Dad's Diary
Antibodies (3F8) - Today
Hello and welcome to my diary. I think I should probably offer a disclaimer to those of you who do not know me very well. I am irreverent, sometimes egotistical and most definitely sarcastic but ultimately I am a normal average human being. I have three purposes for this diary. First, this is therapeutic for me. It allows me to get out my feelings and deal with my own pain. As a result, I am better prepared to care for Sydney, to care for my wife and to care for my family. Secondly, as a parent of a child with cancer it is my hope that this may help other parents in the same situation. I know that I am searching for the “right” way to feel and I am beginning to understand that there is no such thing. For you other parents I hope you find some comfort in my words and feelings knowing that there is someone out there that feels the way you do. Lastly, this is my gift to Sydney on her eighteenth birthday.
I will write how I feel and what I think. It won’t be appropriate or polished and definitely not politically correct. I have no intention of swaying opinions or influencing people. It is my words and how I feel. It might make you happy. It might make you sad. Knowing me, it might even make you mad. But it will make me feel better and hopefully it will give me the strength to deal with my own pain.
At this point I really don’t want to discuss this diary. I don’t want to know that you are reading it. It is still a little too personal and close. So please do not talk to me about it but if it makes you feel better then I am glad.
So here we go……
1/2/2006 3:51 AM
Happy New Year!! I know a lot of people that will be very happy to see 2005 enter the history books. I, on the other hand, was kind of comforted by good old year 2005. In retrospect it was a pretty great year. I like it because Sydney never showed any signs of disease last year. In fact, it was just about a year ago that we were making the decision to be treated at Sloan. We heard for the first time that Sydney may not have relapsed. Yes, it was this time last year that we were able to really start hoping again. I never forget where we have been and where we have come from. I fully realize how aggressive Sydney's disease was and I understand the implications. For that reason, I am both stunned and so very thankful that we had such a wonderful 2005. We are incredibly lucky.
Last year also brought Ainsley, our little beacon of sanity, into this world. At some point in our lives our kiddos over threw our parental government and ever since our family has been characterized by civil unrest and chaotic upheaval. The toddlers out number us and unfortunately they also believe they out rank us. Ainsley has been the calming force that gives us hope that all children are not destructive little menaces searching for chinks in our parental armor. She is our last hope at a nice, calm, and relaxed child. Then again, she is of Lynley and I's stock so and I guess we should just prepare for the worst.
Over the weekend we also received news of our upcoming scans. They have come quickly. Last Thursday we asked about getting them scheduled and ,bam, we will be starting tomorrow. Yes, tomorrow morning Sydney will be going in for her bone marrow biopsies and aspirates. The "surgery" is scheduled at 9:00 AM but we will need to be there at about 7:30 AM. The entire surgical process will only last about ten or fifteen minutes. That will be followed by about an hour of post op recovery and then we will be back on our way home to await the results.
I never ever like to say that I am not nervous about scans. In fact, I am usually riddled with fear. This time is a little better. We haven't really had any of the strange aches ,pains, fevers, or other symptoms that make a parent of a child with NB shudder. All in all, Sydney has really been a pillar of health. Sure we have had problems with ear tubes, etc. but that is all small potatoes. As far as signs of life threatening diseases go she appears to be doing pretty well. None the less, I am trying to find another bad habit to swear off and I am praying as hard as I can. As I always say, the next scan is always the most important one in our lives.
Get ready for a new year of purpose.
5:34 AM 1/3/2006
Okay, so I get more nervous the closer we get to scans. Lynley just came downstairs and gave me a good dose of fear. She is pretty worried about these scans because it seems to her like we find something whenever we aren't expecting something. I don't really think that is true. I do, however, think she is right on the mark with how one feels in this situation. I think it comes from experience at living in the childhood cancer world. When things start to return to some normalcy (You know, treatment is pretty much over, the kiddos are back in school, you are able to start going back out in public - yes, normal life stuff.) you realize what has been missed out of life. You know what the cost is to return back to the cancer world. You know what must be given up. You know every intricate detail of what life is like in the cancer world. It is these times when it is more scary. Think about it. The risks all feel much greater. The shock of receiving a positive marrow result when you already have cancer and are in treatment is not as great as that first marrow result when you entered the cancer world. When your child is healthy you don't expect the worst to happen. That huge shock becomes ingrained in your psyche. After that it feels like when everything is "normal" and healthy is when the bad things happen. It is because that shock is so memorable. That taste is still in our mouths. So, for as long as we go on, we will continue to fear normal and healthy because it was when Sydney was normal and healthy that she got cancer.
That may not seem entirely logical but it is a natural reaction. Besides, whoever said that this world was logical. I have always said there were two Mark's - the rational one and the irrational emotional one. They are both still here and I still understand both of them. I could always use logic to justify either of their feelings. It is days like this that I always feel them both.
It is time to go. I am purposefully praying for clear marrows and a healthy Sydney.
6:21 AM 1/4/2005
Yikes! I am way behind this morning. It must be from too much celebrating last night. Yeppers, Dr. Eames gave us a jingle last night and was happy to report that she had personally evaluated the slides and she saw absolutely no tumor. That is correct, No Tumor!!! Lynley and I were ecstatic. There is really no greater sense of relief. My best estimate of the feeling is that it must be just like winning the lottery - once every three months! Now this isn't the end all be all of marrows. We are still awaiting the bone biopsy results, the specialized testing results (RT-PCR), and opinions from Sloan but this is one notch on our belt and we are extremely pleased. I just can't get over how good it feels.
Trying to put my emotions into words is pretty difficult in this case. Childhood cancer does funny things to you. It is responsible for extreme highs and extreme lows. The good news is that when you get the good news you feel better than you ever have felt in life. The easiest way to explain the sensation would be this: Imagine you are walking through a convenience store with your child. You are smiling and happy. Your child is asking you to buy some candy. You are realizing how good he/she has been and are succumbing to their whimsy. You are happy with your life and thankful for your child. It is one of those moments in life that you truly fell appreciative for what you have. All of a sudden a gunman busts in the door to rob the store. He grabs your child and puts a gun to his/her head.
Before you can think you hear a gun fire.
You realize it was the police that shot the gunman and saved your child's life.
Your child is healthy and fine.
She will live to see another day.
I can breath again.
That is how purpose feels today.
Until the next time.
5:01 AM 1/5/2005
Good Morning! Well, yesterday was the first somewhat normal day that I can remember in quite a while. Sydney went back to school, the beloved in-laws went back home to Alabama, both Lynley and I were back to work, and Graham and Ainsley were at home with Martha. Lynley and I are still fighting a battle with the sniffles and all of the kids seem to still have stuffy noses. All in all, though, I think we are in pretty good shape.
We are still waiting to hear about the bone biopsy results. We expect to hear about them today. We don't expect to hear about the RTPCR results or opinion from Sloan for a couple of weeks. We have received next week's schedule and it is looking to be a pretty busy week. On Monday we have another appointment with Sydney's ENT to have another look at her ears. Neither Lynley nor I are expecting any improvement. Based on Candy's (the nurse practitioner at the oncology clinic) perusal of her ears it appears as if the tubes have continued to inch their way out. On Wednesday we have Sydney's CT scan (full body and orbits) scheduled and on Thursday she will be completing her MIBG scan. I have learned to expect the unexpected but I am feeling less nervous about the upcoming scans now that we know that the preliminary results from the marrows are clear.
In the meantime we are going to be indulging in normalcy. Evenings will be much like they were last night and the night before. We will come home from work and relax. With dinner already in the oven we will make our way out onto the back porch for a fun-filled evening of car riding, bubble blowing, and sibling rivalry. If it stays this warm (it was 84 degrees two nights ago) it might even break out into a massive squirt gun fight much like it did the night before last. I must admit Lynley was plain out gun powered. Sydney had the super soaker with water back pack, Graham had the hose, and Lynley was left with a chincy little water side arm. I was safely shielded in the kitchen behind glass and it was not below me to open up the window a hair to spray passers by with the kitchen sprayer. In the end everyone ended up wet. Well, everyone but me. The good news was that we all had a great time and that is ultimately what this ordeal is all about. It is about family. It is about being together.
It is about your purpose!
4:52 AM 1/6/2006
This is one of those mornings that I absolutely hate getting up to open my email. I had received several email about Emily Emily is a little girl whose family I have become pretty close to. She is a year older than Sydney and she was diagnosed with neuroblastoma a little over a month after Sydney was in 2003. Her father was one of the people up at Sloan that I had come particularly close to and her mother and I travel the same circles in the NB world. Interestingly enough, Emily is the twin sister to MaryGrace who has never had neuroblastoma. Surprisingly there is a comparatively large group of twins where one of the twins has neuroblastoma and the other does not. This family has become our friends and are part of the small group we call long term stage IV neuroblastoma survivors.
Now to the email. Just as Sydney has received good news about her marrows Emily has as well. Unfortunately, their was also a suspicious finding around the area of her original tumor site on her CT. As they know, this in and of itself it may not be so alarming, but the doctor’s have said that they are to go New York immediately for a biopsy. Having had experience with so many other Neuroblastoma families, they know that this appears to be leading down a bad path.
In their words:
"In all fairness, there is still the minute outside chance that this is the growth of a benign tumor, and we will hang onto that hope until we are told different. After all, her urine tests and bone marrow biopsies so far have all come back okay, but this disease is a sneaky monster, and we have to keep our guard up at all times, and if there is even a slight suspicion that it is coming back, we are addressing it now.
While in the face of bad news, we will count our blessings, as things can always be worse. Emily’s CT scans revealed that she has no disease in her brain and orbits (which is a common relapse point) and as for this mystery in her pelvis…we will wait until the biopsy results come in to face the worse, if at all."
This family knows the consequences. They, like us, have traveled this road for a long time and understand the implications completely. They once wondered what was worse - finding out whether your child has neuroblastoma or finding out your child has relapsed. Let's pray they don't find out. Once you know, there is no unlearning it.
Please lift Emily up in prayer and that her body be free of cancer.
On our home front, Sydney has taken a turn for the worse. Yesterday she sporadically complained that her stomach was hurting and in the middle of the night we awoke to find her in a puddle of vomit. It doesn't seem nearly as important but it somehow seems scarier.
It will be another day of multipurposity.
4:16 AM 1/9/06
So far this morning is not starting out as planned. Sydney had appeared to be on the road to recovery. In fact, yesterday we would have counted her amongst the healthily acceptable. We might even have called her cured. Perhaps I should back up a bit. On Friday I stayed home with the kiddos. Sydney continued to throw up throughout the morning. Her temperature was never really on the rise and she acted pretty normally. She refused to eat or drink much and aside from the nausea seemed to be okay. By afternoon we had gotten the nausea under control. We had given her Vistaril to settle her stomach which also caused drowsiness. She would sleep much of the afternoon away and make an early night of it. On Saturday she was much better. She still refused to eat much but it was clear that she was on the mend. She had a little to eat for breakfast and lunch and by dinner she was back to normal. Sunday was just an average day. We went out for both breakfast and lunch but spent the rest of the day at home. All of the kiddos seemed fine and other than some pretty significant honey dos it was a relaxing day around the house. You see, everything seems to be going pretty well here.
And then, late last night it all started up again. First it was Ainsley who sat up in her bed and reintroduced us to the concept of projectile vomiting. She would continue to throw up 4 or 5 times throughout the night. And then, Sydney decided to spike a 102.4 degree fever at around 3:30 AM. It is since then that I have been up. You see, we still have a rule to call the doctor for any temperature above 101.5. Additionally, we are generally supposed to withhold Tylenol until the doctor gives us the okydoky. Lynley has asked that I wait an hour or so before a give the doctor on call a jingle. Lynley figures we probably don't reserve the right to call at 3:30 AM so I sit here and wait and debate. I hate to see Sydney that uncomfortable. I think I will go give her some Tylenol. I had better run.
My purpose hit the ground running today.
4:48 AM 1/10/2005
Well, we are broadcasting today from the place you might least expect to find us. Believe it or not, you can now find us in the pediatric intensive care unit at beautiful Cook Children's. As you might imagine yesterday was quite the whirlwind. We finally called the oncology doctor on call a little after 5:00 AM. Dr. Granger was the doctor on call and we agreed to treat the fever with some Tylenol and to bring her into the clinic first thing in the morning. There was then a flurry of activity as Lynley and I hustled to get ready. By 7:30 AM Sydney and I were at the oncology clinic. Lynley was at home with Ainsley (who was continue to puke on the hour) and Graham. It took a little while to get everything going at the clinic. Sydney pretty much slept in the treatment room as I tapped my fingers on the keyboard. I guess you could say that Sydney was lethargic. To me she was just tired from a bad night's rest but she was responsive. She certainly was not her fireball self but I didn't have the impression that she was critically ill. After some Rocefin and some fluid we were just about ready to go. We were going through the normal routine of final blood pressures, temps, etc. when the fun really began. Sydney's blood pressure was about 70/30 - which is low. To be honest, I wasn't terribly concerned. I probably should have been but I really wasn't. I have seen Sydney with low pressures on several occasions and it really did not shock me too much. I guess the major problem was that I have seen low pressures before but there had always been a reason. This time the reason was unknown and so everyone had to take a precaution and Sydney going septic was the concern. Still, to me, I was not too terribly concerned. Regardless, the next think I knew there was a flurry of doctor's and nurses in and out of our room. Minutes later there was a critical care transport team, a gurney, and a mountain of mobile equipment and we were being whisked off to the ICU.
The good news about all of this was that as we were leaving the clinic Sydney's blood pressure had recovered. She was now 90/40 and the transport nurse had just started the dopamine seconds earlier. As we were making our way across the sky bridge Lynley had called again. I had her on speakerphone for most of the action and she was now driving below us searching for a parking spot in an already overfilled garage. In minutes we were in the ICU. There was another flurry of activity as hoards of doctors and nurses rushed in and out of our room. Keep in mind that during all this time Sydney is awake and aware. I am just plumb blown away. I could not believe that all of this is happening. To me it felt more ridiculous than scary. I am still in shock that we are in the ICU.
Ever since we have arrived Sydney has remained stable. We have watched a lot of television. We have colored. We have talked. Life is pretty normal with the exception of the fact that we are in the middle of the ICU. Don't get me wrong. Sydney isn't perfectly healthy but she certainly does not appear to be critical. Here is where we stand. Sydney came in with low pressures, high fevers, lethargy, and a high white count. These are all indicators of a potentially life threatening infection. However, cultures so far remain negative. Our current theory is an infection coupled with dehydration. We think it is this combination that is producing the preceding symptoms and although it needs to be addressed it is not nearly as serious as it could be.
Well, I had better run. It is time to run up to the third floor for another cup of coffee and it is about time for another update for Lynley. I will update if anything changes.
Unexpected purpose......
6:42 AM 1/11/2006
Okay, so we are still in ICU, but the good news is that we really don't belong here. I personally think we belong in the nice comfortable confines of what we call home. The doctors seem to think that a couple days of careful observation in the hospital may be more appropriate. Nobody really believes that we should remain in the ICU and if every other bed was not taken we would certainly be elsewhere. So, for the time being we remain in our glass box in the ICU - the Dungan menagerie.
Ironically the sickest Dungan is actually not in the hospital. She is at home with Mommy. Ainsley came down with whatever this is and she is having a tougher time with the recovery. It is now 48 hours into her stint of vomiting and diarrhea and the puke spicket finally seems to be running dry. We are trying to keep the fluids flowing and we will see if we can't keep her out of the hospital as well.
Sydney is doing very well. We are now in Day three of our ICU stint and Sydney continues to refuse to show them any sign of sickness. She is yet to develop a fever, a positive culture, a funky blood pressure, or anything of the like. The biggest problem for her seems to be just keeping her entertained.
Today Sydney is scheduled for a CT scan. This is part 2 of her regularly scheduled quarterly tumor work up and it is just happenstance that we are in the hospital. With all of the funkiness we have seen over the past week we are simply hoping and praying for a nice clean scan. As we all now know just because you have nice clean marrows does not mean all is well in NB land. By the way, I am still waiting to hear about Emily's status. We continue to lift their family up in our prayers and hope that their funky CT findings are nothing but a benign enigma.
Well, I had better run. For some reason I don't have any internet access this morning and I need to call Lynley to tell her all is well and to check up on the rest of my brethren. I hope I get to post his soon but only time will tell.
My purpose is fine.
6:07 AM 1/12/2006
Howdy, we are finally out of the PICU. Of course, that isn't to say that the accommodations or the medical staff weren't great but it is just really hard to keep a healthy kid down when your in the PICU. We now reside on our old hunting grounds in 3 North. In fact, I am behind in writing my diary because I have been out socializing (I mean discussing the medical condition of my daughter) with all of my buddies (I mean the qualified and caring oncology medical staff) Things are going very well and I am betting that we are booted out of here today. The stay has been fun but there are just too many sick kids at the hospital and it is time for us to get to someplace safe. ( I mean there is just too high a premium on beds.) The are much sicker kids waiting for a bed so it is time for us to go.
Sydney's CT scan went pretty well. I am not allowed to say I have received the results. So, given that, I certainly would not be able to tell you that they were clean. I also would not be able to tell you that the only notable findings were that her left kidney was substantially undersized (probably due to radiation), she has a sinus infection, and that a 3mm nodule was found in her right lung. The nodule is NOT (I repeat not) consistent with metastatic disease and it is believed that it could be something as benign as an air pocket. It was not alarming to the radiologist and they concluded that we should simply take another look at it during our next set of scans. You should know that if I knew any of this information I would certainly be asking some more serious questions of our oncology team today. I am not particularly concerned about the 3mm spot found on the lung but I do want to know why it is not believed to be disease. So riddle me this - Why is in not consistent with metastatic disease? Yep, I will need a Monday morning quarterback on this one.
Well, I had best be off. I have a mountain of work to do today and I am sure Sydney will be up shortly. I have been much too busy playing amateur oncologist this morning.
Bet hey, it is, after all, my purpose.
6:01 AM 1/13/2005
Home, sweet home! Both Lynley and I are exhausted but incredibly thankful to be home. Unfortunately if the little white blisters that are appearing on Lynley's throat are any indication of why my throat is hurting me we are not quite finished. It looks like today will be a good day for a doctors visit.
Sydney is doing well. She is happily at home although she continues to receive daily IV antibiotics. Graham was so excited to have his sister and partner in crime back home that he must have made 20 laps around our foyer screaming "Sydney, Sydney, Sydney" when we got home. Unfortunately, Ainsley continues to be the one that is really sick. She was continuing to throw up yesterday afternoon. I know everyone in the world has whatever this is but I think it is time to take Ainsley in to see Dr. Debbie if for nothing else than to check her for dehydration. (Yes, we are a little sensitive about that now.)
We still don't have any answers regarding Sydney's CT scans. This is one of those cases that I just wish that they would allow us to talk to the radiologist. The official consultation report states:
A tiny 3mm density is present within the lateral aspect of the right lower lobe. This could be a small area of air space disease. A tiny pulmonary nodule could be present at this location. The appearance does not appear to be that of metastic disease. This lesion was not appreciated on the previous study , and, in fact, no abnormality was present at this location. Follow-up of this region on the next examination should be performed. No other parenchymal lesions are seen.
Well, great, isn't that nice? But, it really does not tell me what I need to know. Yes, I know, it does not look like neuroblastoma and I am happy for that. But, part of the bonus of treating my daughter is that you get me to ask all kinds of annoying questions. I don't know what it is but I need to know why it does not look like neuroblastoma. Does it not look like neuroblastoma a little bit or is it total unlike neuroblastoma in every way, shape, or form. Secondly, if it isn't neuroblastoma, what is it? Yes, I can read that it could be a tiny pulmonary nodule, or air space disease - but what is that? What does it mean? What could this spot be indicative of - other conditions, the common cold - what?
I am working on the answers. I just haven't found them all yet.
Until the next time.
I have a purpose and these radiologists just need to understand that. If I am going to snoop into my daughter's medical records the information needs to be digestible.
5:36 AM 1/16/2006
It was an incredibly relaxing weekend followed by a miserable night of rest. Graham and Ainsley must have awoken every hour on the hour. In our effort to get Ainsley to keep her formula down we began to feed her less in quantity but more often. It worked great from a nausea standpoint but the theory has some hiccups once you are recovering from you sickness. Ainsley is under the distinct impression that she should be allowed to snack all through the night. Now we have the challenge to get her back to normal even though she seems to have recovered from a medical standpoint.
With the kiddos on the mend we took it pretty easy this weekend but we did get the opportunity to run out to the stock show and rodeo for a couple of hours. This time we spent most of our time and money on the carnival side of the extravaganza. The kids really love going to see all of the animals but we weren't really ready to make that level of a commitment. After all, Sydney still has her "noodles" in and I imagine that would have been a huge infection risk. The good news is that today will be her last day of IV antibiotics and we will be deaccessing her this morning.
I want to thank Katy for her excellent explanation of the CT scan results. That is exactly what I needed to hear. She wrote:
"The fact that the nodule is called a density implies that it is a solid mass (not air). Now there are plenty of diagnoses that would fit into the described nodule, and no one diagnosis particularly fits the description. A common cold would not appear on the scan, as cold are upper respiratory infections. A teeny tiny infection could appear as a small nodule. Location of the infection helps determine the infecting bacteria/parasite. TB is classically located in the UPPER lobes not the lower lobes. Air space disease are simply diseases that occur in the air sacs of the lungs. Infection is a major cause of air space disease. Something 3mm would likely not be a very serious infection. I know nothing about the presentation of metastatic neuroblastoma in the lungs, but I would presume that since the radiologist stated it does not appear to be metastatic dz that it must either be in the wrong location for NB, or NB would typically appear as multiple nodules not single ones, or that the NB would be a different density than Sydney's. In my experience Radiologist will be over cautious in their interpretation. So if this doc states "the appearance does not appear to be that of meta. dz." feel good that she is feeling pretty confident."
It really helps to get this "inside" information. I hate bugging oncologists and radiologists about information like this, especially when we are dealing with something that is apparently so benign. They have bigger fish to fry and lives to save. I have a thirst for knowledge when it comes to medical information and it frustrates me when I don't have a relatively complete understanding. When it comes to neuroblastoma I have learned a lot. I know enough that I can make truly informed decisions but when it comes to medicine or medical conditions that are not directly related to neuroblastoma or exist on the fringes I feel just as clueless as ever. I guess that is why medicine is divided into specialties. This lack of knowledge can be frustrating when you can't comprehend even the simplest of things. You have to learn to trust people's interpretations - people you don't even know - and that can be difficult when you are dealing with your child's life. Oh sure, I could have gone and read up on interpreting CTs with this specific description but honestly I just did not have the time. Additionally, I have to also say that I am a little gun shy. After the strange MRI results that we had over a year ago that threw Sydney back into treatment I have learned that radiologists interpret the scans (interpret being the key word) and this is where the shades of grey come in. If you remember back, some felt that the MRI was completely abnormal and consistent with metastatic disease while others felt it could have been something as benign as a shin splint. From that point forward I have needed some reassurance. I need to know whether this nodule in Sydney's lung is or is not neuroblastoma (for sure) and if we are "guestimating", well, I needed to know that as well. By giving me insight into the types of things that a radiologist would look at to determine if this was disease I certainly feel better. It seems more clear cut than I had suspected.
Purpose is a never-ending learning proposition.
5:54 AM 1/17/2006
One week down and Sydney has finished all of her IV antibiotics. She is noodle free and ready to reenter the world. This morning she will be returning to school. Graham and Ainsley appear to be on the mend as well. I was expecting that it would take much longer to cure Ainsley. I was counting on a couple of days to get her feeding clock set back to standard time but believe it or not it only took one two hour stint of screaming to get her back on track. I think their nanny thought I was cruel though.
At about 11:30 Ainsley had some bananas and four ounces of formula. She had been up most of the morning and Martha put her down for a nap. By about 12:15 when I arrived home (she had only been asleep about 25 or 30 minutes) she was already starting to squirm. By 12:30 she was in a full born cry. Lynley and I checked all of the usual suspects. Her diaper was clean. She was healthy. No signs of injury. Yep, she was just hungry again and she thought a snack would foot the bill. We elected to use this opportunity to make our point. Eventually Lynley went back to work and I went back to tapping my fingers on my laptop in the den. Ainsley wailed away. At 1:00 PM, distressed by all of the wailing Martha went in to try and calm her, when that didn't work she tried to sneak a bottle in. I caught it before it hit her lips and told Martha to wait. I knew it was driving her nuts so I let her go home early. Ainsley would continue to wail solidly for another hour. I checked on her periodically to make sure she wasn't in any distress and to ensure there wasn't another culprit for the cry. At 2:00 PM she finally fell asleep. That was a lot of crying for a little girl. She was tired. She woke up happily at 3:30PM. She was starving and wolfed down another bottle in no time flat. She was full for the first time in over a week It would be dinner time before she would feel hungry again. We fed her. She slept through the night. She only awoke once. Peaceful slumber.
It was a pretty nice and boring day back in the grind. Yes, much better than the start to the week before. And to think just one week ago we spent our first night in the ICU.
It is nice to have a day of purpose that isn't fed by adrenalin.
5:51 AM 1/18/2005
Yesterday was our first day back to normalcy aside from the fact that Sydney told me a bold faced lie regarding her nap. I have to admit it was a first in my tenure as an official Daddy and I still don't know exactly how to handle it. Everyday when I pick Sydney up from school I get a report from her teacher. Usually we cover a little of what they did during the day but I always get an update on whether she took a nap. Nap taking is important stuff in our family and we take it seriously. During school they have nap time and we treat it just as importantly as we treat the rest of their curriculum. So, if there is a nap on the schedule (which there always is) then it is Sydney's job to take a nap. Of course, she is also still of the age where a nap is critical to our continued sanity in the evenings. To make a very long rant short, Sydney is required to take a nap everyday and if she does not take one at school then she has to take one at home. Hence the reason the announcement of Sydney's daily nap taking skills are so critically important.
Regardless, yesterday Sydney declared a successful nap taking experience. Then, in my daily parent teacher conference, I learned that Sydney did not, in earnest, take a nap. I confronted Sydney on the accuracy of her statements. I asked if perhaps she just closed her eyes during nap time and did not actually go to sleep. She said no. I asked if she just rested (a rest means that you just pretended to sleep in Sydneyan). She denied it. I asked if perhaps she just took a very small nap and she denied that as well. Worse yet this was all in her teacher's presence. Here I had an adult, her teacher, who had nothing to lose by telling me that Sydney did not take a nap. On the other hand, I had my daughter, whom I am to support and believe in and all that goodly stuff, who had everything to lose and was telling me something else. I want Sydney to know that I believe in her but I also want to not have her lie. I had just done my best to try and give her a reasonable escape and she still stuck to her story.
I figure that at this point it is best to let this incident slip into the history books. I don't think this one incident is going to be life shaping. Well, that is, I don't think it will be life shaping for good but, perhaps, it could be for the bad. If she is lying and I confront her she will (a) know that I don't trust her and (b) get a small slap on the wrist for lying. However, if she is telling the truth because the teacher happened to be looking the other way when Sydney fell asleep for a split second (or whatever the improbable excuse is) my confronting her and not believing her could have disastrous effects to her self esteem. She needs to feel her Daddy and Mommy's support and that is not something that seems worthwhile for me to dash over this one singular incident.
So, I will wait. I will watch. If it happens again I will be forced to put an end to it. But, for now, for now, I will believe in my purpose even when it seems wrong.
5:32 AM 1/19/2005
It appears that yesterday will go down in the history books as completely normal. There were no health issues and no outrageous lies. I am happy to report that Sydney did take a nap at school and thankfully the teacher report supported that finding. In fact, the only excitement was a broken coat hook in Sydney's cubby which we replaced. Yes, we are living like the stars.
I have been waiting on an update for our friend Emily. The last that I had heard was over the weekend. The family had made it to New York and Emily had her surgery to find out what was growing inside her tummy. Based on the surgeons report it appears to be neuroblastoma and the family has been sucked back into "the world." My senses all tingle and the hair stands on the back of my neck just from reading her father's words. It is hard to explain the sensation that a parent feels when their child's life hangs in the balance and then the added dimension of everything that makes up the cancer world makes it completely incomprehensible to someone who has not walked through it with their child.
At the beginning of our journey I talked frequently about the two Mark's. One of them is in control. He is in charge. He can think and act clearly. The other is emotional and unpredictable. He feels a weight on his chest and it feels as though his soul has been sucked out of him. He is devoid of happiness and hope and can see nothing but pain on the horizon. The only moments of any comfort can be found in the presence and arms of his child.
I have come to believe that these two realities exist in many of us and I could see it in Emily's parent's words. They described the moments before they were delivered the news as rational. They discussed the possible paths their lives might take and what they would do if the worst did, in fact, happen. This sounds like the discussion of a family in charge. In fact, this sounds like just about any cancer family that has been through treatment and made it out the other side. They have become adept at making life and death decisions for their child. They know the trade offs. They understand the medicine. They know the disease. They know the routine. They know how to get the job done. There is hope.
I have actually overheard conversations of many people having these discussions. There are many times I have seen families outside at Cook's having these very discussions. People who have not been there think it is strange. The discussions aren't necessarily cold but they are delivered with out true emotion. It is hard to believe that people are discussing their very own children. They seem so in control and are in stark contrast to the others, perhaps stepping into this world for the very first time, who are entirely full of emotion. Those families are living in the other Mark's world. Those that have been there before, though, they are exact - almost as if the discussion was amongst the doctors. "We will do this, followed by this and this, and then we will do this if this happens and we will do that if the other thing happens. Agreed? Good. Done." They are people of action and solutions. They have experience and are ready to take anything on.
And then that moment comes. Those words that bring all of the emotions back. It is that very second you realize that neuroblastoma is really back in your life and you can take everything you just said and throw it out the window. Your heart is broken and the cursed reality hits home. Logic and planning do not matter. All you feel is pain and you wonder if you will ever feel normal again. Will you ever breath again? Will you have another moment in your life where you do not feel this pain? Will you ever feel whole again?
Rest assured. There is hope. You just have to find it.
That is what a purpose is all about.
5:43 AM 1/20/2006
What a great night of sleep I had. I think I am still recovering from our hospital stay. To be honest, I really kind of like being at the hospital. I always feel so safe in the hands of the doctors and nurses at Cook's. But after all of that is said, I always feel like it takes forever to recover. When I am there I never really sleep deeply. My eyes are closed and I am dreaming but it is though I am dreaming about reality. It is as though I am always concious of what is going on and my senses are super alert. As a hospital dad, I have finely honed skills. I can differentiate every beep and breath as good or bad without fully awakening. It just seems to take forever to recover. Today, though, I have come full circle and I finally feel refreshed.
Yesterday was another typical day. There was no high drama and no broken hangers in Sydney's school cubby. Unfortunately, that left my focus at work where I was busy through both breakfast and lunch. Today will be much the same. Sydney has an appointment with her ENT and we should get an update on her ear tube "rejection." I am pretty sure that one of the tubes is completely out and the other is either out or just barely hanging on. Who knows where this path may lead us. I doubt that new tubes will be in her short term future and I imagine it just means that we will be reentering the world of frequent ear infections.
We are hoping for a quiet weekend. Cousins Rich, Laurie and family are coming into town to visit their son Rob who plays on the TCU basketball team and we are hoping to get to spend some time with them. Of course, there is a mountain of honey-dos and I am sure the kiddos will need active entertainment. We are expecting rain over the weekend so I imagine it will take some effort to keep them occupied indoors.
A weekend of normal purpose - I'll take it!
4:59 AM 1/23/2006
Sydney's appointment on Friday went well. It turns out that her ear tubes are exactly as expected - one is out and the other is just barely hanging on. We discussed several different alternatives with Dr. Lowrey but it appears that the plan centers around more ear tubes. His idea was to use longer tubes for this go around but I am still a little gun shy. We don't know for sure what caused the rejection in the first place. Dr. Lowrey was eager to accept our theory that it could be related to the GM-CSF. Dr. Howrey though, did not think that the response generated by the drug would necessarily cause the rejection. Regardless, we still do not have an answer and I am not real excited about putting Sydney through another ear poking unless we can prevent the rejection in the future. For this reason Dr. Lowrey has suggested using the longer tubes and I have suggested at least postponing the procedure until we get back from this treatment cycle in New York. To me, this is a two pronged attack. First off, if we schedule the procedure right when we get back we will have approximately 7 weeks before another treatment cycle. This may give her ears enough time to heal before they are subject to the effects of immunotherapy. Secondly, every treatment cycle we do is another one that is closer to HAMA and the end of this trial. We are so close to a HAMA I can smell it. There is a good chance that this could be our very last round and if that is the case then postponing her ear poking for another couple of weeks would certainly be worth the wait.
Sydney and the kiddos had a pretty good weekend. On Saturday we spent some time with family and helped celebrate DeeDee's birthday. We all went out to dinner and celebrated in our Disney Princess birthday hats. Luckily no one realized that we were not celebrating one of the kid's birthdays. In fact, Sydney liked the hat so much she decided to wear the princess hat all through the rest of the weekend. I am happy to say my doll playing son despised his Disney Princess birthday hat and was more interested in flicking his food across the table with a fork. Ainsley, of course, was the perfect little angel and obliged our hat wearing by dawning her princess hat for as long as we chose. She is a clever one and I am sure she is just biding her time until she can actually walk and fulfill her escape plan.
Well, enough for an update. There is another busy day of purpose ahead.
4:38 AM 1/24/2005
It is about that time in a child's life that we have to make some tough decisions about Sydney's schooling. Yes, Yes, Sydney is at that age that we have to decide when and where she will be going to preschool. It is a decision not to be treaded on lightly and has left Lynley and I with hours of discussion. The problem is that hours of discussion can be quite difficult to come by in the Dungan household. For instance, Lynley and I were discussing the risk and rewards of sending Sydney to various private schools throughout Fort Worth last night. We were in the kitchen cooking dinner. Ainsley was on the floor rolling from room to room chortling in toddler speak. Graham had rolled the pack 'n play into the kitchen, climbed up into the diaper changer, and was watching television while sneaking the occasional pretzel that he had snuck from the pantry. Sydney, the future Nobel Prize Laureate and subject of our mindful discussion, had zipped her self up in the pack 'n play travel bag and was playing inch worm across the kitchen floor. Mind you she could not see out of the vinyl bag and would bonk her head into a cabinet door and let out a laugh every time she made it across the galley kitchen floor. Yes, the chances of us spending $11,000.00 per year to go to private school where becoming less and less likely the more she scooted around. With every bonk of her head the likelihood that the money would be used for some padded walls and a nice comfy jacket were becoming more of a reality.
All kidding aside it is a particularly difficult decision. There is no doubt that Sydney will have some challenges as she makes it through her school years. The question becomes "Will private school be a more nurturing environment for her to succeed?" Will she even be allowed in? I don't even know what the likelihood of a school accepting a child with cancer may be. I don't think we are enough of a minority to even get token status. There is no question that there are some increased risks of accepting a child with cancer into your institution but I also know that it would be considered discrimination to not allow her every opportunity. The fact of the matter is that she is intelligent and regardless of what her future holds I am sure she will be in the top of her class. The trick is going to be to find an environment that is right for her and a support network (teachers and administrators) that is aware and eager to face her challenges head on.
It looks like our discussions have leaked into this morning. I don't know if I can concentrate on this discussion with Lynley without the kiddo chaos. It is so darn quiet. Well here goes nothing.
Purpose is an ongoing commitment.
6:00 AM 1/25/2006
Good morning! Yesterday was incredibly hectic and it looks like today will shape up to be much the same. We received a call from Yichih (one of the nurse practitioners) at Sloan Kettering and they have asked us to postpone our treatment for another week. Apparently they are over booked and the beds are full of kiddos getting 3F8 treatment. There are 14 NBers scheduled for 3F8 during the two weeks that we were supposed to be there. That does not even include all of the kids with neuroblastoma that are receiving chemotherapy, etc. The fact of the matter is that they are jam packed. We had already booked our flights but we are rearranging to see if we can reschedule. We will just have to do our best to see if we can make it work out financially. The fact of the matter is that all of the families that will be there that week are dealing with children who have neuroblastoma, most are from out of state, and all have made plans to be there. I have to believe that it is less critical (from a time perspective) for us to be there that week than many of the other kiddos. For instance, I am sure that there are kids fighting active disease and the timing of their treatments are far more important than ours. So, in short, we are making a mad dash to see if we can do it without throwing the entire world out of balance. This time I was taking Sydney by myself and Lynley was staying home with Ainsley and Graham. The problem is that Martha, our nanny, was also going to be out of town so Lynley's dear, sweet, super-spectacular mother (I got in trouble for referring to her has my dear-sainted mother in-law) was flying in to help take care of thing 1 and thing 2. So, at the very least, we have a couple of tickets to consider moving around. Regardless, I have to run. I had a relatively late start this morning and my wife has put me on notice to get it in gear. It is unfortunate because I had much to talk about. Thank you so much for those of you who wrote in with advice about schools. I will get back to that soon. Oh, and you would not believe what Sydney did yesterday.
Oops, Gotta run, I've got purpose already.
4:49 AM 1/26/2005
Unfortunately this will be another quick update. Today will be another whirlwind. Lynley wrenched her back yesterday morning and has had a really difficult time getting around. She spent most of the evening flat on her back on our massage mat. She looks like she feels a bit better this morning but she is by no means healed. She still walks like she needs a cane and some blue hair. On another note Sydney woke up early this morning to tell us that she had an ear infection. Luckily, we already had a clinic appointment scheduled for today so we will certainly have it checked out. She is pretty good when it comes to diagnosing her own ear infections. After her clinic visit we will be meeting with Miss Nicole (Sydney's teacher) at her school. This is an official parent teacher conference and it should be interesting. Ordinarily I would expect to hear good things but after the episodes of the day before I am going to reserve judgment. When I went to pick Sydney up at school the other day she came running up to me to tell me that she had taken a nap. However, it did not take long to hear the rest of the room chime in to tell me that she did NOT, in fact, take a nap. I once again gave her the opportunity to bow out gracefully by admitting to another minor charge but she did not catch my drift. After a few minutes of discussion she fessed up. The next thing I knew she had disappeared from the room. I had assumed that she had either (a) gone to the restroom or (b) elected to get a head start out to the "Daddymobile". I quickly gathered up her school stuff and scooped Ainsley and Graham up in my spare third and fourth arms. As we made our way out of the room I realized Sydney was gone, completely gone. She was not outside in the car and she wasn't in the bathroom. Panic set in but it was short-lived. It only took a moment for the reality to set in that I was not dealing with an abduction but rather a strong willed 4 year old. It took about 15 minutes for myself and 3 other teachers to find her. She was hiding in the school kitchen. When asked the question "why?" she simply said that she did not want to go home and take a nap. It was somewhat embarrassing that my child took to running away and hiding two days before our teacher's conference. It was bad timing. But, in a way, I was kind of pleased. Sydney made the connection. If she does not take a nap at school she will have to take one at home. She realized that there were consequences for her actions. She made this distinction completely on her own and you know the first step in the road to recovery is admitting that you have a problem. That is rule numero uno in un-nappers anonymous. Regardless, after his episode there were some serious discussions. I don't even know where to begin. Let's just hope she wont be telling any more lies and she wont be hiding from her punishments in the near future.
She is four. What I am thinking?
It looks like I will need to get out the big purpose gun for awhile.
6:11 AM 1/27/2005
Well, with Sydney, we apparently got the self diagnosing model. She was right on the money. She has a lovely raging ear infection. Our trip to the clinic was quick. It is so helpful when your child can tell you that she has an ear infection and that she needs some biaxin, a decongestant and some "no owie" drops. We saw Candy, the nurse practitioner, and aside from the usual pleasantries she quickly confirmed Sydney's diagnosis and sent us on our way with some prescriptions. It was so nice to not leave there on a stretcher surrounded by the medical transport team.
We followed our trip to the clinic with a parent teacher conference. I am both pleased and shocked to announce that my little non-napper is doing extremely well. We carefully went through the 3 page assessment of Sydney's skills with Miss Nicole. Sydney had met all of her basic skills and had achieved most of her advanced skills. There were only one or two advanced skills that she needed some work on. First off, she doesn't spell her name correctly when she writes it. She apparently writes "sdyney." That really isn't the point. The point is that our stellar four year old can write her own name. To make a very long review very short, Sydney is doing extremely well, especially considering her history and the fact that she misses so much school. She has really dove into learning and she is flourishing. I have to be honest, it was just one of those moments that I was even prouder to be a Dad (if that is even possible). I was so completely swollen with pride. I puffed up and I walked with a swagger the rest of the day.
Well, I had best be off. There is a mountain of work to do today and I can hear the urchins scurrying around upstairs. This afternoon I will be flying to Chicago for a Children's Neuroblastoma Cancer Foundation meeting and I will be there through Sunday. Wish Lynley luck - she will have all three kiddos.
I've got a clever little purpose and a weekend without kiddos. hmmmmm..
4:55 AM1/30/2006
It certainly was a whirlwind weekend. I come away amazed every time I attend a function of the Children's Neuroblastoma Cancer Foundation. Yes, this was just a board meeting but still my heart was touched. There is an energy and spirit that is hard to describe. Everyone in that room has been touched by neuroblastoma in some way but it goes much deeper than that. It is our little warriors and angels. It is the spirit of our kids that fills that room. You just can't help but be moved. It comforts my soul to be part of a group that shares the same dreams and aspirations for these kids. It is personal.
The foundation is absolutely bursting at the seams. We have so many things going on and just not enough hours in the day. People think I work hard but, to be honest, I don't even somewhat compare to what Pat Tallungan and others do on any given day. Pat, especially, is my hero. It is her that has inspired me to do as much as I could. When our family walked into this world it was she and the CNCF that was right there for us. They were right there at the moment we needed them to offer comfort, support, and education. I have made better decisions regarding Sydney's treatment because of this organization and the fact that Sydney is alive today could be a testament to that. That is how strongly I feel about her and the CNCF.
For me it is as if I have found a home. It is so comforting to be surrounded by a group of people that all share the same passion and conviction. People can be passionate when it comes to what they do for a living. Those are the people that are fun to follow. They are great to be around and their energy is contagious. It is these passionate people that create change, innovation and greatness. The passion here though is ten fold. The passion that drives these people is from their heart of hearts and from the center of their souls. The passion comes from the face of a child and I don't think there could be any stronger driver. Being surrounded by the passion in this group goes beyond contagious. Somehow it alters your soul.
The kids had a pretty good weekend. Sydney continues to battle an ear infection and has produced a fever every evening. However, this has not slowed her down. Other than the fact that she gets warm in the evening she seems to be going full bore. All of them kept there Mommy's hands full. I think Lynley may have been glad to have me back home. Today we will be meeting with the administrators at Southwest Christian School which is one of the potential private schools that we are investigating for Sydney. It will be a full and busy day back in the grind.
My purpose has been reinvigorated.
5:32 AM 1/31/2005
As it turns out yesterday was as busy as we had planned but not for the reasons that we had thought. At about 7:00 AM we received a call from Martha. She has come down with the flu and it will most likely be a while before we see her again. This left us scrambling to find someone to watch the kiddos in the morning. Luckily DeeDee was available and she came to spend the morning with the kids. At about 9:30 AM Lynley called and said that our meeting at Southwest Christian had been cancelled. Apparently, the director of admissions' family had been touched by cancer and she was caring for her mother in the ICU. We decided that we would reschedule at a time that was more convenient for her.
Today will be a fairly long and grueling day for Sydney. We are now two years post transplant and it is time to be reevaluated by the neuropsych team. I am hoping to hear good things but after their last report I am somewhat suspect. The testing will last most of the day. We will arrive at around 8:45 and I imagine it will be early afternoon before we see sunlight again. For Sydney it will be the toughest. I remember last time I was amazed at the fact that she (at two and a half mind you) sat still for about three hours while she was being tested. By the way, in general terms, they concluded that Sydney had an inability to sit still, focus, and had a short attention span. She sat still and answered questions for three freaking hours. Any way, I remember reflecting back on her last round of test and thinking how well she did only to be thoroughly disappointed by the report. I don't know the answer. I am fully willing to accept the fact that I am biased and perhaps my objectivity is shot but I will also tell you that she has been evaluated several times since and no one came to the same conclusions. To be honest I just think it is nearly impossible to assess a two year old. For that reason, I am excited to try this in this new era of kiddodom - the fantabulous fours.
Yesterday I met a new Dad that is just stepping into this world. His eight year old daughter is being treated at Cook's. Their story was a little different than what you hear from the typical eight year old that has neuroblastoma and I am hoping and praying that it is a good indicator of prognosis. She was originally staged as a 2A. Luckily they were able to resect the tumor up front before any rounds of chemotherapy. Unfortunately, the tumor would come back and eventually spread. They are now sitting in the shoes of many of our families. They are back in the hospital starting their first rounds of chemo and preparing to face the long road ahead. We talked for well over an hour. His question was: "I feel like I have a hole in my chest, will that ever go away?"
Hope will fill that hole.
And so the journey begins.
This is what my purpose is all about.
5:42 AM 2/1/2006
What a day yesterday was for Sydney. They tested her up one side and down the other and then inside and out for good measure. They only met with Lynley and I for a short period of time and that was separate from Sydney. She was tested from roughly 9:00 AM to 11:30AM with a 10 minute break. We then ran home to grab a bite to eat. After that we went back to the hospital where Sydney was quizzed for another hour or so. To say that she was completely worn out would be an understatement. She was mentally and physically exhausted. It will take a couple of weeks to get the final results back.
I would say that today is our first day back to reality this week but that would be a lie. Sydney's ear infection continues to be an issue and we have scheduled a clinic visit this morning. She continues to get a low grade fever in the evening, gook (technical term for the viscous liquid puddling in her ear) continues to pour from her left ear, and her ear continues to hurt. This could just be the byproduct of an ear infection that is taking a while to clear up but, none the less, they have asked to see her.
Is it just me or does it seem like Lynley and I never get a chance to work. Both of us are at our wits end. The work continues to pile up and everyday it seems as though we have something else to do. We are both feeling overwhelmed and buried. This is one of those battles that we have had over and over throughout our journey. We both want to be there for our children. As far as we are concerned our family comes first. It is especially important to both of us that we be there for Sydney when it comes to anything medical. We both like to attend her clinic visits, hospitalizations, evaluations, etc. It is important for us to be there emotionally but we also find that we make a good team. It is not that we don't trust each others judgment. We do. We just feel like we make better decisions when we are both there to participate in Sydney's care. The problem is that caring for a child with cancer and a family of five is busy and there is a tremendous amount to do. In fact, I can not remember the last week that I did not have to be out of the office for Sydney on at least two occasions. Don't get me wrong. I am not complaining. I want to be there. It just makes balancing life and work that much harder. I suppose that Lynley and I could take turns caring for Sydney and shuttling her back and forth to her many medical commitments but I really don't want to. I want to be there. I am her Daddy.
It is my purpose. Some times I just wonder how long others will put up with it.
5:02 AM 2/2/2005
Now this is the exact reason that you should not whine and complain. Guess where we are. Yep, room 3005, 3 north, Cook Children's Resort and Day Spa. I should know better. It could always be worse. I am officially being blamed for this hospitalization. There we were in the clinic. Sydney was getting a nice noodle full of Rocefin while watching a movie and I was behaving, sitting quietly in the dark room just tapping away at my computer. There had been a parade of healthcare professionals to visit us but Candy was our most recent Sydney inspector. Originally the plan was just to hop in to top off with some IV Rocefin. However, as the afternoon wore on, her fever would continue to climb. Candy and I gave her the once over. She seemed perky enough and her ears were on the mend. The only kind of unexplained problems were the all over aches and pains. In passing I mentioned that she seemed warm to me. This is the key point because the fever is what landed us in the hospital. Mind you they would have eventually taken her temperature. The always finish off a clinic "top off" with a blood pressure and a temperature check. Regardless, when they took her temperature she was at 38.9 C (102+ F) and that sent us packing. Of course, they all blame me. But I think they are all just big chickens because they did not want to face the wrath of Lynley when she found out that we landed in the hospital. By the time we reached our room on 3 north the word had spread. They were getting their words straight before Lynley showed up. "Yep, it is Mark's fault. Had he not pointed out the fever they would have sent you home." Chickens!!
So, we are here. Everyone believes it is because of the ear infection. Nobody really thinks we are dealing with something more sinister. No one has mentioned sepsis and no one thinks we will be here for very long. But, we are here - just in case. We will watch and wait - hopefully for nothing. I , on the other hand, need to learn to keep my mouth shut. No, not about the fever. I need to stop whining and suck it up, make the best of what I have. There are bigger fish to fry.
Got purpose, will travel.
5:50 AM 2/3/2006
Good Morning!! It is day 3 of Sydney's hospitalization. I imagine that we will be going home today assuming Sydney does not spike a temp and the cultures continue to come back negative. Our presence here is somewhat unfortunate. Everyone knows that Sydney's fevers were from the ear infection. Unfortunately, no one could say that it wasn't a result of sepsis. So, as part of the oncology protocol we need to be admitted for antibiotics and observation. We really have two problems. The first is the never ending stream of ear infections. As long as we continue to have them we will continue to have fevers. We need to find a way to curb them. The tube placement was supposed to curb all of this but with the rejection that did not go over so well. Next time we will plan to put in a different kind of tube which is a bit longer and less likely to be spit back out as quickly. In the meantime, I have suggested that we treat her ears prophylactically with bactrim. This should get us through the hurdle of our next round of treatment and into position to have tubes placed once we get back into town. The other problem is Sydney's port. The port and the risk of a line infection leading to sepsis is ultimately what lands us in the hospital. As long as we have the port in we will continue to find ourselves in this position. The port is great in that it (for the most part) takes the place of a peripheral IV. Because of the port Sydney does not have to have an IV placed every time she is at the clinic or in the hospital for treatment. So why should we get rid of it now? Well, for one, Sydney's port is well over a year old which is about as long as most oncologists want to keep it in. Secondly, she is nearing the end of treatment and the need for a central line is more just for the sake of convenience. However, when the risk on infection outweighs the convenience it is about time to have it taken out. So, for now we wait, but I imagine it will be coming out after our next visit to Sloan.
Well I best be off. I have a mountain of work to do and even a larger mountain in my inbox.
Our purpose is antsy.
4:29 AM 2/6/2006
Home, sweet home. We were discharged from Cook's on Friday morning. It is great to be home but I would not really go as far as to say that it was relaxing. On Friday evening we went out with the Robertson's and the Moncrief's. Sydney was ecstatic to see Truman and the gang and I was just thankful to be out and about town. With five kids scurrying around the restaurant I think we served as excellent birth control. For some reason Monty and his blushing bride no longer have any desire to have children after that experience. Now that I live in the land of parenthood I really have so much fun watching people who do not have children react to a table full of kiddos. There is nothing like the face of someone walking up to the dinner table when it is surrounded by five high chairs.
We had a pretty good weekend. We still have some open items related to our next trip to Sloan. We finally heard back from them at the beginning of last week and the good news is that we were to travel at our regularly scheduled time. The plan is still to begin treatment on February 13th. Unfortunately, we received a call on Friday afternoon stating that there was no room at the Ronald for us to stay. They had already moved our reservation to the following week and we were basically out of luck. The Ronald is going through a major renovation and they are short by about 18 rooms due to the remodeling. They are going to try and fit us in at some point but, for now, we are left scurrying for a place to stay. Diane is supposed to call us today and hopefully have a place for us to stay.
The other problem that we are having is related to one of Sydney's treatment drugs. On Wednesday she is supposed to start her GM-CSF shots. The problem is that we are having a heck of a time trying to find someone to fill it. Even the pharmacies that we have used in the past are saying that they can not get a hold of it. Today we are going to try a few other places and if worst comes to worst we will have to have it FedExed from Sloan.
Well, there you have it, our life in a nutshell. I had best be off. We are scheduled to meet with Southwest Christian School today and there is still a mountain of work awaiting me. This time, however, I will not complain about it. We all know what happens when you do.
My purpose is still in high gear.
5:02 AM 2/7/2005
Wow, yesterday was an incredibly busy day. Where do I begin? Let's start with Southwest Christian School. I was absolutely blown away. Well, I was not blown away by the facilities. They were adequate. But, everything else was borderline stupendous. I was amazed by the teachers, the teaching methods, and the whole philosophy of the school. The one thing that touched me the most though was the work of the children. I think the little Einsteins were incredible and I was in complete disbelief at the quality and level of work that they were doing. It was absolutely mesmerizing. Not only did the kiddos appear to be incredibly talented they also seemed to be truly excited in learning and engaged in the educational experience. They appeared happy and well-rounded. This won't be the last school that we will investigate but I am pretty sure it will remain near the top of our list. Sydney was evaluated for roughly 45 minutes. We were not present for the testing so I can't really tell you much about it. It will take a couple of weeks before we hear anything more. I am interested to hear their take on Sydney. It seems as though they would probably lean towards placing her in pre-K but we might all be surprised. With her age being in the middle of the summer she could really fit into either class. Looking at the size of the kids in the kindergarten class I would think she was probably a couple of years away.
After our visit to the school we dropped Sydney off at our school and then Lynley and I began our trek to try and find some GM-CSF. After several phone calls we were not having any luck. In fact, we had heard that the 500mcg vial of Leukine (GM-CSF) was actually being reformulated to be preservative free. This explained the difficulty in attaining the drug as the manufacturer was preparing to put the new version on the market. The only GM-CSF that we could find was the 250 mcg version. It is the same drug, the only difference is that it is only available in a powder (lyophilized) form. We have used both versions. Realizing that we were running out of time we opted to go ahead and just get the 250 mcg version. After a couple of hours we heard back from the pharmacy. The insurance company was denying coverage. Yes, brilliant BCBS of Texas, once again, was throwing their weight around. They wanted a preauthorization before they would cover the medicine. Let me put this into perspective for you. This is like an insurance company declaring that they would not cover regular strength Tylenol when you had a prescription for extra strength Tylenol (even if extra strength Tylenol was not available.). If that does not convince you of the ludicrousness of this then consider this. It is the same as if they would not cover Tylenol if it came in pill form and only if it came in capsule form. In our case, the only difference is the amount of the drug in a vial. It is ludicrous and frustrating and yet another great example of how BCBS goes out of their way to make your life that much more difficult. They figure we are too busy caring for our child to fight and the sad matter of the fact is that they are usually right. It is this kind of constant bombardment of denials that slowly breaks you down to the point that most people finally give up. It is criminal. Regardless, it would have been impossible to get the paperwork filled out and get an answer from BCBS so we elected to have the drug FedExed overnight from Sloan. Thankfully they still have the 500 mcg formulation.
The remainder of the day was much the same. We are still looking for housing for our trip to Sloan. I hope to get that clarified this morning.
It will be another full day of purpose.
5:14 AM 2/8/2005
Good Morning! Yesterday, marks the first day in quite a while that Sydney went to school, Lynley and I went to work, and Graham and Ainsley stayed at home with Martha and there weren't any doctors visits, sickness, schools to investigate, or any other reasons to leave the office. For me, it was a completely atypical and abnormal feeling. What was I supposed to do with myself? Work? Constantly? I don't know if I am capable of that anymore. I work under the gun, between treatments, in the hospital room, during naps, when my wife and kids aren't looking, on the floor, in the waiting room. I can' work in a quiet structured environment behind a desk. Where are the beeps? Where are the interruptions? Who can concentrate in such ludicrous quietness? I found myself constantly stepping out of my office and into the hallway looking for drama and searching for chaos. I was looking to make trouble but no one was around. Nothing, no one, quiet.
It sounds funny but I really could not concentrate. Perhaps it is because I have so much to do that I can't concentrate for worrying about what is next or maybe I really have lost my ability to work in quiet solitude. Regardless, I found it nearly impossible to concentrate yesterday. Because of it I accomplished almost nothing which is probably the last thing I needed to be doing. I hope today goes a little more smoothly. I was thankful for the opportunity to focus on work. Dear God I was thankful that Sydney was okay, that we weren't fighting disease, that we were all happy and all together. I am still vehemently aware that things could be so much worse. So, I am thankful for what I have. I just don't know what to do with it sometimes.
I have temporarily lost my focus but not my purpose.
4:21 AM 2/9/2005
I follow several other kiddos journeys. I am engaged in these families struggles and, at many times, in complete awe and shock at what they endure. I forget about where we have been and the continued risks the lie before us. Some days it is as if it never happened and it is as though I am watching it all through a looking glass. And just then, I am jolted back into our reality; our past, present, and future as another parents words so eloquently capture the essence of our lives. Today, this parent's words are what are ringing through my ears and tugging at my soul. I know that I could not find any better words.
Most likely this is an inappropriate entry, so I want to apologize ahead of time to my husband, to our immediate and extended families, and to our friends.
But sometimes the rules don't seem to apply or exist anymore.
Maybe this is a cyberspace equivalent to opening the window wide -- very, very wide -- and screaming from the top of my lungs "I'm as mad as
he** and I'm not going to take it anymore." But doing that from the 49th floor is not very safe. Not for anyone I suppose.
Yesterday, Monday: a fairly typical day for her, with the exception of the latter part.
Morning:
- first dose of bactrim, an antibiotic to help prevent pneumonia (pill crushed and mixed into chocolate milk)
- thyroid medication to compensate for thyroid damaged by previous rounds of extensive radiation therapy (pill crushed and mixed with chocolate milk)
- antibiotic to work in conjunction with oral chemotherapy (liquid mixed in with Diet Coke)
- anti-diarrheal medication to counteract side effects of chemo (pill crushed and mixed with something)
- anti-nausea medication for chemotherapy (pill taken with pineapple
juice)
- 3 chemo pills larger than Tylenol caplets to be taken whole. They cannot be crushed, broken or chewed.
- no more eating or drinking because of test later on in the day
Late Morning:
- visit to clinic, physical exam, access to port with needle through chest to draw vials of blood for blood count monitoring. Port flushed and taped up for future access.
- while waiting for results, i.v. placed in hand for injection of dye for brain scan
Early Afternoon:
- switch floors to radiology
- dye injected, head and body mobilized in scanner, and subsequent brain scan; i.v. flushed
- return to clinic; i.v. from hand removed; blood counts are back and far from great
- administration of third chemo through chest port; port flushed and finally de-accessed
- reports of brain scan are back and they're not good either
Late Afternoon:
- on the way home, stop by a toy store while listening to parents'
frenetic but timely cell-phone discussions with doctors about what to do next
- arrive home, some of the toys work; some don't
Early Evening:
- administer oral chemo directly from a syringe into the mouth. The most vial substance known to all of humanity.
- fever spikes to 101.4, accompanied by ear aches
Late Evening:
- ongoing telephone conversations with the doctors as to whether or not we should go to the E.R. and check in. A high fever could mean a possible blood infection through the port, an infection which in her case could be fatal.
- the fever brakes slightly so we decide to stay home
- second daily dose of antibiotic to help prevent pneumonia (pill crushed and mixed in chocolate milk).
Through all of this, where does one put all the anger? Where does one put pain, frustration, confusion, incomprehension, suffering and unfairness? Where does all the sadness go? Where is the strength supposed to come from?
But, most important, through all of this, HOW does one so precious manage to be a "normal" 3 year old kid, to be a teasing big sister to a devilish little brother, or an admiring little sister to the big, big sister? How does she manage to enjoy bubble baths as though she's slicing through a sumptuous chocolate layered cake she's about to devour? How does she continue to laugh so hard that everyone cracks up just from listening to her laughter? Or scream so loud when she can't get the tights on her baby dolls that the cats hide in fear?
That is where the strength MUST come from.
That is where purpose comes from too.
4:33 AM 2/10/2005
Here I sit on my last diary day before we head back to New York. Yes, on Sunday Sydney and I will be heading back to Sloan for another round of 3F8s. In some ways I am really looking forward to the trip. Although I will really miss Graham, Ainsley, and Lynley I am looking forward to the quality and focused time that I will have with Sydney. Sure it is cancer treatment time but that doesn't mean that Sydney and I can't use this time develop a deeper father daughter bond. I think that is an incredible opportunity. Think about it. How many times, as adults, in our hustle and bustle world, do we get he opportunity to spend two weeks of one on one non- interrupted time with our kids. How many times in life do you get to stop everything else in your life just to focus on the precious life that you are raising. You see, there are hidden treasures in the chaotic world of pediatric cancer. So, how do you see it? Over the next two weeks as you shuffle back and forth to work, as you are absorbed into the daily grind, as your children go back and forth to school I will be lucky enough to be spending one on one time with my daughter. Who is the unlucky one now? Of course, that is also sanity that is talking. I fully realize, however, that those rules may be difficult to apply in the insane world of Dilaudad that we will be stepping into. Hey, you have two ways of looking in and around this world but it is your choice. Is it opportunity or is it just another cancer world beating.
On another note we are still searching for a place to stay. I know that sounds completely ludicrous. It sounds as though we are completely unprepared but we are not. Unfortunately, we probably won't know anything about availability at the Ronald until this afternoon. I have checked with the hotels that are close by and they are either full or they do not offer refunds if we make a reservation. To make a long story short, we are stuck in hotel limbo. Hopefully we will receive a call this afternoon confirming a room but if not - well - we will get on the phone and get to work. In the meantime we will just wait.
I had better be off. It is another work day and there are mountains of work before me. Tomorrow, however, all I have to worry about is my purpose.
4:53 AM 2/13/2006
Sydney and I are still safely at home. Our flight to LaGuardia was cancelled due to the white out and we have been rescheduled on another flight this morning. Unfortunately, there were no direct flights available so Sydney and I will be flying to New York via Austin, TX and Houston, TX. Instead of flying our normal 3.5 hours we will by flying some 9 hours or so. It will be a long and trying day for us road warriors and I imagine it will be about 8:00PM at best before we arrive at the Ronald.
Well I had best be off. There are last minute items to pack and we have a long day ahead. Hopefully I will be able to find my purpose some distraction.
3:56 AM 2/14/2006
Good morning New York! We made it! At 9:40 the non-napping, 9 hour traveling, twerp extraordinaire finally closed her eyes and drifted off into sleepy land. I have to be totally honest. She was a great little girl almost the entire day. In fact it was only during the last five minutes of the last leg of the last plane flight that my princess, full of guilty sugary sweets from Mom, made the transformation. She had finally hit her limit and she was both wiped and hyped when she began the barrage of "Are we there yets?" all the time knowing full well that the plane had not landed. In fact, quickly learning that I was not playing along she decided to play along with herself by asking "Are we there yet?" and then answering "no!" to the delight of all the other passengers. It took a minute or two to quiet her down and then she began the "copy cat" game. Yes, she decided to copy everything that I said. "Sydney, stop saying that please." And then she would respond in a whiny voice "Sydney, stop saying that please." Of course, she did not realize that she was merely spawn of the master annoyer and I quickly had her under my spell and cowering to my Bugs Bunny level of wit. No four year old can compete with me. Oh, how proud I am.
Regardless, we made it off the plane unscathed. The airport was packed and it was a pretty high stress environment. Sydney and I, however, were having a blast racing through the crowds. Luckily we did not incite any riots but we had a pretty good time. I could just imagine the look of disapproval on Lynley's face had she witnessed us first hand. It took a while for our bags to arrive and then we were quickly ushered out into the cold where we found a line of nearly 300 people waiting for a cab. Sydney and I opted to get an overpriced ride from one of the limo drivers that was looking for a fare back to Manhattan. It was twice the price but well worth it for the immediate satisfaction and comfy ride in a Mercedes.
We arrived at the Ronald at a little after 8:00PM. Allie, one of our good friends in New York, was nice enough to come over and read to Sydney while I jetted back out to get some groceries, etc. It made life much easier and I was extremely appreciative. We finally made it to sleep at almost 10:00 and my princess seems to be resting comfortably. I will probably let her sleep in as she has an extremely busy day ahead of her. Today will be the first round of treatment for this cycle. I have to run. I have to perform some home toilet repair via instant messenger.
Husband Alert!!!! It is Valentines Day!!!!
Purpose here, purpose there, purpose everywhere.
4:49 AM 2/15/2005
As has become the norm, Sydney had a pretty rough first day back Treatment was fair. Her pain came early at only about 15 minutes into the infusion. We treated the pain with another half dose of Dilaudad but it did not really do the trick. Lynley and I had contemplated giving her another half dose but the monitors really did not support that conclusion. Her heart rate remained around 100. For some reason there was a significant amount of moaning without anything really supporting it on the monitor. I really hate it when Sydney is in that condition because it makes our job as parents that much more difficult. Do we treat the pain and put up with the late side effects or do we work through it? We did eventually give her more pain medication but it really did not seem to offer much of a difference. She would continue to complain of pain for quite a while after treatment.
When we got back to the Ronald Sydney fell asleep and that is how she spent much of her afternoon. She would not wake up until after 4:30. We then went to the toy store around the block and to dinner down the street. About 10 minutes into the meal Sydney started to complain that she did not feel particularly well. We rushed the rest of our Valentine's dinner and made our way back to the room. The next two hours would be filled with nausea and trips to the laundry. Sydney was vomiting in full force and the nature of the beast would not allow her to predict when it would raise its ugly head so I spent a lot of time washing sheets, blankets, and you name it. If it was in four feet of her it was in the blast zone and in dire need of a washing. These episodes went on until about 8:30 PM when finally she fell to sleep.
I woke up many times throughout the night to find Sydney whimpering. I tried to talk to her but she just never really would respond. When I finally decided to really wake her to diagnose the problem it was as if it never happened. She just wanted to go back to sleep. She would continue to whimper, off and on, until well after midnight. So, as you can see, it certainly was not a stellar treatment day. Thankfully we know the routine and I know that I can expect to see some improvement for Sydney today.
All of that seems much too depressing so I have decided to share a funny first day story. I was really paranoid about making Sydney look beautiful. I knew that without her mother there all eyes were on me. I knew Lynley had her spies making sure I was doing my job. She had to be dressed correctly (if not cutely) and perfectly coifed. I was prepared with detangler and comb in hand. I wasn't playing games. I did her hair when we left and, realizing her hat could cause problems, I carried a comb and bottle of detangler in my back pocket. In fact, as soon as we got there I did her hair again. Marie was our nurse for the day. She is one of our usuals. Sydney was glad to see her and gave her a big hug while she was hooking up her noodles. Once again I was prepared with the detangler and comb close by in case any of her hair was distressed by all of the emotion. All of a sudden Sydney looked up at Marie and then looked over at the detangler. Sydney grabbed the detangler and looked straight at Marie. "Marie you should use this, it will make it so your hair is not so crazy and it will help to get the tangles out. You want some?"
Marie has an afro.
See, although some days your purpose may seem awful, single events like this can sustain you forever.
4:01 AM 2/16/2005
Yesterday was better for Sydney. We arrived at Sloan (detangler in hand) at about 8:00 AM but she would not start until roughly 10:15. The pain from the antibodies was more intense today The first episode came at about the midpoint of treatment (30 minutes in). She complained of "belly owies" but her heart rate wasn't elevated at all. We treated it anyway. Unfortunately it really did not do the trick. Within minutes her heart rate shot up to the 160s and 170s so we gave her another half dose relatively quickly. She would remain in her state of uncomfortable rest for the remainder of the treatment. Usually, at the end of the treatment, Sydney just sleeps it off. She is never really comfortable but the Dilaudad seems to keep her out. Yesterday, however, that was not the case. For some reason, about ten minutes after the infusion she began crying and complaining about pain in her belly. I just assumed that this was another wave of pain that would go by quickly. After all, she was loaded up on pain meds and the treatment was over. I tried to comfort her with cold and hot packs but she would have nothing to do with them. After about ten minutes of this, however, I called one of the nurses in who agreed that we probably needed to treat the pain. Sydney received another half dose of Dilaudad. This one really did the trick. The effect was almost instantaneous. She rolled over and drifted off to sleep. Sydney would sleep the rest of the afternoon away at the day hospital. We left our room at about 3:30 for the play room and we literally closed it down. We arrived safely back at the Ronald at a little before 5:00 PM.
In the evening Sydney complained of nausea but nothing ever erupted from my little puke volcano. She would fall asleep comfortably at about 8:30 and she has rested, moanless and whimperless, throughout the night.
I spent much of my day socializing and talking about my favorite subject - neuroblastoma. I know that sounds strange. Yes, it is engrained in my psyche and it has become part of who I am. I learn something new everyday and it always feels good to share stories and talk to other parents. On occasion I am able to comfort another parent and that is like chicken noodle soup for me - it just warms the whole body and soul. One of the nice treats for me has been the opportunity to talk to David, Emily's dad. Emily is the little girl that I have discussed on an off for the last month or so. She was diagnosed with relapse a little over a month ago and they have been up at Sloan fighting to win the battle all over again. The good news is that she appears to be doing well and the potentially great news is that the type and location of her relapse could be indicative of a good outcome. There is really too much to go into here but I was really pleased to talk about it with her Dad. I don't ordinarily expect good results for kiddos with relapsed neuroblastoma but circumstances surrounding Emily's give me reason for high hopes. I spent the remainder of the afternoon talking to another family as Sydney snoozed away. Talking to others in our situation really comforts me but it always reminds me of how much more needs to be done to save these kiddos. We have to find the silver bullet. There are too many great kiddos at stake.
Purpose reloaded.
5:04 AM 2/17/2005
As anticipated yesterday was much better for Sydney. We arrived at the hospital at about 8:00 AM. Once we settled in Sydney and I ran down stairs to the cafeteria for a little breakfast. I have been concerned that she has not been eating or drinking enough so I have taken every opportunity to fill her up. I gave her the opportunity to choose anything that she would like to eat. She chose bacon, sausage, watermelon, yogurt, Rice Krispies, and oatmeal. I knew that her eating everything that she picked out was an extreme long shot but I was hoping that she might eat at least one of the items she chose. We purchased the goodies and made our way upstairs. As soon as we made it upstairs we were steered back into Yichih's office for a checkup. The impromptu appointment went smoothly. Sydney was tolerating treatment pretty well. She decided to run an electrolyte panel just for good measure. We made it back to our room at the day hospital and began to eat. Well, I began to eat. Sydney wasn't hungry. I enjoyed the bacon and sausage. Sydney sniffed the fruit. I had some cereal. Sydney tasted the oatmeal and spit it back out. The yogurt remained in its container. After about thirty minutes I finally convinced her to eat some dry cereal and have some fruit.
The actual 3F8 treatment went much better and it seemed far more typical She had two half rescues nearly back to back at about the midpoint of treatment. The doses did a fairly good job of pain coverage and she spent the remainder of the treatment in the "zone." Sydney slept off the remainder of the morning and a little of the afternoon. She woke up in a good mood and we made it back to the Ronald at a little after 2:00PM. Sydney and I had a good afternoon and even went for a long walk. We capped off our lazy walk with dinner at the Wicked Wolf where Sydney ate a bowl full of bowtie pasta. Once we arrived back at the Ronald we went to the dining room were we found a do op group entertaining the kids. Sydney had her face painted, listened to the singers, and danced as I chatted with many of the other parents. We finally made our way back up stairs and to the room at about 8:00 PM. Sydney drifted to sleep at about 8:30 PM. All in all it was a pretty enjoyable treatment day.
I like purpose like this.
4:02 AM 2/20/2005
Sydney and I had a pretty good weekend. Unfortunately it was pretty cold outside so we did not get to venture out too much. Luckily there was plenty of fun to be had around the Ronald. It all started on Friday night with an evening of dancing. Sydney and I went down to the Dining Room where we found "the guitar man" from the park strumming and singing away. Sydney and I danced and had a great time. Later in the evening there was even a birthday party and Sydney indulged in the ice cream cake and a raucous round of pin the spider on Spiderman. That night she made several friends who would turn out to be her playmates all weekend.
On Saturday morning Sydney and I visited with Allie over breakfast. We then set out over the big cold world to do some shopping. After all the big Dudely will be 2 years old the day after we get back home. Note that I said the intention was to get him a birthday present. We went to Barnes and Noble for some books, Best Buy for a new web camera to see mama, and we made it to Toys 'R Us in Times Square to shop for Graham We spent a good 2 and a half hours in the store but all Sydney could find that she thought Graham might like was a complete set of four "My Little Ponies." Now, I pointed out to her that my big manly son would not appreciate those girly toys but Sydney assured me that he would. In the end, I purchased the 4 little ponies and we made our traditional trip across the street to eat at Bubba Gumps. Once seated Sydney suggested that I unwrap the ponies so that she could make sure that they were good. I guess they are kind of like fruit and they might spoil. I know I shouldn't have but I obliged. After all I knew my big hairy son would not want those wimpy little pink and purple herbivorous quadrupeds. After playing with them for a while she spent the remainder of the weekend convincing me that Graham probably would not like them and that she would graciously keep them for herself.
The rest of the weekend would be spent indoors. Luckily, as I mentioned earlier, she had a gaggle of friends to play with which occupied her busy mind, body and soul. It also gave Daddy a nice little break from being the entertainment center du jour.
Today we will be back to the grind and our purpose.
3:29 AM 2/21/2005
Yesterday we started out with a bath. I point that out because I want it officially documented for Lynley that not only did I keep her princess duly coifed but I also kept her clean and sparkly. It was a long Monday. We arrived before 8:00 AM but it was well after 11:00 AM before we began. It was a very slow day. The good news was that Sydney's musical playmates had arrived and they would stay their to assist me with pain management. I just can't get past thinking of it as musical voodoo but the fact of the matter is that it works. Sydney was more expressive with her pain yesterday. In other words, she cried out more frequently. However, she was clearly in less pain. Her heart rate spent the majority of its time in the 120s with only a few spikes up to 140. This was 30 beats less than her average for the whole of last week. It certainly seemed that she did not have the usual intensity and she found her comfort spot relatively quickly. I would learn that it was good for Sydney to verbalize her pain (whether talking, screaming, or crying) because it gave her control of the situation. Eventually it would help her to find the zone more quickly. The pain came at about the midpoint of treatment. She would spend the next 10 to 15 minutes trying to get control of it and then spend the remainder of the time dealing with moments of sporadic waves of pain. All in all it was a pretty good treatment day.
Sydney slept off the medications at the day hospital and eventually we made our way back to the Ronald in the late afternoon. She spent the next couple of hours watching television and playing with "Graham's" little ponies. At dinner time we made our way down to the dining room where Dallas BBQ was catering. I waited in the serving line as Sydney stood guard by the elevators hoping to see her friends just as soon as they made it downstairs. Eventually I convinced her to sit down at the table and eat and just as soon as I had done that all of her friends showed up. Sydney ate dinner hurriedly, excused herself from the table, and went to play with the other girls. She would play with Allie and Jenna for the remainder of the evening.
I know Sydney will be sad because today one of her friends will be going in for surgery. This morning Jenna's parents are preparing to take her over to the hospital for some fairly extensive surgery. She has two tumors that will be removed from her head and a special catheter will be placed to deliver medications to the brain. If I understand the term correctly it is called a double craniotomy. I can only imagine the stress and worry that this family might be feeling. Sydney and I will be going through treatment today but you can bet that my thoughts and prayers will also be with them. It will be a long and hard day for this family. Many of us have been in this situation or in a similar one so we know how it feels. Knowing prayers and positive energy are coming in your direction does wonders and is sometimes the only comfort in what will be an extremely trying day.
Today we all have purpose. Our prayers are with you Jenna.
3:28 AM 2/22/2005
Sydney had a little more pain yesterday and it was definitely more intense. I am hoping that today we can do a better job at controlling it. I guess there is always something to adjust and once you get all of the drugs set just how you like them everything seems to change. Yesterday was just such one of those days where we never really seemed to get control of the pain. Sydney keeps tricking us. She starts complaining about the pain just as the flush begins (this is the midway point). However, her heart rate and general disposition do not indicate that she is in pain. She generally finds her zone and deals effectively until the next wave hits. All of a sudden however her heart rate will begin to shoot up and by the time we get the drug in we just can't seem to get on top of it and she spends the remainder of the treatment in a fairly miserable state. We have two issues at play here. First, some kids fake the pain a little just to get more "sleepy" medicine. We have heard of kids that have been in a good HAMA (no pain) all week and have faked the pain to get more "sleepy" medicine. Now, I am not saying Sydney is one of these kids but it is one of the things that you have to consider especially in light of the side effects. The second issue is that we try to give Sydney as little pain medication as possible. We fully realize that she endures more pain but the fact of the matter is that by reducing the amount that she is given it actually improves her quality of life while here. I don't think the term "no gain, no pain" is necessarily appropriate here but it is certainly true. By enduring a little more pain in the morning she is given the gift of a pretty normal afternoon and evening and she is not plagued by Cybil, her evil Dilaudad induced twin. I think this decision can be different for every family and for some lucky ones where the Dilaudad has no lingering effects the question is mute. Some prefer to cover the pain as completely as possible even though this often means a complete afternoon and evening in bed. We just believe that a normal afternoon is what Sydney would prefer given the choice.
Sometimes purpose is subject to interpretation.
5:20 AM 2/23/2005
As you can see I am up a little late this morning. I admit it. I am 35 and I am addicted to American Idol. I am sure that there is an appropriate 12 step program for me. The good news is that I got much of our packing and laundry done last night. Sydney had a pretty good day of treatment. It was fairly typical. There was the requisite about of pain but she seemed to recover fairly well. We were only visited by Cybil for brief periods and other than the fact that she would not take a nap or rest in the afternoon I was pretty impressed. She has rested comfortably throughout the night and I imagine the she will awake raring to go.
Unfortunately, I woke up late this morning and there is much to be done before the princess rises. I had best be off.
Another full day of purpose ahead.
6:07 AM2/27/2006
Home again! I did not get a chance to write on Friday morning. We were far too busy packing and getting ready to go. Sydney's last two days of treatment went very well. In fact, Friday I found myself in utter disbelief. Sydney made it through treatment with only a half loading dose and no rescue doses of Dilaudad. My original plan was not to skate through Friday's round without any pain medications. I actually felt pretty guilty as if I had unnecessarily put her through unnecessary pain. I knew rationally, however, that I had done everything I could to make her comfortable. It was just one of those strange treatment days. Jacqueline, one of the pain management / music voodoo priestesses, was there to help Sydney through the pain. As usual, I was completely shocked by the power of distraction as a pain management technique. By the time Sydney realized she was having pain the treatment was almost completely over. With a few minutes to go, her heart rate started to climb and when we finally decided to treat Sydney with some pain medication which she angrily refused. In an effort to give her some control over her treatment and her body we honored her wish not to treat the pain. Somewhere she dug deep and within minutes the treatment and our trip to New York were in the history books.
The plane ride home was delayed due to high winds. Although we were anxious to get home we made the best of it. Sydney made a slew of friends as she danced and hopped her way through the terminal. By the time we boarded the plane Sydney was on a first name basis with just about half of the plane. She would sleep most of the way home.
We arrived in DFW about an hour late. Sydney was so incredibly happy to see her mommy. So was I - adult conversation at last.
The remainder of our weekend would be spent in celebration of being home but more importantly, little Dudely's second birthday. Although we kept things fairly low key and relaxed we spent the entire weekend just being a family. I don't know whether Graham ever really realized it was his birthday but I can tell you that he was having one of the best times of his life. He had his Sissy and his Daddy back. Our family was home and together.
That is what purpose is all about.
4:17 AM 2/28/2005
Yesterday was almost our first day back in reality. I say "almost" because there were still doctors appointments, etc. to contend with. Sydney's first appointment of the week was with audiology. I admit it I played reverse hooky. After being out of the office for two weeks I knew it was in my best interest to head back into the office. Lynley took the reigns and escorted Sydney to her appointment. From what I understand the appointment went pretty well. They turned up the volume in her kitty ears a hair, made new molds of her ears, and evaluated her hearing. In the end, Sydney's hearing loss has maintained itself. This is good news. In other words, her ears have not continued to deteriorate which could happen for several years after treatment. They did advise us that we needed to start visiting a speech therapist and so we have added a speech therapy appointment to our repertoire. The remainder of the week should be relatively uneventful. We still need to schedule an appointment with Sydney's ENT to have the tubes in her ears replaced, we need to schedule our HAMA draw for next week, we need to schedule a CT scan to take another look at the spot on her lung, we need to meet with her doctors to discuss having her port removed, we have an upcoming appointment with the dentist, and finally, we need to find a speech therapist and set up an appointment. All in a days work, right?
Sydney, Graham, and Ainsley; the twerp squad, are still reeling. They are so happy to be back and torturing each other. Ainsley , of course, receives the brunt of the abuse but she is ultimately the sneakiest. She is now crawling and pulling up on everything. It is amazing how much she has grown in the two short weeks that we were away. She is constantly chasing her brother and sister around and is therefore subject to their bad driving and lack of attention. She is like a ping pong ball between the two of them. It really is like a great episode of the three stooges. Graham will open the door of his car into Ainsley's head which will then fly back onto the ground to be sat on by Sydney. Ainsley's feet will fly up in the air kicking Graham in the "who ha" who will bend over to see what happened and bonk Sydney in the head. And, of course, this all happened in the first five minutes that we had together last night. I hate to call my kids dumb, dumber, and dumberer and thankfully actions speak louder than words so I need not worry about it. Regardless, I am thankful to be back in the chaos that is our normal.
This is my purpose and this is what it is all about.
5:54 AM 3/1/2005
Good morning! It was a somewhat sleepless night around the Dungan household. For some reason, two thirds of our stock decided it would be a good night to wake up every hour on the hour. Ainsley has been pretty much trained to sleep through the night, however, every once in a while she will wake up and demand to be fed. Most of the time we have obliged this urge simply to keep the noise from waking the others. This habit isn't so bad when you have a single child. Waking up occasionally in the middle of the night is something you should expect as a parent. However, when you have three children and you encourage the behavior this only adds up to many sleepless nights. For this reason we decided to correct our "encouraging" behavior and last night we put an end to it. Boy, are we paying the price. Ainsley is stubborn but she is a clever little one. She is easily trainable and I know that with a few more nights of "stick-to-it-tiveness" her sleepless nights will be a thing of the past. Believe it or not, Graham is the major problem. I don't know how we created the monster but I can safely say that I can not remember a time when he slept through the night. In fact, I don't think he ever has. Actually, I know exactly how we created the monster. We never really gave him the opportunity to learn how to calm himself during the night. We always rushed in to calm him because we did not want him waking up everyone else. Unfortunately, it has now grown to truly annoying proportions. Now he wakes up every night and starts screaming at the top of his lungs. Everyone is immediately awoken. Worse yet, Graham will continue to get louder until his needs are met. His needs seem ludicrous. They are usually something like pulling the blanket up over his chest when it is at his waist or pointing out that the pacifier that he is screaming about is, in fact, in his mouth. The point is not what he is crying about. It is about his comfort which is ultimately what the nightly routine is all about. We have never given Graham the tools to calm himself. We created the monster and everyday that we continue to feed it it will continue to grow and get worse. It is time to draw the line.
It will be a sleepless week of purpose but I never forget that this is good sleeplessness.
6:31 AM 3/2/2005
There were two and a half hours of screaming last night. We are all tired. Need I say more?
5:39 AM 3/3/2006
Unfortunately, this is going to be another relatively quick update. Yesterday DeeDee fell and broke her wrist. We ran her up to the emergency room and it turns out that she will need to see a specialist to set it. So, to make a long story short, I have been helping her out and, in fact, I stayed the night over at her house last night. She is a pretty tough cookie but you would be surprised how many things require two hands - opening the bottle of Vicodin for one. The pain meds have left her a little light-headed and I have just stayed around in case she needs any help. I am getting ready to run back down to my house (only three blocks away) to raise the rug rats. I can only imagine Lynley had a rough night. Here's hoping I am wrong anyway.
It will be a purpose full weekend.
4:14 AM 3/6/2006
Well there, now that I have given up sleeping I have much more time to write this morning. That is not to say that I will make any sense or that one sentence will have to do with the next. It was pretty much the whirlwind weekend that I had anticipated just with a lot less sleep. Where do I start? Let's start with some good news. Graham has not been the reason I have been getting up at night. In fact, he was not the reason I got up Friday or Saturday night. I simply woke up with him one time last night. I don't even remember what he wanted. Regardless, he woke up. I told him to go back to sleep. He did. Pretty simple. Then again, I have become an expert at telling kids to go to sleep in the middle of the night so it may have been due to my acquired skill. You might think that since Graham was sleeping so well the rest of us would be sleeping well but you would be wrong. Sydney has taken off where Graham dropped the ball and she has made a concerted effort to wake everyone in the house (except for Graham which is really ironic) two to three times per night. All of this was precursor to the fact that this morning at 3:30 AM she announced that she had another ear infection. Additionally, her eye is turning red and we are pretty sure that she has caught the conjunctivitis floating around her room at school. Lynley and I are scrambling to get her treated before this gets any worse. I hate to say that we have a busy week ahead and a hospitalization for a fever would be really inconvenient but I am going to say it anyway.
The week ahead is already in full gear. Last Friday I went with DeeDee to meet Dr. Collinger. He is the orthopedic surgeon that specializes in broken bones. Basically, the top (the knobby part near her wrist) of her radius bone has broken off and the surgeon needs to run down to Home Depot and buy a T-bracket and some screws and then put Humpty Dee Dee back together again. Her surgery has tentatively been scheduled for Wednesday morning and they have estimated that she will spend roughly a day inpatient to recover. That would put her in on Wednesday morning and out on Thursday. On Thursday afternoon I am supposed to be flying to LA for the 6th Annual New Approaches to Neuroblastoma Treatment (NANT) Consortium Meeting. I would love to say that it is critical that I am there for this high powered discussion on neuroblastoma but I am simply there to listen and to make the presentation of a fairly large research funding grant. Is it critical that I am there? Of course not but I sure would like to be there to see our research funds in action. So, as you can see, that obligation is only partly selfish. The fact that I would have two nights alone in a quiet hotel room would be completely restful and that would be considered entirely selfish.
Other things going on in our lives are work and the normal day to day grind. One exciting thing that has happened this week has been the dream vacation to Disney World for Paul Saxon. I have not heard from them in a couple of days but on Thursday evening I met them up at beautiful Cook's Resort and Cancer Spa to deliver a bag of goodies for their trip. Paul looked really well. In fact, he looked great for everything he has endured over the past year. For those of you that may not remember, Paul relapsed about a year ago and has been back and fighting this disease with chemo ever since. They had just about used up the effectiveness of the Topotecan and Cytoxin combination and have just recently switched to Oral VP16 while they wait for the HU14.18 antibody trial to reopen. The good news is that the low dose chemo regimen has left him feeling wonderful. He and his brother were incredibly excited and bouncing off the walls. I really hope that this trip turns out to be wonderful for them.
Well, I had better run. As you can see, there is quite a bit going on and now I have to figure out which doctor to schedule an appointment with for Sydney. We know the ear infection will not clear with the usual battery of antibiotics and we are anxious to nip it in the bud. We are hoping to step right into the big guns. IV Rocefin to go anyone?
It is easy to forget you have a purpose when you are not constantly reminded. In that sense I can be thankful.
5:32 AM 3/7/2005
Hopefully we are back on the right track. Sydney has been treated and now we wait. Yesterday was a somewhat normal day. Sydney went to the doctor's office in the afternoon. I stayed at home with Ainsley and Graham. Dr. Debbie apparently loaded Sydney up with drugs. While in the office she received Rocefin shots in both legs. Sydney was also given a script for ten days of oral Clindamycin and some eye drops. Hopefully this battery will clear up the ear infection and the possible conjunctivitis. She was fully medicated. Exactly as we had hoped. Sydney was not nearly as excited. She was not used to receiving her Rocefin via injection. She was still limping as she got home and was milking her wounds for everything that they were worth. I was sad that she had to have shots but I must admit I got a chuckle out of the extraordinary leg drama. Of course I was sympathetic on the outside but I was giggling on the inside. Every step she made was like her last as she struggled for every inch as she made it across the carpet to my loving arms. Oh the pain. Oh cold cruel world. My God Daddy it hurts so much but my love for you is so strong I am able to drag my weary wittle beaten body to your arms. All of a sudden Graham darted through the room and out to the playroom with her "My Little Ponies." Sydney was caught mid stride and went running after him. Not another thing was mentioned about her legs. That is until it was time to go to bed. Then, of course, the drama began again as she struggled with every drop of fortitude to make it back to her bedroom. She, of course, made this journey to please her father and mother whom she loved so very much.
Dee Dee's surgery is scheduled for tomorrow morning. I will be taking her much earlier but I believe the actual surgery is scheduled for 9:00 AM. Today she will be running in for a little blood work. She has really handled this very well. I am somewhat surprised. I have never had a major break but I know for sure that I would not have been nearly as strong as her. She has complained very little and has just kept moving on. I am more like Sydney handled the shots in her leg and I am sure I would be milking it for everything that it was worth. Well, not in front of my kids. Regardless, she is truly handling it like a trooper and she seems to be doing extremely well.
I am really excited about my upcoming trip to the NANT meeting. I just got my confidentiality agreement via email. It basically read "You are invited because you fund neuroblastoma research - keep your mouth shut and listen but you will hear some very, very cool stuff. Just don't tell anyone." This ought to be a very interesting journey for me. I know I will hear the cold hard facts about this disease and the true effectiveness of the various treatment options. They will speak candidly and I know, at times, it will be difficult to hear. It will be interesting to see which Mark processes the information. Regardless, it will help me better understand the disease and various treatment options. As a result of this trip we will make better funding decisions. This opportunity is truly a gift. I will literally be a fly on the wall as some of the greatest minds in neuroblastoma research discuss the disease.
My purpose will be nourished.
5:17 AM 3/8/2006
This will be a quick update. Today Dee Dee's surgery is scheduled at 9:30 AM. I have to have her at the hospital at 6:45 AM. The surgical procedure is expected to take just under an hour, however, she will remain in the hospital for at least 24 hours.
I am happy to report that the kiddos are all doing well. Sydney seems to be walking the fine line between sickness and health. It has now been almost two days since she has complained about pain in her ear. Her nose continues to run and she has a pronounced cough but other than that seems to be doing well. You certainly can not tell that she has a raging ear infection by looking at her
Yesterday was a fairly normal day around the Dungan household. Dee Dee joined us for dinner The kiddos were incredibly excited to see her and their excitement could be seen in their behavior. They went absolutely nuts. There was running and screaming and yelling. It felt like we were on an episode of the "Super Nanny." It was complete chaos and it took awhile to wrangle them all in and resume our parental control. I think they saw our concern for my mother's boo boo and interpreted it as a weakness, a chink in our authoritative armor. They immediately dispersed and began by trying to establish their own government. Realizing that we were paying attention to Dee Dee and not to them they figured that they could engage in some sort of self rule. They grabbed whatever they could in an effort to establish a pecking order. Graham grabbed a hose, Sydney a broom, and Ainsley, well Ainsley, she grabbed a stuffed animal (she hasn't quite grasped the concept of tyranny or parental coup de tet) It was warfare. The idiots (I mean my beloved children) began running around, beating, and/or spraying anything and everything they could see. It was as if a little switch had been flipped in their little brains. Regardless, it took a concerted effort to care for the war wounds and bring them back under control. It made for an interesting evening to say the least.
Well I had best be off. As I mentioned earlier, it will be a full day of purpose.
5:31 AM 3/9/2006
I am happy to report that Humpty Dee Dee has been put back together and it did not even take all the king's horses and all the kings men. Listening to my mother tell it, all it took was her hunk of a doctor and his sidekick. To make a long story very short, the day went by perfectly. We arrived at about 7:00 AM and we were home by about 2:00 PM. Dee did not even have to spend a day inpatient in the hospital. Sure there were small snafus along the way like the fact that the surgery started an hour and a half late, the secretary in the recovery room (the one in charge of keeping me informed as to my mother's progress) ended up in the ER herself, and there was some difficulty getting my mother's pain medicine from the pharmacy. All in all, however, the important thing was that my mom sailed right through and I hope she rested comfortably last night. It was interesting seeing the behind the scenes action in an "adult" hospital. So much was the same and yet so much was different. For instance, there was no play room to take Dee Dee before the surgery and she didn't get one single sticker for giving blood. However, the bulk of the activity was nearly the same. I was really impressed with the facilities and organization of outpatient surgery. It was interesting to see the volume of patients that they put through there.
This morning Sydney will be going to the clinic for her HAMA blood draw. We will also be having a quick check up. Last week we had heard rumor of the possibility of a CT scan to reassess the presumed air space disease in her lungs but we have not heard another word sense. That really works out just fine with me because I would not feel secure leaving town while test results were pending. As I have grown throughout Sydney's journey I have also become more superstitious (something I never was before). I just don't ever feel right not being with my family while we are waiting for test results. We need to be together for the good and the bad.
This afternoon I will be leaving my wife with the lord of the flies et al and I will be stepping onto a plane. I am going to the NANT Consortium meeting in LA. I am incredibly excited and I can't wait to get there. I think it will be quite an educational experience and I am interested to see the leaders in the neuroblastoma world in their element. I will be back on Saturday evening. Hopefully, it will be in time to rescue my blushing brides sanity. I would say that I feel real bad about leaving her for a couple of days. I could say that I really won't appreciate be surrounded by adults and adult conversation. I could also say that it won't be a big deal to sleep in a nice quiet big bed but she would know it was all a horrible lie. Jealousy reigns supreme in our household.
I will miss my purpii but I won't be going with out them in my heart.
5:36 AM 3/13/2006
I am home. It was an incredible trip and I find myself torn. Part of me is so incredibly intrigued by the question that is neuroblastoma. It is a fascinating and complex disease. The other part of me, however, was every part a dad of a child with this horrible disease and he came away from this experience terrified. The cold heart facts don't lie and the reality of the situation that we are in seems grim. Not many kids with Sydney's staging and breed (n-myc amplification) of neuroblastoma survive and we are nowhere near the point of breathing easy. The fact is that she still fits easily fits in to the groups of both survivors and those that have succumbed to the disease. Unfortunately, the group of survivors is incredibly small and the battle is not over. In this sense it really was a spine tingling event. I learned a tremendous amount and if I could have gotten beyond the fact that I have a child with neuroblastoma I would have considered it one of the most fascinating experiences of my life.
The NANT Consortium was really far more organized than I had understood. I knew that it was a group of neuroblastoma specialists that had come together to work collectively to identify new approaches to treat neuroblastoma. I knew their names and the reputations of probably 90% of the pediatric oncologists in the room. I recalled seeing many of the researchers names in the hundreds of abstracts that I have read. There really is too much to go into in one day but I must admit I was impressed. The fact, however, remains. For the most part, these oncologists (primary investigators) treat our children everyday. They are not that unlike any pediatric oncologist out there roaming the halls of any hospital that you come across. During the day they care for our kids. They give check ups. They perform procedures. On some days they even get to go home at a reasonable hour to spend time with their families. Some of these doctors will remain on call and on duty but all of them will then put on their thinking hats, their researching beanies, and their life saving crowns; and go to work on their second part of their day. This is the time that they get to study our disease and review their work. This is the time they spend trying to cure the disease. They are searching for our answers. They are our heroes and are dedicating their lives to saving our children. It is a noble profession.
Many have asked whether I spotted the silver bullet while at this meeting. Are they anywhere close? Do they know the answer? Unfortunately the answer is "no" but, to be honest, they are doing far more to solve this enigma that I have ever known. They are trying hard and every day they are getting us that much closer. On any given day there are people going to work with nothing other on their mind but to cure this disease. It will take time, resources, and a new way of thinking to get us their any sooner.
This experience has reenergized my soul. Yes, it was nice to present such a large check on the behalf of all of our families and children. I can assure you that the doctors of the NANT were mesmerized by the fact that their funding was coming from lunch money and a group of students at a high school. We received a standing ovation and I cannot even begin to tell you how many of them took the opportunity to thank us (you and I) for our dedication to their work.
For me the pieces are starting to come together. I have new ideas and direction. I can see a light at the end of this tunnel. There is an incredible opportunity here to create some truly substantive change. I feel empowered. We as parents can create change. We can speed the path to discovery and we will save lives. Over the next few days I hope to get my ideas out of my head and down on paper. I can not do this on my own and I will need your help.
My purpose has been reborn.
4:57 AM 3/14/2005
What an extraordinary night of rest. I feel completed rejuvenated. It is quite strange to have such a great night of rest at the Dungan Motel but I am happy to say that if I slept well then everyone else in my family must have as well.
The kids are doing wonderfully. As a family we are really having a good time right now. It isn't that anything special is really going on. Our days seem completely average and yet we are just having so much fun together. The evenings are some of my favorite times. The moments we spend together as a family making dinner are some of the most memorable. The kiddos are usually scurrying underfoot as Lynley and I attempt to make dinner and discuss our day. There are usually projects going on at the dinner table. Last night, for instance, the project was Play Doh. Sydney and Graham were busily building something (your guess would be as good as mine - they are not particularly artistic) Whatever they were building was extremely complicated as there were bits of Play Doh everywhere. Unfortunately, as we would come to find out later, Graham was feeding the yellow variety to Ainsley under the table. I don't think Play Doh is toxic to a child of 9 months but I also don't remember it being on the food pyramid or in the recommended feeding guidelines. Regardless, it was a typical night around the Dungan household and it was just nice. Yes, even with the Play Doh poisoning incident.
On a previous note Lynley just came down stairs to complain about her horrible night's sleep and the fact that she was up with the kiddo's all night. How ironic that is given the fact that I slept so well. She didn't enjoy the irony. It looks like I will be sleeping in the dog house tonight. Oh well, at least it will be quiet.
On yet a separate note Sydney will be going in for surgery on Thursday. Early in the morning she is scheduled to have her port removed. As a bonus operation we are also going to have the tubes in her ears replaced with longer ones. We are hoping that this will put an end to this long string of ear infections and hospitalizations. Quiet frankly, I am a little disappointed to see her port go. I am not ready for it knowing that she is still in treatment. This will make our trips to Sloan and the myriad of labs and scans that much more difficult as we will have to give her a peripheral IV for each of the procedures. It is a trade off but it will sure be nice to put an end to this seemingly never ending string of fevers and hospitalizations.
Purpose squared!
5:46 AM 03/15/2006
Well, it is the day before Sydney's surgery to remove her port. I am not particularly worried about the procedure but, like anytime you are going under anesthesia, there are risks. Sydney, on the other hand, is incredibly excited to have "sleepy medicine." Wow, we are fighting to cure cancer and we created a "sleepy medicine" junky. She honestly could not me happier and just can't wait for tomorrow. At least we aren't going to be dealing with anxiety and fear. You know, those normal reactions. Ha, we Dungans spit in the face of fear and sanity. I am also happy to report that Dr. Iglesias will be performing her surgery. He is the one that performed her original tumor biopsy and resection. We are very comfortable with Sydney in his capable hands. Oddly enough, he and his family live just around the block.
As much as I would like to talk about Sydney and the family I also need to work some things out in my brain. Lately I have been more consumed with the thought of curing neuroblastoma. Ultimately, how do we speed up the process. How do we get from where we are today (after all, we are just parents) to where we need to be to create real change. First off, I have tried to identify some of the obstacles. The first one is a financial issue. We need more money for research. At one time or another everyone has put up with me on my soap box. I think I have proven my case that childhood cancer needs more research funding and especially neuroblastoma. Unfortunately, the last few years have also brought cuts and budgets are being trimmed. Both the COG and the NANT are receiving less money this year than the year before and both are serving more patients. In short, we have a funding problem. I think we can all agree that we need more dollars to fund research if we want to speed the process up. The second major problem is our patient population - that is - the number of patients with neuroblastoma. Let's look at the US. There are roughly 650 to 700 children diagnosed with neuroblastoma in the US every year. About 60% of those will have high risk disease. The other 40% could spontaneously regress but, none the less, have a hugely different survival rate. This population is good to study and compare but their real value in solving the deadly question of neuroblastoma is in genetic testing. In other words, what is genetically different about these tumors that allows this subset of patients to fair so well in comparison to the high risk group. After all, we are talking about an almost 90 % survival on this subset of patients as opposed to the high risk group whose survival rate is dismal. So, to make a long story short, the subset of low risk patients aren't available for clinical trials for high risk studies. So we take these patients out of our potential study population. We are left with approximately 400 patients. Of these patients approximately 80% will respond to upfront therapy. That leaves us with 320 patients Of these 320 patients approximately half will survive for 5 years. That leaves us with a pool of approximately 80 patients that fail frontline therapy and 160 patients that relapse. Of these 240 patients approximately 20% will not be available for study. That leaves us with roughly 200 patients to study for new investigative agents. Now depending on the type of trials available and eligibility requirements this number can be whittled down even further. With phase 1 trials consuming anywhere from 12 to 24 patients on average and phase 2 trials taking anywhere from 24 to 100 patients or more you can certainly see that we run into a large problem. We only have so many patients. We can either only test a few new agents and keep research moving quickly or we can run a lot of trials but it will take years and years for them to complete. So, to make two long stories short, we have two major obstacles to contend with - dollars and patients. There are more problems but I think there are also potentially more solutions. This will have to wait until another time.
Tomorrow we will be leaving early for surgery and I don't think I will be able to get back to this. My twerpful purpose will be my highest priority. Wish us luck.
1:22 PM 3/16/2005
Although Sydney's surgery ended up starting 3 and a half hours later than it was scheduled, Sydney has come through with flying colors. She is at home resting. Her port is now gone and her new ear tubes are in place. She is sore but recovering.
I am back to my purpose.
5:16 AM 3/17/2005
I would not exactly say that yesterday went off without a hitch. However, the really important thing was that Sydney did extremely well. We arrived at the hospital at 5:45 AM. It was early but we had scheduled the surgery early to accommodate Sydney's ENT who had to be at another surgery facility at 8:00 AM. Sydney was scheduled to go at 7:15 AM. We did all of the usual presurgical stuff. Sydney's vitals were taken. We met with anesthesia and Dr. Iglesias, the surgeon who was to remove her port. Everything was going as planned. The operating room was set up. Sydney was all gowned up. It was 7:15. It was go time! Then it was 7:30.... Then it was 7:45...... Oops, our ENT was not there. By this point they had already taken the next patient into the OR. We had been bumped. At about 8:00 AM I received a phone call from a very apologetic Dr. Lowry. Apparently, he and his staff had their wires crossed and he thought the surgery was scheduled for later. He assured us that he would be there by about 9:30 and he would get this mess straightened out. That was all fine and dandy but both Lynley and I knew that it wasn't going to be easy to recoordinate the surgeon and the anesthesiologist. It was an inconvenience but it really wasn't that bothersome. We new everyone was going out of their way to accommodate Sydney. Given all of the coordination it took to pull off this string of minor surgeries this was really a minor snafu. Finally at about 10:30 AM Sydney was finally taken into the operating room. The procedures actually went very quickly. Sydney was in the recovery room before 11:00 AM with shiny new ear tubes and sans a lump in her chest. Everyone was extremely apologetic. What was funny was that everyone took responsibility for the mishap and wanted to assure us that everything would be okay. Sure it was a longer day in the end but the important thing was that Sydney was okay. I think everyone was expecting us to be really angry. I guess they forget that after everything that we have been through it takes a lot more than that. Life is too short.
We were home by about 12:30. Sydney rested on the couch for less than an hour and then she was up and scavenging through her playroom. We did everything we could according to doctor's orders but Sydney would have nothing to do with them. She wanted to play and, in the end, she spent the rest of the afternoon running around the house and playing with her brother and sister. Her morning activities certainly did not slow her down one bit.
Yep, I've got one tough little purpose.
4:26 AM 3/20/2006
We felt a little cooped up this weekend. It rained and rained and rained this weekend. So bear with me. The kiddos had us surrounded. We are still recovering and still a little stir crazy. We tried to recoup our sanity with a few trips out into the big wide world but even those adventures were met with disaster. Take yesterday morning for example. Lynley and I decided that we had to get out of the house. Even though it was raining cats and dogs we decided to take the kids for our a trip to IHop. It was simple enough of a journey and everyone liked IHop. So, off we went. The meal was great. Sure it was tasty and all but, better than that, Mommy and Daddy did not have to cook it and, even better yet, we did not have to clean it up either. What a spectacular expedition it was. After we had filled our gullets and stuffed our faces we even sat for just a bit to appreciate the fact that we were not at home watching it rain. Unfortunately, all things come to an end and eventually we had to make our way back home. It was still pouring. rain. As Sydney and I stood in line to pay the bill Lynley took Ainsley and Graham out to the car. Since we only had one umbrella she was going to be nice enough to bring the car around and pick us up. Yep, I have a pretty nice wife, don't I? So, Sydney and I made our way through the line and eventually we paid. We made our way to the door but Mom still was not there. We decided to wait in the booth near the front door. We waited and waited. I could see the car from the window and sure enough there was activity. Had it not been pouring rain we probably would have just run out to the car but it was raining so hard and I was worried about getting Sydney soaked or, worse yet, getting the bandage from her surgery wet. So, we waited some more. We waited and waited and waited. Eventually the car made it in our direction. I was not particularly happy about all of the waiting but I could tell from Lynley's face through the windshield that she was even less pleased. When I opened the door I could immediately smell the problem. Here is what transpired.
As Sydney and I were waiting in line to pay our check Lynley was carrying Ainsley in one arm with the umbrella while holding Graham's hand through the parking lot. About midway through the parking lot Lynley could faintly hear Graham screaming "My poopoo, my poopoo" over the pounding rain. She turned and looked down to find Graham's pants down around his ankles. His diaper, too, was open and down around his ankles. Worse yet, it was full of poo. Not only was it full of the stuff but apparently part of it stuck to his legs. Mind you, my wife had a nine month old in one arm and umbrella in her hand, it was pouring rain and her beloved partner, thankfully, was inside waiting in line to pay the check. There was literally nothing she could do but to kind of pull him through the parking lot. Each step brought another smear of poo across his legs. Finally they made it to the car. Lynley lifted Graham into the car and then played a game of telling him to stay still and then to move so that she could get in the car with Ainsley. By the time they all made it into the car everyone had poo on them and the car was getting its fair share as well. Luckily Lynley had some spare wipes and a plastic bag and she went to the gruesome task of cleaning everyone and everything up.
When Sydney and I got to the car the aroma still lingered. I had all kinds of smart ass comments running through my head. For some reason I opted to keep my mouth shut. I was a smart man - a clean and smart man.
Lynley, however, it still scrubbing bits of our purpose off of her.
4:31 AM 3/21/2006
I am happy to report that everyone is accounted for. Sydney's first day back at school went smoothly. Ainsley had a quiet day at home. Graham, thankfully, kept his diaper on. This was all good, especially considering the fact that Mom was under the weather. Lynley has come down with a bug and spent the majority of the evening in bed. I would love to say we both got a great night of rest but the kids were restless last night. I was up with Graham and Ainsley 5 or 6 times and Lynley was up 2 or 3 times. Before you start getting on my case please realize that she shot out of bed before I even awoke. Regardless, it was a crumby night of rest . The good news is that I can't sleep so I have plenty of time to write. I think I will get back to one of my favorite subjects - neuroblastoma research.
I left off last weak discussing two major problems with researching neuroblastoma. I think we can all agree that they could use more money to hasten a cure but the other problem is that there are simply not enough kids in the position to test many of the new investigational agents. At best we can only test about 6 or 7 new agents at a time and even these trials will take years to compete. So that really begs the question, which agents do we test. You may remember that there are literally hundreds of agents sitting on the shelves that have shown promise at killing neuroblastoma. They aren't taken to the next level either due to the lack of funding or to lack of suitable test subjects (yes, our kids). Basically the agents we are testing are a direct result of the interest and skill set of a particular researcher and, ultimately, what he could get funded. Unfortunately, this leads to bias. The best drugs may in fact sit on the shelf because there aren't any researchers that are particularly interested in it, capable of testing it, or that can't get funding to work on it. Summing up, we have another less tangible problem with research, it is bias. The research efforts are not necessarily chosen because the are in fact the most promising but because it is something that is in a particular researchers interest or expertise.
Bias can be a two pronged problem - availability of equipment, drug, and lab space can also cause problems. A cure may also be sitting on a shelf because a researcher does not have the equipment, drug, or space to test a particular theory at their institution. In fact, they may have the equipment or the drug available to study another research question and, thus, that is the reason a particular piece of research is committed.
Another issue is the viability of a solution. There may in fact be a potential cure looming on the horizon but no one is investigating it because no one can figure out how to deliver the treatment to the masses either due to logistics or cost. A perfect example of this is MIBG therapy. Although it is not a silver bullet it is effective at killing neuroblastoma about 40% of the time (and this includes chemo resistant cell lines) and could be a hugely valuable part of the neuroblastoma treatment regimen. Remember, it is 40% effective against the worst of the disease - disease where all other treatments have failed. It works and is probably one of the most significant anti-neuroblastoma treatment discoveries in the last 5 years. The problem is that there are only 4 or 5 institutions that can provide the treatment in the US. It requires a huge capital investment and has stringent regulatory oversight associated with it. Even though it is a promising agent we are not seeing it in a phase three trial because it is ineffective but because no on can figure out the logistics of how to deliver it to patients around the United States. Think about it. They would have to shuffle patients around the United States. There would by travel considerations, housing considerations, cost considerations. They would be splitting up families in the midst of treatment. It would be an incredible undertaking. So, yes, in short logistical considerations are yet another hurdle to overcome.
Off of the top of my head those are the five biggest hurdles to neuroblastoma research and hastening a cure - money, patient population, researcher bias, availability, and logistics. I hope tomorrow I can start to get into the solution.
Until then I have many purpii today.
5:19 AM 3/22/2006
Good morning! It seems as though Lynley may be on the mend. Yesterday Lynley went to work and she spent the entire day running at 100 miles per hour. She did not even slow down when she got home. My sense is that if she doesn't take care of herself she is going to end up even worse. Of course, I am just a man. What would I know? Ainsley, too, seems to be a bit under the weather. She is having difficulty staying asleep at night and when she wakes up in the morning she looks like a truck ran over her. She looks that way most of the day but, strangely enough, she spends the day acting just fine. Sydney and Graham appear to be doing extremely well. They are both up to their usual chaos and keeping Lynley and I wondering what on earth might come next. I really don't want to go into details because everybody will begin to think that I really enjoy the morbidly grotesque. So lets just put it this way. Sydney is really good at coming up with activities for Graham. She is extremely helpful. For instance, when I asked them to wash up for dinner last night, Sydney helped Graham into the bathroom and then closed the door behind them. After about five minutes Sydney came running out in front of Graham to let me know that he washed himself -- in the toilet. Of course, she waited until after he had been doing it for a good five minutes before she told us. You see, this is what I am dealing with. I am surrounded by sickies - some physical, some mental. But hey, it is my life and I guess I wouldn't change it for a thing.
After all, they are my purpii - my strange, sick, twisted purpii.
4:52 AM 3/23/2006
I am an idiot! You would think that with all of this "medical exposure" I would be able to spot an ear infection from a mile away. You might think I would be able to tell the difference between a sick child and a healthy one. Regardless, in both scenarios you would be just as wrong as I am. As it turns out, yesterday, after I had gone to work, I received the phone call, "Martha (our nanny) just called. Graham is throwing up. I have scheduled an appointment for he and Ainsley with Dr. Debbie at 2:15." Now, I was expecting the call about Ainsley, but Graham. No way. It was just a few hours before that I had been writing in my diary about how healthy he was. My little man child? My little Dudely? It just didn't make sense.
Later in the day I took the duo to see Dr. Debbie and, sure enough, both have ear and eye infections. So there you have it. It just goes to show you. If you wash up in a toilet, you will get sick - even if you don't look like it.
Okay, now that I am quite finished reveling in my stupidity I am anxious to get back to curing neuroblastoma.
First off, don't get me wrong. I am not arrogant enough to think that I came up with a way to cure neuroblastoma. I don't know the answer to that question. What I do know is that there are definitely problems with the process and that there are things that we can do to address them. Some of the issues were self evident but many are a result of talking to many of the researchers, two of my favorites to talk to are Dr. Patrick Reynolds from CHLA and Dr. Nai Kong Cheung from Sloan Kettering.
Dr. Reynolds amazes me every time I meet the man. He has more energy than anyone that I have ever seen in my life. I honestly don't think that he sleeps. When he isn't trying to cure cancer he is playing guitar and singing in his eclectic band made up of a few other pediatric oncologists. For many years he even spent his nights talking with the parents on the NBlast listserv dispensing caring advice and guidance to the parents of children with neuroblastoma. Right now, his other hobby is creating videos (yes he is director and producer) for the families to help explain many of the new treatments. He has been a part of many of the new treatments that have come out in the last 25 or so years. He is the one that discovered that Accutane helped in the battle against minimal residual disease. He works tirelessly and is incredibly passionate about his work. That is one of my favorite things about talking with him. It only takes a sentence or two to rile his feathers and then he is all over you. He literally spews his beliefs in killing neuroblastoma. He is explosive and opinionated and angry at the man for keeping him down (in this case, our most recent conversation, because UCLA would not give him the lab space he needed to perform the research he wanted and could afford to do.) It is fun to watch someone with such conviction and belief and it is easy to get swept up in their enthusiasm. Being around him is like a shot of adrenalin. I would be inspired by him even if I had no connection with neuroblastoma.
Dr. Cheung is almost the exact opposite in demeanor. He seems quiet and soft spoken. He is polite and his words are well chosen. What amazes me about him is his quiet conviction. Curing neuroblastoma is his life's work and that is the gold standard by which he lives his life. He is primarily a researcher but spends a surprising amount of time meeting with patients. Before I went to New York many said that Sloan was very research oriented, that we would just be a number, and that they only cared about the research. Boy were they wrong and Dr. Cheung is a perfect example of why. Here is a guy that could just sit in the lab and do science and crunch numbers every day but he chooses to make the trek across the street at least once a week to see the patients. He wants to check on them. He wants to make sure that the application of the science has a good quality of life and is always interested in improving the process. I feel loved in his presence. I know that sounds strange but it is an important distinction. How many times have you gone to the doctor and felt loved, felt truly cared for. How many times have you felt like you were being cared for by your dad. To Dr. Cheung this is personal and sure he might put on the numbers hat and crunch research but at the end of the day it is really about each one of his children - our children. I have literally spent hours talking to him about the problems with research and he will be the source of much of what I say.
We will get there. Hope. There are more that share our purpose.
4:53 AM 3/24/2006
Good morning! Bear with me, I am tired. I really don't have anyone to blame but myself. The kids slept perfectly. It is the first time in as long as I can remember that they have slept straight through the night. My problem is that I stayed up to nearly midnight. Four and a half hours of sleep just isn't enough but I was too excited to sleep any longer. I am working on some new projects for the CNCF and my mind is racing. I am inspired. Basically, I am rewriting the website (yes, again) to take advantage of all of the new technologies that we are going to be adding to it over the next month or so. When finished I think I will truly be like nothing else out there for parents and families touched by cancer. We have spent weeks talking about it and designing it and now it is go time and we finally have the pieces of the puzzle to start putting it together. Unfortunately, my excitement will come at a price and I am sure I will be craving a nap around noon.
The kiddos seem to be doing well. Graham and Ainsley still don't seem sick and are definitely no worse for the wear. We haven't made any plans for the weekend as of yet but I am sure we will put together something fun (and hopefully relaxing).
Here is hoping for a nice, quiet weekend of purpose.
5:18 AM 3/27/2006
Well, I would not have called it a quiet weekend of purpose. How naive of me. I do have three kids after all. The good news is that although it was not quiet it was a great weekend nonetheless. It really was just a cozy family weekend. We did not do anything spectacular. We were just all together and it was nice. The womenfolk had me doing "honey dos" all weekend but I was lucky enough to also have junior helpers. Just about everything I did this weekend required some kind of help. And whether it did or not I always had some handy.
Sydney is now about ten days out of her surgery to remove her port. I think it is probably not fair not to mention it. After all, there is probably a parent out there who wants to know what it is like to have a child's port taken out. Well, the reason I have not mention it is because I haven't needed to. Her recovery has been easy to forget about. The only things she has complained about are (a) that she can't play in the bath (she can't get the spot wet for roughly two weeks) and (b) that it hurts when Graham pokes it. The good news is that if you have a child that doesn't like to take baths and he/she doesn't have a mean little brother you should be in great shape. Seriously, Sydney has never complained about it.
Let's see. Graham. Hmmmm. I really don't have a lot to say about Graham this morning. Sorry Dudely. He is as cute and obstinate as ever. We took a wonderful family outing to target this weekend and it was my job to train the little heathens to walk quietly and orderly beside the cart as we shopped. Usually they are fine as long as Sydney is walking, Graham is strapped into a seat in one cart, and Ainsley is strapped into another. The problem with this schema is it makes it nearly impossible for one parent to take the entire gaggle of junior Dungans to the grocery store. So, I took the challenge upon myself and spent a little over an hour in twerp training. Sydney was pretty complacent. She already had this gig down but Graham, oh my God, you would think he was going to die. He spent the first half of the time screaming, crying, or telling me "NO!". The looks on the faces of the passers by were just hilarious. I think many of them knew what I was working on but the others were just mesmerized by my little heathen. By the second half of the hour I had them all in perfect coordination. Sydney had her hand on the right side of the cart and Graham had his hand on the left. I was so proud of my obvious domination. Everyone was looking at my wonderfully behaved children and I, their master. I felt like the ring leader at the circus and everyone was in awe. That was of course until the last two minutes when Graham had an implosion and had to be swiftly removed from the store to have a tantrum. But, right up until then, it was awesome. I had power.
Ainsley, on the other hand, could really care less about my power. She is just looking for a little sanity in her life. She is by far the most attitudinal of our children and if you don't react appropriately in a timely fashion she will let you know about it. It isn't that she cries but she will give you an earful of heartfelt gobbledygook if you don't pay attention. She is animated and sure of herself. I had better watch out for this one.
Well I had better be off. A new week of purpose has begun.
5:27 AM 3/28/2005
Well, I think I have an opportunity to get back to my chat about research. Last I left it I was talking about two of my favorite researchers, Reynolds and Cheung. I think I did a pretty good job of describing their similar hatred for the disease and their completely disparate personalities. It is amazing how completely different they are and yet they are two of my favorites. To take that one step further I would also say that there approaches to solving the problem are diametrically opposed. Here is the point were I should say, "This is my opinion." (and assume I had an attorney write a three page disclaimer)
Dr. Reynolds is an active participant in the big research engine that is called the COG (Children's Oncology Group). Dr. Cheung is as well but I would not describe he or his facility as active participants. The COG is all about curing childhood cancer. They are research oriented. They fund huge, medically relevant trials asking important research questions. Their information is reviewed by independent third parties. I guess what I am getting at is that the COG is responsible for some very good science and they are an authority on medically reviewed material. To their credit they are also probably the reason that so many children with cancer are participants in clinical trials. They are especially valuable in a disease such as ours where it is just rare enough that it is not a specialty at many treating institutions. Believe it or not, their are many oncologists throughout this country, in this day and age, that just throw up there hands when it comes to neuroblastoma. They simply don't know enough about the disease and treat it like many of the others - which could prove fatal. Truth be known, when it comes to neuroblastoma, by the end of treatment many parents know more about the disease and the treatment options than their oncologists. Since so many institutions are members of the COG the oncologists have access and guidance when it come to neuroblastoma and they end up making good decisions for the children in their care simply by following the protocols. The other major benefit of the COG is its size. Their are over 200 participating institutions and with the small numbers of children with neuroblastoma at each institution this is the only real way any meaningful phase III research can be done. Remember it takes several hundred (350+) patients to complete a phase III trial. It is this group and their participation that benefits so many kids around the world and it is Patrick Reynolds's (among others) that leads the charge for neuroblastoma within this group.
So, why wouldn't I say, hey lets just fund more research through the COG. Well, aside from the fact that dollars donated to the COG (through CureSearch or any other means) don't necessarily go to neuroblastoma and they have a history of funding neuroblastoma at a disproportionately small rate, there is another side to the coin. After all, it is this issue (among others) that led to the formation of NANT. Tomorrow as I discuss the perspective and work that is led by doctor Cheung I think we will get a better feeling of why it is not the only answer.
My purpose is invigorated.
6:00 AM 3/29/2006
Wow, I overslept and I can't remember a time that I have slept better. I literally slept through the entire night without waking up. I actually attained REM sleep. I feel down right foxy. It is a good thing too. Today will be a busy day. Sydney has two appointments. The first is at 9:00 AM this morning. We will be meeting with Sydney's ENT to have a look at her ears to make sure they are healing properly. We aren't really expecting to hear anything negative. We just want to hear that they are in her ears properly and that they are working. That would be a nice change. Our second doctor's appointment will be later this afternoon. It is just a follow up appointment with her surgeon. Hopefully, we will get the okydoky to bath her. We have sponge bathed her but it just doesn't seem to cut it with my stinky little curmudgeons.
I am not going to bore you with the normalcy of yesterday. It was a completely normal, average day. I still appreciate each and every one that we are blessed enough to have. The highlight (or lowlight) was that Sydney got in trouble with her teacher for not listening. We wanted to nip that in the bud so Lynley and I summoned all of our parental powers to develop a punishment suitable. In the end we asked her to sit in a chair and think about what she should do for Miss Nicole. After several tears she actually really thought about it and came up with a workable solution. She would (a) apologize to Miss Nicole, (b) not do it again, and (c) write her name on a piece of paper ten times and give it to her as a present. This is actually a pretty great punishment. Sydney has struggled with writing her name correctly and being able to reproduce it. For some reason she always forgets the "e" in her name. Anyway, Sydney spent a good 45 minutes working on her name. There were tears and frustration but she eventually made it through. She got to the point that she ccould write her name over and over again without mistake. She was extremely proud and I am sure Miss Nicole will be too. The good news is that through this experience she learned to write her name. The bad news is that it was such a positive experience I am sure she will misbehave again just to feel the high of success.
It seems Sydney may have found a purpose.
4:14 AM 3/30/2006
You know, every time I go patting myself on the back, it always comes back to bite me. Yesterday was no exception. Let's see, just as I had finished telling my beautiful story of what a wonderful learning experience my daughter had, a new day was beginning. By the time I had made it upstairs, Sydney had already been in time out and the little twerps were already to mount another attack at their mother. Luckily I, SuperDad (mind you) was there to save the day and put a stop to the ruckus. Of course, my almighty powers lasted about twenty seconds (Lynley would say that was typical) and they were back running amuck.
Sydney's doctors' appointments went well. Her new tubes are sitting perfectly in her ears. She is certified to go on merrily without ear infections for at least another month. After her first appointment I ran her to school where she presented Miss Nicole with a proper apology and a sheet of paper with her name scribbled perfectly on it ten times. I would not hear anymore until she got home at about 4:30 PM with her mother after another successful doctor's appointment with Dr. Iglesia. He, by the way, also issued her the standard seal of approval. Her scar is slightly worse than anticipated but it is probably due to the scar tissue from the previous incision. Of course, the wound is still fresh and I imagine it will fade over time. Another war wound for a little girl to hide. I am sure that will be an issue for a later day. For now, I am comforted that she is not sensitive about it yet. Her teen age years may be another story. I remember how sensitive I was about my appearance at that age. I will remember not to forget. Still, it will always be a badge of courage to me.
It was their arrival at home when I finally got the story about Sydney's day. Simply put, she was awful, awfull-er than the day before. All of our superior parenting was for not. Sydney was disagreeable and refused on several occasions to listen to her teacher. She lost her blanket and was even sent to the corner. She was a bad little girl at school. It was somewhat embarrassing to hear but more than that I was just disappointed. I really had thought we had made a breakthrough. So, to make a long story short, yesterday was like boot camp for Sydney. Her life just became harder. As a punishment I took the other kids over to see DeeDee. First, this kept Sydney from playing with her little brother which is her favorite after school activity. Secondly, we kept her from going over to DeeDee's which is another of her favorite activities. This also gave Lynley the opportunity for some focus time. Sydney was sat at the table and she spent much of the time doing school exercises. I don't like using school exercises as a punishment. They should be fun. The fact of the matter, however, is that it is not one of Sydney's favorite things to do and it was her repayment to learning that she obviously misspent during the day.
Her school work last night was a complete disaster. She went from spelling her name correctly every time to missing it nearly every time. She even finished off the night by writing her name in a complete mirror image. Scary. I don't even want to get into the implications of that. Mind you I am somewhat concerned and I will certainly follow up with her teacher this morning.
The good news was as complete of a disaster last night was it must mean the today will be better. After all, since our perfect parenting with complete success the night before ended in total disarray, it surely must mean that last nights creepy disaster must end up with perfect behavior today.
My purpose just got more complicated.
5:32 AM 3/31/2006
If Sydney had a good day yesterday, do you think I would risk mentioning it? If she was perfect in everyway, if she was a good listener, if she took a good nap, and if she did everything asked of her with a smile on her face do you think I would say something? Do you think I would tell you that it was all due to superior parenting? Do you think I would tell you that it was because we mustered all of our maternal and paternal mojo to put an end to all of the bad behavior?
Well, of course I would. It was exactly what happened and I am happy to take all of the credit. You see, it is exactly how I explained it to all of her teachers. Sydney was bad at school on Tuesday and, as I explained them, we took firm steps to put a halt to the repugnant behavior. We factored in three important ingredients. Sydney took ownership of and responsibility for her bad behavior. She apologized for it. Finally, she made remunerations for her past discretions. I know it sounds good and I also know it did not work. What can I say, I was naive. This was only my first kiddo of three.
The next night, seeing that our carefully crafted strategy at child reform did not work, Lynley and I threw everything we had into it. There was no carefully crafted message. It was just wild, off the cuff parenting. The fur was flying. Teeth were bare. We left no prisoners and we were sure we must have fixed her this time. After all, if this did not do it, there was nothing more that could be done. We had given it our all. We had mustered ALL of our parenting powers. If this did not fix her she was obviously not fixable. She must just be pure evil and no amount of parenting could fix her. So as I left it with her teachers - good luck!
Luckily she isn't pure evil, just pure twerp.
God, I love my purpose.
4:08 AM 4/3/2006
We had a really busy weekend. On Saturday, Lynley took Graham and Sydney to see Disney on Ice and on Sunday we made a trip to the Fort Worth Zoo. The kids were really pretty good and it all culminated in a nice relaxing cookout last night. There are exactly three weeks before our trip back to New York and we are taking advantage of every one of them. Over the weekend I booked the airfare. The tickets were a little more than $100.00 per ticket more expensive than they usually were and on top of that we have to leave at roughly 6:40 AM.
Last week, I talked about Dr. Reynolds and the COG. I pointed out that the COG, a huge research engine within the neuroblastoma world, was responsible for all of the large phase III trials in North America, and that it was their guidance that protected many children for poor judgment when it came to such a rare disease. With all of that being said ,Dr. Cheung and Memorial Sloan Kettering have a completely different philosophy and it might just be the perspective that gets us to a cure that much more quickly. One of the reasons is that Dr. Cheung has accepted the numbers problem and has reengineered his research around it. I don't think that it comes as much of a surprise that they will never do a phase III trial. Simply put, it takes too much time. Even in the huge research engine of the COG it still takes approximately five years to complete a phase III trial - and that is just to complete it. That does not even include the time it takes to wait for the overall results and to crunch the numbers. It can takes years after that before any information can be made available. The problem is that by the time you answer your research question it may not even be relevant. A perfect example of this is the upcoming phase III COG trial that will test whether tandem transplants are better than a single transplant. Before this even begins Sloan has been testing the theory that a transplant may not even be necessary. By the time the COG even closes their trial it is likely that we will have already answered the question of whether the transplant is necessary at all. Will it be done in a phase III trial? No. The point is that Sloan can move much more quickly and instead of trying to prove their science in a large trial they have proven it smaller groups. At some point in most families journey they have to make the decision of whether to pursue antibody treatment. Most choose not to and it is this very question that frustrates me the most. There is no Phase III trial that says it is better so many choose not to risk it. The problem is that there will never be a phase III at Sloan Kettering for neuroblastoma but they do know it works. Fact: before kids start antibodies they have disease. Fact: they take antibodies. Fact: they don't have disease anymore. It is that simple and yet more families aren't doing it. Is it the silver bullet? No. Does it work? Yes! Does your child have a better chance of overall survival? Yes! But still, the question has never been asked by a phase III trial? The reasoning appears to be because they want to move more quickly. They can ask 25 phase Is and probably 5 phase IIs in the same time. They can prove that it works, why waste the time and lives? Instead, they choose to perfect their methods, effectiveness, and delivery and they can answer more research questions in a shorter period of time. Is it bad science? The answer to that depends on whom you ask but nearly everyone that knows neuroblastoma, oncologists included, would probably send there own kids to Sloan for antibodies. They work. The fact is that Sloan sees over 125 new patients per year - more than the top 5 institutions combined. It isn't because they don't work.
As you can see there are two totally different philosophies when it comes to researching neuroblastoma. In my lay opinion they are both right but when lives are on the line you know where I want my research done. Regardless, we all have to accept the neuroblastoma reality and take advantage of what we do have. There needs to be more cooperation, funding, and goal oriented research. Next time, I hope to get to what needs to change.
After all, it's my purpose.
5:19 AM 4/4/2006
Good morning! Ours is somewhat suspect. Yesterday evening Graham sported a temp of 102.4. We tried to control it with Tylenol but we were never able to really get it to come down. At bedtime we gave him some Advil and although his activity improved his temperature never really settled. Lynley was having flashbacks. Although we know the chance of Graham getting neuroblastoma is very slight (.2%) the fact that he is two and having unexplained fevers makes us both a little queasy. Lynley called Dr. Debbie who assured her it was not neuroblastoma. She said that she would see us in the morning. Graham really seems to be in pretty good shape. Other than some brief moments of lethargy and lack of appetite the boy appeared perfectly normal. We had been actively playing all afternoon and there aren't any outward signs of sickness. He seem to sleep somewhat comfortably throughout the night. Lynley checked on him a few times and there was little change. The fact of the matter is that he has a high temp - a seemingly normal thing to someone who has never stepped into the world of neuroblastoma but a potentially horrible and ominous sign to someone that has. We are hoping to find out he has a nice raging ear infection or something even more benign.
I want to clear up a statement in my diary from yesterday because I don't think it is fair to other parents . When it comes to caring for kids I want to make sure I am dispensing fact instead of opinion. I was really surprised that no one wrote to challenge me on it. It would have been a good discussion. Regardless, I do want to clarify one statement. I got really excited and all full of words. I started spewing opinions like facts. I stated "Does it work? Yes! Does your child have a better chance of overall survival? Yes!" and that isn't an entirely fair statement. We do know it works. There is no doubt, even in the medical research, that antibodies kill neuroblastoma cells in these kids. We also know that they are able to kill chemo resistant forms of neuroblastoma. So, if you want to give your child a relatively benign treatment that will kill neuroblastoma, antibodies are a good option. We also know that it some kiddos antibodies appear to create some type of long term protection. After antibody therapy (specifically 3f8) some kids develop another long living antibody(AB3) which also appears to kill neuroblastoma. Another thing we know is that antibodies don't kill all neuroblastoma cells. There are some out there that seem to skate by antibodies - either the neuroblastoma is growing too quickly or the antibodies don't attach to it and kill it (lack of GD2?). As I said, it isn't a silver bullet but it can work and it does in the majority of kids. Now, the second part of my statement was about overall survival. The fact of the matter is that there aren't any studies that I know of that specifically address this. There is a phase II that indicates a 70% rate of overall survival but it is only three years out and we just don't know what the numbers will tell us in another couple of years. It could turn out to be that incredibly effective or it could just prolong life. The point is that we know it is doing something. In this sense, parents must be aware. Antibodies are a tough decision. Everyone fears the pain associated with them. Hey, they aren't fun but the quality of life is good and the late term effects appear to be very benign - especially when compared to chemo. It is my opinion that antibodies should be a staple for every child with neuroblastoma. In my mind, it should be part of standard therapy and I welcome any arguments otherwise.
Well, I have to run. Graham is still running a fever and for the time being he is my focus. I've got purpose all over the place today.
10:34 PM 4/4/2006
Okay, it is 10:30 PM and I know that I won't be up at 4:00 AM to write this. Graham is still running a fever. The Dudester went to see Dr. Debbie today and other than the fact that he had a high fever nothing else was confirmed - not what we were looking for. Dr. Debbie entered the room by saying "I have got bad news. Graham doesn't have the flu and he doesn't have strep throat." Lynley said " I bet we are about the only family that you walk into the examination room and say 'Hey, I have got bad news you don't have the flu or strep.'" Debbie said "Yeah, I guess history has changed all of us." I guess that is really true of all of us that have entered this world. You just don't know how bad it can be until you get there. And oddly enough, we are still considered the lucky ones. Don't think for a day that I don't appreciate that.
So, Graham is sick. He has high unexplained fevers - just like Sydney and it has us all a little bit rattled. The good news is that the boy's throat appears red. Sydney never had that. That is a piece (and peace) of reality we can all grab a hold of. Regardless, we are going to wait Graham's fever out. The common belief is that we have something viral going on - at least everyone is hoping something viral is going on. We all know reality. We know the chances are slim. But we all remember. Remembering is a double edged sword.
For better or worse, my purpose was born from this memory.
5:21 AM 4/6/2006
Graham's fever has finally came down. His lethargy has seeped away and been replaced by restlessness and an inability to cope. He spent much of yesterday afternoon crying. He would play with his sisters but just about everything set him off and there was very little that would console him. We tried to keep him relaxed and involve him in quiet activities but his sisters, the instigators, soon had him all riled up which was always followed with tears. He could be on the road to recovery but he is not there yet. He still has a pasty look and his eyes look somewhat hollow. I am hoping for a vast day of improvement.
Sydney and Ainsley seem to be doing pretty well. Whatever this bug is they seem to have avoided it thus far, however, I know we are not out of the woods yet. Sydney is doing much better in school and we have not had any further incidents of not listening to her teachers. In fact, she has been absolutely stellar at school. She has been more of a challenge at home. Her listening skills certainly are not what they used to be and these can not be blamed on her ears. I just don't understand 4 year olds. They don't seem to have any method to their madness. They are old enough to be deceiving but not old enough to do it very well. They already seem to think that the are adult human beings but they still routinely make the worst choices. Mostly, the have great memories but they can't seem to remember one minute to the next that you told them that they couldn't not have candy for breakfast. In reality they are deceitful, grubby, little, lying, tyrant worms. Oh sure, they are cute on the outside. That's how they suck you in. But, under the surface, they are sneaky and I am pretty sure that if they were any bigger they would rule the world. I know that they believe it anyway.
This is the time when Lynley and I have to stand united.
Is it just our house or are kids really taking over the world?
I seem to be surrounded by purpii.
4:56 AM 4/7/2006
Graham continues to be under the weather. Nothing much has really changed over the last day. In fact, I could write the same exact things as I wrote yesterday and it would be just as true. It was as if we just relived the same day. Graham's fever has subsided but the little dude still looks worn. He has rings under his eyes and he just seems tired. He still continues to do everything he would in a normal day but it is obvious that he is not at his best. I would really love to see the glimmer back in his eye. Hopefully a nice relaxing weekend will recharge his batteries and help him over the last hump to wellness.
I think Sydney wants Graham back most of all. As much as she loves to torment the Dudester, he is her constant companion around the house. Currently he can't quite keep up and gets frustrated trying to do so. Activities generally leave both in tears. He, because he is tired and she, well, because she can and everyone else seems to be doing it. Graham really seems to have quite an effect on the entire household. The volume control at our house has been broken off and someone lost all of the sanity.
This weekend ought to be really nice. Everyone could use the break. I have a mountain of "honey dos" and a 20 yard dumpster at my disposal. Lynley has scheduled me in the coal mines all weekend.. I will be responsible for cleaning out the shed, the attics, and the storage room. Yippee.
Well, I had best be off. I am not particularly clever this morning. I think we are all tired and we just need some time to recover. This weekend will hopefully be opportunity for us all to recharge our life batteries.
Our purpii need refueling.
6:27 AM 4/10/2006
Okay, so this weekend wasn't relaxing. My mean wife worked me to the bone. Of course, she told me it was good for me and that I should appreciate it. So, I guess I do. Graham seems to be on the mend and the rest of the clan seems to have had a great weekend together. I even got to revisit one of the great unknown surprise benefits that comes from having stepped into the world of childhood cancer. This one comes in the form of a moment. It is just a second in time but it is the difference beauty and heartbreak. It is a talent, an appreciation for life, that I might not have ever learned had I not been forced to figure out what was important in my life.
You see, yesterday Sydney was in a complete twerp funk by the time naptime rolled around. Lynley was busy cleaning the house, all of the kids were down, and I was catching up on a mountain of work. Sydney was banging around upstairs. We had already been upstairs twice to tell her to cool it. It was nap time and I could here that her little twit scurrying around where she was not supposed to be. I was starting to get angry. I wasn't mad because she was disturbing me. I was mad because she wasn't listening, she wasn't following my command (go figure) and she was plenty loud enough to raise the other Dunganlets who were sleeping nearby. With every moment of her misbehavior I was getting more livid. Why wouldn't she just listen and go to sleep? Finally, I huffed and puffed my way upstairs. I was ready to play "mean" daddy and, honestly, there wasn't going to be a need to do much acting.
When I opened the door I found her scrambling to get on her bed. It was clear that she wasn't doing what she was supposed to do. The little twerp even had the gall to have a smile on her face. And, what the hell, there was a good eighth of an inch of water covering the floor from wall to wall.
Instead of lashing out, I simply took a breath. This was my moment.
I have learned how precious moments are. That was a gift I got from cancer and something that still stays with me today. No matter how mad I get I now have the gift to just wait and to process the information that is before me. It isn't a conscious decision. It just happens. Somehow my mind knows that we want good things to be lifelong memories. We want the bad moments to be learned from but certainly not the memories that define our lives. I could have screamed. I could have yelled and scolded. I didn't. I just stood in silence.
A moment later Sydney chimed in. She said "Surprise Daddy, I cleaned the floor for you and Momma." I said, "Thank you honey but why?" She looked straight at me and said, "Because you and Mommy were working so hard. I wanted to help." I thanked her again and told her how proud I was of her. I even brought Mommy upstairs to show her what a great job Sydney had done.
That could have been a really ugly moment. I could have lashed out at Sydney and just absolutely broken her heart. Instead it turned out to be a lifetime memory and something we will both learn from. It was just a moment.
That is the beauty of a purpose. It helps you define what moments are truly important.
5:09 AM 4/11/2005
My last entry was actually written on Sunday afternoon. I wrote it almost as soon as it happened. I didn't want time to cloud my memory of the event. The reason I tell you this is that Sunday night did not go well. Sydney woke up at about 10:30 throwing up and she did it solidly (every 30 minutes) until almost 3:00 AM. After that she finally fell asleep and rested comfortably for the remainder of the night. I on the other hand did not. As it turns out my daughter is also a bed hog and I spent the remainder of time fighting for my 5 inches of mattress real estate. Lynley and I woke at about 6:00 AM, more tired than the day before. Sydney woke up a little before 9:00 AM. She came downstairs dressed to the 9s. She had washed her face and she was dressed in a white shirt and cute pink dress with a poodle on it. She was such the little lady. Although she remembered the activity from the night before she seemed no worse for wear. She ended up going to school and we never saw any more signs of sickness. The night before we had gone to dinner at a Mexican food restaurant and Lynley thinks that Sydney's tortilla soup may have been bad.
Last night was much better although trying to get the little twerps to bed is becoming more and more of a challenge. The little Dudester no longer wants to sleep in his crib and we keep finding him in his sister's bed. It is really quite cute. He knows he is not supposed to sleep in her bed but almost as quickly as we close the door he is shinnying up and over the bedrails. He is quite the escape artist. Usually we find him sitting on the corner of Sydney's bed with his pacifier and his blanky in hand, just waiting to be caught. It is impossible to punish the boy. He just looks so darn cute sitting their with those big puppy dog eyes and the upturned crease around his mouth from the smile obscured by his pacifier. We tell him not to do it anymore but us soon as we leave the room we can hear the little twerp's crib rails start to rattle - another sure sign he is making his way to sissy's bed. If you wait long enough you will find him cuddled up beside his sister fast asleep. If you wait even longer you will hear the thump in the middle of the night from when he falls off the bed.
I think it is time to do away with the crib but I may just wait a few days. This is far too cute.
My Purpii sure are sneaky, sneaky cute.
5:00 AM 4/12/2005
Okay, so I was sitting in my chair just working away in my office. It was midmorning and I was cranking out the work. Then, I got the call. I couldn't make out all of the information but it was something about Graham, bathroom, and broken. I needed to get home now. I hopped in the car and raced home. My heart was pounding. It only took a few minutes and a few broken road rules for me to get there . I ran up to our front door and flung it open. There I found Martha almost in tears standing next to the bathroom door downstairs. I could hear the water running full blast behind the door and all of a sudden reality set in. My son, my man child, he who was created in my image, and the one designated to carry on my name had locked himself into the bathroom. You see, we live in a an older house and our bathroom doors have metal latches that are used as locks. Junior genius had locked himself in and there was literally nothing that we could do to get him out. I put my face down on the floor and looked under the door. There I found him, two of the cutest eyes staring right back at me along with a gentle little smile. "Hi Daddy!", he said in one of those upbeat voices as if absolutely nothing was amuck. I couldn't help but laugh. "Hi Dudely, What ya doin?" I said. "Playin water. Juice?" he quipped back. It was his way of telling me he was playing in the water and he wanted some juice. I told him to wait just a minute and that I would be right back.
On my way back to the work room to look for some tools I gave Lynley a call to catch her up on what was going on. She was laughing as hard as I was. Martha was still shell shocked. I think she was afraid we were going to be angry. Later I would explain to her that when she wasn't there we were and we knew exactly how sneaky our little twerps were. It was an accident and likely completely out of her control. Regardless, Lynley was on her way home and I scuffled around the work room until I found another latch. This was my first mistake. I somehow assumed my son, the two year old that just locked himself into the bathroom, was somehow going to be able to get himself out. What can I say? I was swept up in the moment. I wanted to belief in my little MacGyver. When I got to the door I asked Graham to open the door. He was fumbling for the handle but he was no where near he latch. I placed the extra latch that I had found in the work room under the door. I manipulated it, opening and closing it with my fingers to show Graham what to do.
Me: "Graham, do you see the latch that Daddy has?"
Graham: "Esth. (This is as close as Graham comes to saying Yes, apparently there is a silent 'Y' and I hidden 'th' sound)"
Me: "Can you see Daddy open and close it?"
Graham: "Esth."
Me: "See, open-close, open-close?"
Graham: "Esth."
Me: "Do you see a latch that looks like this on the door?"
Graham: "Esth."
Me: "Can you open the latch on the door like Daddy is opening the one in his hands?"
Graham: "Esth."
Me: "Okay, Graham, open the door!"
Graham: "Daddy?"
Me: "Yes."
Graham: "Juice?"
Me: "Yes, Graham, but you have to open the door first. Can you open the door for Daddy?"
Graham: "Esth."
Nothing happens. He fiddles with the door handle but not the latch. This isn't working. I decided to run out the front door and look through the bathroom window. As soon as I get there I found him standing on the toilet. He flings open the curtain and looks straight at me. I am greeted with a huge smile.
Graham: "Hi Daddy!"
Me: "Hi G-Man."
Graham: "Juice?"
Me: "Graham, we have to open the door first."
Graham: "Okay."
I showed him the latch again and then pointed to the door.
Me: "You see the latch on the door?"
Graham: "Esth."
Me: "Can you go open it for Daddy?"
Graham: "Esth."
But he just stands there. He doesn't move an inch He just smiles right back at me. A moment later.
Graham: "Juice?"
I couldn't help but laugh. I fumbled around for the next 10 minutes or so. I would make my way inside and outside of the house. I would show him the latch and explain how to open it. I would ask him if he understood. He would say "esth" and then I would ask him to open the latch on the door and he would just sit there and stare at me. Eventually he would always ask for juice. Yes, this is my brain child (both meanings).
Lynley arrived home. She couldn't keep a straight face. She looked under the door and, sure enough, there was Grahamster "Hi Mommy!!" he said in his happiest voice. "Hi Graham" she replied fighting back tears of laughter. "Juice?" he asked.
Lynley just laughed but it was clear we weren't getting anywhere fast. Lynley told me to go get my drill. She convinced him to go over and stand on the toilet seat while I drilled through the latch on the door. Within a minute he had discovered freedom. Lynley opened the door and there was Graham, just as happy as could be. We turned off the water and took him to make him some juice.
There are now two 1 inch holes in our bathroom door. I laughed myself all the way back to the office.
Stranger than fiction?
No just another day of purpose at the Dungan household.
4:19 AM 4/13/2006
Nothing out of the ordinary to report today. It was all the usually stuff.
Sydney went to school and dyed Easter eggs. Today will be her last day of school this week. Tomorrow the school is out for Good Friday. She hasn't had any further episodes of nausea and has had a pretty good week. She does seem to be a little tired in the mornings but I think that is due to some late night partying with her brother. Last night, an hour and a half after we had put them to bed, they came strolling down the hall to our bedroom. Sydney had the typical 4 year old excuse ready to fire. "Graham got out of bed and wanted to come give you a kiss good night so I brought him." She is right at that point in her life where she first deduced (incorrectly, I might add) that she is so much cleverer than her mother or I. She is under the belief that she can do anything she wants in life simply by using her brother as an excuse. She really thinks that she can fool us and is in utter disbelief when we don't buy into it. I wonder now when she will figure out that we know what she is up to.
Graham stayed home and managed to not lock himself into any rooms yesterday which you should be able to tell by now is a huge achievement for him. Outside of being his big sister's pawn in whatever sneakiness she is up to he is a really good kiddo. He is at that adorable point in life where just about everything he does is either cute or funny. He is by far the most loving creature in our household. I just wonder, how many hours do you think this stage of life will last? Overall he is doing pretty well. He is limping but I am pretty sure we have a good excuse for it. Wow, I know everyone in neuroblastoma land just lost their breath. Yes, he has unexplained fevers and a limp. I still can't explain the fevers. We will just have to assume, for the time being, that he had a virus. But, the more bothersome fact is the limp. Fortunately, it seems that we can pinpoint it to a slightly reddened, dime-sized bump on the bottom of his foot near his heel. Now, I don't know what in the heck it is but I am pretty sure neuroblastoma does not present that way. So anyway, it will be another trip to Dr. Debbie's to see what we are dealing with. Who knows, today it might even be gone.
Ainsley is the steady eddy in the whole clan. She, too, is a point in her life that is just entirely too cute. It seems everyday that she is just a moment from walking but she still spends her time crawling across the floor moving from one area of interest to the other. She is independent but always thankful whenever anyone throws her a scrap of attention. Just saying hello to her generally elicits a huge smile. She spends most of the day just trying to keep up with her brother and sister. She wants so badly to be part of the twerp dynamic duo. Ainsley is also the sneakiest of the kiddos. Unfortunately, she seems to be addicted to cat food and will do anything to sneak her way into the cupboard to try and steal a piece from the cats bowl. It is absolutely hilarious. She will crawl over, open the door, and then make a grab for the food. The funny thing is that right before she picks up a piece she will then shake her head as if to say "no" and withdraw her hand. She knows she is not supposed to do it but the draw of kitty food is just too strong. Eventually after 5 or 6 tries and self reprimands she will finally just dig in. We will have to be careful with this one.
Well I had best be off. I have a mountain of work and it looks like my workday will be split by a doctor's office visit. It will be another day of purpose.
4:45 AM 4/14/2006
Pink eye is floating around Sydney's school. Miss Nicole, Sydney's teacher has been infected and everyone seems to be spreading it around again. I mention this because Graham's eyes are looking pretty infected and he is starting to complain that they hurt. I think Graham is slowly just falling apart. We have gone well beyond an "owie" on his foot and an unexplained fever. He scraped his leg on the playground and he now has a 3 inch raspberry on his leg. He also complains that his tummy has "owies." I really don't know what to think about the boy. He is a walking "owie." In fact, no matter where you touch him he will say he has an "owie." I guess he has finally caught on to how quickly we react when Sydney complains of leg pain or the like. In fact, the little Dudely now greets me with his index finger out and saying "owie". I would be more concerned but he seems to change "owie" fingers quite a bit. It is really hard to tell what is really going on with a two year old and it brings back memories of when Sydney was first diagnosed. That is not to say that I think Grahams pain is from neuroblastoma but how difficult it is to diagnose such a small child. Regardless, we now have a laundry list of items to have checked out by Dr. Debbie. Yesterday was her day off and we are hoping to squeeze the clan in for a quick viewing today. The clan? Oh yeah, Ainsley went to bed with a fever last night.
Happy Easter. It is going to be an interesting and purposeful weekend.
4:15 AM 4/17/2006
Well it seems we survived yet another weekend. The Easter Bunny has come and gone. The kiddos had a great Easter. Graham is finally grasping the concept of hunting for Easter eggs and Sydney is now an old pro. They spent a good thirty minutes yesterday morning trapsing through the back forty in search of the little oblong orbs full of sugary fun and parental nightmare. Once they had a good belly full of candy we comminced breakfast. Surprisingly they all ate pretty well.
Now you may of expected that this was a holiday at the Dungan household. The problem is that no one told Lynley and by about 9:30 AM she already had me in my grubbies performing some heavy lifting. Apparantly she thought this would be an excellent time for Graham to be initiated into the world of big boy beds. I spent the rest of the morning moving Sydney's queen bed down the stairs and out to the guesthouse and moving two sets of twins back up in to their room. By the time naptime rolled around Graham's room was back together and the boy embarked on his first nap in a genuine, real official big boy bed. Surprisingly he went right to sleep. The transition was a success.
The evening was not quite as successful. It took forever to get the little twerps to go to sleep. They were so excited about the new arrangements that they thought they would celebrate by jumping on the mattresses and screaming with laughter. It took quite a while to calm them down and to be honest I may have fallen asleep before they did. All in all in was a pretty good holiday weekend and we are fresh and ready to face our last week before we head back to New York.
It will be a busy and purposeful week.
9:05 PM 4/17/2005
You know I am not the least bit tired. I am afraid that tonight I discovered another side effect from neuroblastoma and its treatment. In fact, I was absolutely sure of it. I have been combing through all of my old research of late effects. Now this was no easy job. Let's see, Sydney has had Doxorubicin, Etoposide, Vincristine, Carboplatin, Cisplatin, Cytoxin, Topotecan, and Melphalan just to name a few of her chemo therapies. This, of course, does not include radiation, immunotherapy, IL-2 or Accutane. The list goes on. Side effects include hypotension, hypertension, ototoxicity, hematuria, myelosuppression, peripheral neuropathy, hepatotoxicity, renal toxicity, secondary malignancies, anorexia, hypomagnesemia, nephrotoxicity, tinnitus, seizure, liver toxicity, anaphylaxis, alopecia, immunosuppression, sterilty, hemorrhagic cystitis, cardiac toxicity, arrhythmias, myocardial necrosis, pulmonary fibrosis, bladder fibrosis, stomitus, mucositus, cardiomyopathy, thrombocytopenia, microscopic hematuria, asthenia, paralytic ileus, ptosis, vocal cord paralysis, CNS depression, seizure, pseudotumor-cerebri, hyperleukocytosis, respiratory distress, cheilitis, veno occlusive disease, and, worst of all, even death. But, in all of my research, I did not find one single warning that neuroblastoma or it's treatment caused obsessive lying in four year olds. This is obviously a mistake - perhaps an accidental omission in the drug disclosures? I can not say that (like all of these other risky side effects) I would have not chosen to treat my daughter due to this but the very least they could have done was warn me that this was a possibility. Not only does she have a nasty case of lying but she has it really bad. She doesn't only lie but she lies really, really badly.
Take tonight for instance. Lynley was looking under Sydney's bed for one of baby brother's pacifiers and low and behold she found a giant bag of Easter candy. Sydney immediately told Lynley that it was Graham's and that he had put it under her bed. As if the little Dudester even cared. No offense Dudely but you are not quite of the age to be that quick. You were being framed and we knew it. Luckily, the minute the words left her lips she knew we weren't going to fall for it and immediately blamed it on "I mean, I don't know." I don't know who this "I don't know" guy is but he is responsible for more broken crap in my house than I care to even think about. It seems like every freaking time something breaks or disappears around the house that this "I don't know" guy did it. Take earlier in the day for example. I told Sydney not to eat any of the candy that was in the plastic Easter eggs while she was in the car. When we got home I opened up the eggs to give her a piece of candy and they were completely empty. I asked Sydney were the candy went and she said "I don't know." Funny thing is that I never even saw him and I was there the whole time. I can tell you this though, the minute I get a hold of him I am going to give him a good "I am not as stupid as I look" right between the eyes.
Argh! Twerps!
I've got purpose - make that a double.
5:26 AM 4/19/2006
I could really use a good night of rest. I have overslept and yet I am still tired. I think just about everyone is feeling the same way. Lynley is under the weather. Ainsley is back to spiking fevers in the middle of the night and Sydney has woken up in the middle of the night for the last four nights to complain of an ear ache or that she was scared. My guess is that Ainsley has whatever Graham had last week. She has that same look as though she had been run over by a truck. She has pretty good energy and plays her way through much of the day but it is still clear that something is not quite right. My guess is that she has also been subjected to this virus that is going around. Sydney, I don't know what to think about Sydney. We took a good look in her ears last night and the ear that she is complaining about seems to be draining some gunk. I imagine she just slept on it, allowed the fluid to pool, and that was what was causing the pain. Regardless, it is something that we want to get on top of considering she is starting treatment for her ninth round of antibodies today.
That brings up a whole other sore subject. Our all knowing insurance company has decided to deny us once again for the GM-CSF. They have decided that we really do not need it. I guess the medical journals don't know what they are talking about. Thankfully, BCBS is there to try and guide my daughter's treatment. After all, with all of the medical expertise they have and all of the experience the have with treating neuroblastoma they must surely know best.
There is a problem in our country's medical system when the insurance companies are dictating medicine and treatment instead of the doctors, yet that is exactly what is happening. I cannot choose what is in the best interest of my daughter and I am only allowed to follow the advice of specialists if my insurance company allows me to. I refuse to yield that power to them, regardless of how much it costs. Their decisions would have already cost Sydney her life and I know they have costs the lives of many children and adults before them. Don't be mislead, health insurance companies do not operate in the patients best interest, they operate in the interest of their shareholders. The ethical dilemma is that their grip on the purse strings does cost life.
Can you tell I am a little pissed off?
I owe a $100,000.00 to various medical institutions. We have no maximum lifetime cap on our medical insurance. We have a maximum yearly out of pocket of $3000.00. You do the math. We have always followed the advice of our oncologists. We have always had second opinions by the top specialists in the country that were in agreement with our medical decisions. We have only been treated by the largest children's cancer consortium in North America and the hospital that sees the most cases of neuroblastoma in the world.
I have operated in my child's best interest and I have purpose. Stop screwing with me.
5:24 AM 4/20/2006
I was chastised by Dr. Debbie yesterday afternoon. The stuff coming out of Sydney's ears was infection juice - not gunk. So, yep, there you have it, an ear infection. And, if one wasn't enough (apparently it was not), Ainsley has an ear infection as well. That explains the fevers, the ear tugging, and the malaise. The good new is that they are all loaded up on antibiotics. In fact, I left Dr. Debbie's office with no less than five, count 'em five, prescriptions.
The funny thing about the whole ear infection ordeal is that Sydney refuses to believe that she is sick. In a dire effort to maintain some semblance of sanity and decorum within the household when we got home, I asked Sydney to take it easy. I explained that she was sick and that she needed to rest. Wow, that made her mad - not a little bit bad but Blue Cross Blue Shield mad. She informed me that she was not sick, her ears did not hurt, and she did not need to take it easy. Well, at least I tried. Ainsley, on the other hand, is ill and it took no convincing to cuddle her up on the couch and rest a bit.
Yesterday marked the start of GM-CSF. Luckily someone donated a few vials to us while we go through the continuous appeal process with Blue Cross Blue Shield. It will likely be weeks before they come to the decision to allow us to have the drug and hey, they aren't in any big hurry. After all, what is the rush for them.
I do have to run this morning. I have two really important emails to write. First, Sydney had a reaction to the GM-CSF shot last night. She developed hives, pain at the base of her spine, and a local site reaction. We treated her with some Tylenol and Vistaril (seems to work better than Benadryl for her with hives) and she recovered within minutes. This is the first time that she has ever had a reaction and it has us somewhat concerned. I will be talking with Yichih to find out how she wants us to proceed from here.
My second email is to another mother whose child has reached that point of treatment where they need to make some important decisions regarding antibody treatment. We actually get asked this question pretty regularly. It is a tough decision to make, especially when your child has been through a year of chemo, a stem cell transplant, and their lives are starting to return to them. It is hard to commit to another 6 month plus of treatment when the outcome is unknown. I believe in antibodies but it is a much longer story than that.
As you can see, I have purpose today.
5:30 AM 4/21/2006
Ug! I hope you are not expecting anything poignant today. I have come down with whatever virus the kiddos have spread around and a spent a miserable night of on again off again sleep. I don't think my nose has ever run so much. This is not how I wanted to start our trip to New York. I am hoping that by Sunday morning a can recover enough for a pleasant flight and even more important that I will be raring to go by Monday morning when the antibodies begin. I certainly don't want to be sick when I am around all of those other kiddos.
I will give you a quick recap of yesterday. We talked to Yichih about Sydney and, as anticipated, they asked us to premedicate her with Vistaril. We did and she seemed to tolerate the GM-CSF just fine. Last night Ainsley woke up (she is still pretty sick) and she was having trouble keeping her balance while sitting in our bed. It really worried Lynley. We did not know if it was her ear infection affecting her equilibrium, the fact that it was the middle of the night, or the fact that our covers were not even. The fact is that she just kept flopping over. We considered taking her to the ER room but eventually put her on the floor and she seemed to keep her balance pretty well. She crawled and sat up without falling over - something she was unable to do for the five or ten minutes she spent on the bed. In the end, we decided to let her sleep off the remainder of the night and we would reassess in the morning.
Well, I am off. As you can see this will be quite a purposeful day and I can here one of the munchkins rumbling now.
4:02 AM 4/24/2006
Well, hello New York. We're back! Sydney and I have safely arrived in New York and found our way back to the Ronald. We arrived just before noon yesterday morning and had plenty of time to nap, get all of our pretreatment shopping in, and even go out to dinner at the Wicked Wolf. Sydney was ecstatic to be back to see her friend Bridget who works there. She spent much of the evening being her waitress helper. Luckily it was early and the restaurant wasn't too busy.
I am on the road to recovery. I still don't feel one hundred percent but I am on the mend. I have spent the last 3 days sleeping as much as I could and although I still lack energy I am able to get through the day without too much discomfort. The coughs, sneezes, and ache all over feelings are gone but I just feel tired. I really did not want to get up and get out of bed this morning. I will take it easy as much as I can. In fact, later this afternoon I might even get to sneak a nap in with Sydney.
Today will mark day one of week one of treatment. As you may recall this will be her first treatment round since having her port removed. We have explained to her that she will be getting a peripheral IV and she doesn't seem too excited about it. She has had some really bad experiences with peripheral IVs in the past. Not that I would blame her but I keep hoping that she will say "okay", understand the consequences, and get through it without any trauma. But I know rationally it just isn't realistic. Even I would be bothered by it. Nobody likes to get poked with needles. I just wish that with all of her experience as a pin cushion she could be used to it by now. Not for my sake, for hers. I hate to see her worry. It is my job to make her as comfortable as possible and when you see your child in a state of worry and fear and there is nothing that you can do to make it better it is about the most empty feeling imaginable. She is a trooper and I know she will get through it. I just wish I could make it easier. Today I hope to find the cleverness to help her through this.
Well, I had best be off. It will be a full day of purpose. I pray today will be a good first day back in treatment for my little girl.
4:01 AM 4/25/2006
Day 1 down. Sydney's first day of treatment is in the history books and she actually faired pretty well. I am always prepared for a really rough first and second day back but Sydney really weathered it well. During treatment she only required two half doses of Dilaudad. Recovery, however, was just as long as I would expect on a Monday. Although we left the hospital at noon she slept until nearly 5:00 PM. We are preparing for longer days than usual. Unfortunately BCBS continues to deny coverage of the GM-CSF. The only way we can get it is when we are at the hospital. Because of this little hiccup it adds about two hours onto or day. Normally I would give her the shot before we went to the hospital. This way, by the time we got there and got settled, she would be ready to get under way. We have to wait roughly an hour after we receive the GM-CSF before we can begin treatment for the day. Now that I can't give it before we leave we have to get to the hospital and wait for the pharmacy to dispense the drug before we can even think about getting started. It isn't a huge deal (just a couple hours per day) but it is yet another ridiculously unnecessary nuisance created by my seemingly uncaring insurance company. Boy, how I would love to be a star in one of their commercials. "Blue Cross Blue Shield - We care less than you can even imagine. We are here, in less you need us."
I guess you can see why I could never make it in the advertising industry.
Luckily, I have purpose.
4:06 AM 4/26/2006
Well, I am happy to report that Sydney had another successful day of treatment. She required two half dose rescues of Dilaudad and seemed to manage the pain fairly well. She spent a good portion of the afternoon sleeping but she never really bounced back totally. She spent the evening on the edge. I must be honest though. Today that isn't really what I am thinking about. Oh, don't worry, I will be ready before game time. But right now I am thinking about other stuff. You see, today is my ninth wedding anniversary.
An anniversary is a great time to reflect and reflection is important in a marriage such as ours. Lynley and I kind of have a roller coaster of a marriage. For me the highs are as good as it can possibly get and even the lows are bearable as long as she is with me. The fact of the matter, however, is that our lives are so crazy and fast paced that we forget how much in love we really are. In this sense it seems just like a roller coaster. We are both moving through life at such a fast pace we kind of just depend on our marriage to be underneath us. It always is and it is a great foundation but we both just wish that it could be more. That is why we are so thankful for an anniversary. For a minute we get to slow down and think of how lucky we are to be together. When I get to take a moment and really reflect upon our marriage I realize how deeply in love I really feel. I think much of that is a product of what we have been through together.
With all of that being said, I have to figure out how to make my marriage the priority in my life. It is capable of bringing me more happiness than anything in life. After all, it is a product of this marriage that brought me Sydney, Graham, and Ainsley. But, also, it is capable of bringing me more comfort than anything I have ever experienced. I know that because of our journey with Sydney. This marriage is also my rock. I know, way down deep in my soul, that I can get through anything and I can accomplish miracles with her by my side. These are some awfully powerful emotions but I think I make my point. My marriage is important. It has perhaps the most profound effect on my wellbeing than any other factor. My marriage is to my soul as food and water are to my body.
Then why, I ask, do we not pay more attention to it. I spend so much time simply depending on it. I know it will always be there just like the rock metaphor that I used before and that is exactly how I treat it. The point, however, is that my marriage isn't only a solid foundation. It is also the warm, loving, comfortable, and safe shelter that sits upon it. My effort, my attention, and my nurture are what dictate how nice of a place that place is to live. My marriage should be my number one priority because it is my number one provider. I have to stop depending on it and start growing it. It can be so much more.
I am a lucky man. I have a strong marriage and an incredibly beautiful, intelligent, sexy, caring wife by my side. I have been reaping the fruit off of that tree for too long It is time for me to start caring for that tree. It is time for me to care for the source of so much joy and happiness. For once I am going to put in more to our marriage than I take.
My gift to us this year is the most important thing we have - time.
Lynley, we are my purpose too. I love you honey. Happy anniversary.
4:39 AM 4/27/2006
We have made it through the middle of the week. Sydney tolerated yesterday's treatment well but she had lingering pain throughout the afternoon. Well, at least I think she might have had pain. It is really difficult to tell on days when she is in a Dilaudad funk. Sydney was having a difficult time sleeping off the treatment at the hospital. As I have explained before, she, like most kids become super sensitive to sounds and light. Unfortunately, yesterday was chock full of activity at the hospital. She would awaken every few minutes in tears. First she would state that there was too much noise and then she would complain that she had pain. Generally she would focus on the pain until someone distracted her again. Within minutes she would fall back asleep only to reawaken and begin the whole process all over again.
It was not to long until we were ushered on our way. Real estate at the hospital is valuable and this week the floor is packed. Beds are never empty for long. You might think it was a good thing that we were sent home early. At least there she could get some piece and quiet. Well, ironically the are remodeling the floor above us and the jack hammer was far more alarming than the clowns at the hospital. Sydney spent the next two hours in a stated of rapid reawakening and tears. It was always followed by a complaint of pain. Eventually the noise subsided but by that point she wasn't willing to sleep. She spent the rest of the day in a semi frantic and edgy state. Later that night we would go to Dallas BBQ for dinner. She seemed much better but there was still an air of stubbornness floating around. When we arrived back at the Ronald she would spend an hour or two playing with some newly made friends in the dining room.
I am hoping that today we can get her in a better state of mind. Yesterday felt like torture for her and I want to see if I can't do a better job controlling her environment.
Everyday is full of purpose.
4:33 AM 4/28/2006
The very best part of yesterday is the fact that it is over. Sydney had a very hard day and ironically her actual treatment was only a minute part of it. The problems really began when we arrived. I guess I never thought about it, but Thursdays are lab days. That means that there is a lot of blood to be taken and a finger simply won't get the job done. Sydney was in line for yet another poke. Our nurse tried to get it from her peripheral IV and I think that was our first mistake. It was during this process that I am pretty sure that she blew the vein to kingdom come but, at this point, we still did not know.
It was decided that we were going to have to poke her. We started by looking at all of our possibilities. Unfortunately, Sydney's left arm is almost impossible to hit and I quickly determined that we were going to have to go for the foot. This was the point that I should have stopped the presses. I should have stopped everything and asked for them to put on some numbing cream. The fact of the matter is that I didn't. Sydney tolerated the first needle stick well but as they fished around for the right spot Sydney let out an absolutely bone chilling shriek. This was only the beginning of things to come. I am guessing that they just never hit the vein correctly because it took forever to get the blood out and they stopped to adjust the catheter every 30 seconds or so. As they did it I could feel Sydney's body tighten as the pain shot through her. It was a miserable experience and I hate to see my daughter in pain but this was what we signed up for when her port was removed. Thankfully this part was finally done and we could move on.
It wasn't long before we got back to our room in the day hospital that we realized her other catheter was blown. It quickly sank in that we were going to have to go through all of this all over again. With as much trouble as we have just had I knew this was not going to be any easier. The goal was to hit her arm or hand. A catheter in her foot would have made for a miserable couple of days. Unfortunately, with the size of her veins and their placement in her left arm, finding a suitable spot was quite a challenge. This also meant that numbing cream could not be used as it shrinks the veins. They would try several times over the next hour. My daughter sat in my lap and begged for our mercy. It was one of the tougher things that I have been through with my daughter. My heart just absolutely sank. I know what a IV placement feels like. It isn't fun but it also isn't the worst thing in the world. However, I am also older and more experienced. I know there is a definitive beginning and end. For a four year old there is only fear and without experience there is no real understanding of the process. There is just fear and tears. I don't know the answer. I don't know what I could have done better or worse to bring her comfort. I just know that my heart felt like it was being ripped to shreds. I failed her and I have to figure out a better answer. It is my job to prepare her and she clearly was not. I am so sorry Sydney.
I tell you this not to look for sympathy but because I think it is important to learn from. When you take that port or Hickman out, by choice or not, this is what you sign up for. I could have been more prepared. I could have done something different. I could have made it so much better. I don't know how, but I know I could have. That was my responsibility to figure out. You can bet I will be doing some learnin' today.
The rest of Sydney's day was not much better. She actually finished treatment with less Dilaudad than usual but residual pain would be a real challenge after treatment. In the end she receive almost twice as much Dilaudad as usual and it was 4:00 PM before we left the day hospital.
The good news about a really bad day is the hope that the next one will be better and today is jam packed. In fact, today I get to spend some of "our" (you, me, and everyone else out there in Lunch for Life land) hard earned lunch money. Carl Formato and I will present a check to Sloan Kettering and Dr. Cheung for another neuroblastoma research project. I am hoping that this one turns out to be something incredible but there will be more on that on another day. Our lunches are really beginning to create change and make things happen.
It will be fun to present the giant check but my mind will still be in the right place. Sydney is my purpose today.
4:02 AM 5/1/2006
Lynley and Graham arrived over the weekend and we have had such a blast. In some sense it has been just like a mini vacation. Ainsley stayed behind with the sane group. She is with Mimi and DeeDee back in Texas. Leaving us with one giant stick of twerp dynamite. I don't really recall from school what the ingredients for dynamite are but I think the idea may be the same. You take two relatively calm and benign ingredients, but, when you stick them together they become explosive. That is exactly what we have in Graham and Sydney. We started out with two somewhat calm and benevolent children but when you mix them together you get this huge ball of energy and excitement. Unfortunately, we still have not been able to control this highly volatile compound. So, it still isn't quite ready for public display. The good news is that they are so incredibly happier to be back together again - twerp and twerpfuller.
Friday's treatment went well. Thankfully, her peripheral IV held and the only major squawks were from the fear when we pulled it out. Today we will beginning the process all over again as Sydney has another catheter placed. I haven't figured out any answers but thankfully mom is here to help make it all better. Perhaps a fresh set of ideas will help Sydney cope better.
On Friday, Carl, Judy and I also made the presentation of a research check to Dr. Cheung and Sloan Kettering. We were blessed by a presentation in turn from the man himself. There is way too much to cover in one sitting such as this but I can tell you first hand that it was inspiring. I had asked Dr. Cheung to do two things. First, give us an overview of his research philosophy and, secondly, sell us on how he thinks our research dollars should best be spent. The presentation lasted nearly and hour and, as always, Dr. Cheung was inspired. I am extremely excited about everything I heard. It will probably take days to ply it from my brain but here are some facts that I did not know.
First of all, research on the 3F8 antibody is not only being done at Sloan. Their findings have been replicated at another institution in China. I think that is a huge step and something I did not realize was happening. The second major revelation was in their experience with CNS relapse. Relapses of neuroblastoma in the brain have traditionally been devastating. It is a hard area to treat and most children have succumbed to the disease relatively quickly (6 to 9 months). Sloan's new protocol for CNS disease has totally changed that and after accruing 14 patients over the past two and a half years not one has succumbed to the disease and I believe all are clean. In short, if your child has had a relapse in the brain, Sloan is definitely one of the first places for you to call. Third, they have virtually eliminated secondary cancers in the patients they have treated. In a time when the rest of the COG seems to be adding more toxicities to their trials, Sloan seems to be cutting back. In this way they are removing toxic deaths (10%) and secondary cancers(10%) from their survival statistics. This boosts their survival statistics tremendously. The question becomes, will their reduced treatment regimen continue to hold water? Will they maintain their successfulness despite the reduction in therapy?
The rest of his presentation went very well. He provided published EFS statistics in comparison to the COG gold standard of why the philosophy at Sloan seemed to be working. Now mind you, I happen to like Sloan but I don't put too much into their statistics or the ones publishes by the COG. Depending on which numbers I use and from when I can consistently make Sloan look approximately 30% better or exactly the same when it comes to overall survival. I am a nerdly statistician and am well aware that numbers do lie. To make a long story short I expected him to show published statistics of why Sloan was better, he did, there you have it. I am not so impressed with what the numbers are as to how they achieved them and this is the great misnomer in the neuroblastoma world and the subject of debate for another day.
Now, yes, that was all exciting, but what he wants to do with our money is even more exciting. It could absolutely revolutionize what we know and can do about neuroblastoma. I would not be overstating myself if I said that we just put the race for a cure into overdrive. However, that discussion too, must wait for another day. I have to run. This is Lynley and Dudely's last full day in New York and it will be a busy purposeful one.
It seems my purpose to cure this disease is as explosive as my twerpful purpii.
4:19 AM 5/2/2006
Good morning!! Well, it is Dudely and Mommy's last day with us in New York. In fact, Lynley is up and packing their last minute items now. Overall, yesterday was a success. Mommy took the treatment reigns and I got to kick back a little and spend some time with Graham. Sydney's day went well. Mommy nursed her through the scary moments of having her new peripheral IV placed and was even ready to present her with some candy when the ordeal was over. The treatment went fairly well and, although I missed a portion of it while Dudely and I were at the park, it came and passed without any major hiccups. Sydney had her usual two half doses of Deluded and seemed to manage her pain fairly well.
The only problem was the fact that Sydney chose not to take a nap in the afternoon. Se was borderline unbearable in the afternoon and evening but with it being Mom and Grahams last day we decided to break a few rules and let her out and about. Yesterday afternoon we went to Times Square where we visited, you guessed it, Toys R Us and Bubba Gump's. Well I would really like to stay and chat but I really have to run. We have our hands full if we are going to get everybody ready and out the door this morning. Lynley and Graham will be leaving for the airport at about 7:30 AM.
Although I will be lonely again I know I am not alone in my purpose.
4:41AM 5/3/2006
Here we are alone again. Sydney had a pretty good treatment day. I must admit that I like the status quo even if pain was involved. Predictably Sydney received two half does of Dilaudad. The pain came and went - as it was supposed to - and she spent the remainder of the afternoon sleeping away the Dilaudad. All in all, it was a nearly perfect day of 3F8s. The only hitch appears to be her peripheral IV which was already starting to act up yesterday. Sydney was complaining of it hurting and it was evident at the beginning of treatment that she would not be able to tolerate the full rate of some of her meds. We worked around the problem and eventually found a solution that worked for her. I am hoping that today it will continue to hold. Sydney seems to have moved on from the experience last week but I am still affected. It is funny how that works. Perhaps, it is time to take the lead from my daughter again.
I am still reeling from my discussions with Dr. Cheung last week. As a part of the foundation we still have to weigh the pros and cons of Dr. Cheung's proposal but I am still incredibly excited. His proposal was exactly the type of research that I had in mind in the very beginnings of Lunch for Life. Then, I wanted something that would truly make a difference. I wanted to make an impact in the research world of neuroblastoma. I wanted to speed up the road to a cure and I wanted it to happen fast. I always realized that the research may not come in time to help Sydney. Heck, I am still hoping that she is one of the lucky kids that has already found it. Regardless, I knew the process was slow and whatever we did today was potentially a decade away from saving our kids.
One of my main frustrations with research is that it takes time but, as we look around, nothing really new sees to becoming down the pike - well, no silver bullet. There seems to be lots of quality science going on. There are the myriad of projects going on at the NANT. There they have MIBG, Fenretinide, PZA, BSO-Melphalan, Zometa, CEP-701, and Temozolomide among others, but nothing, that screams cure. The COG has their antibodies (which are accruing incredibly slowly), their standard set of protocols, the purging question, and the upcoming tandem transplant investigation. Sloan has the 3F8, their vaccine, decreased toxicity, among others and St Jude who has their vaccine and although they have all of the money in the world seem to have less published neuroblastoma research than anyone. My point is that progress is being made but there aren't any projects that just scream major change. It feels like there is nothing in our immediate vicinity of saving all of these kiddos and the ones to come. It isn't that I don't appreciate all of the work of our dedicated team of neuroblastoma specialists worldwide. They work tirelessly and they certainly aren't in it for the money. There are limited resources, limited dollars, and limited test subjects (yes, that would be our kiddos). I just wish there was more. I wish we had an inkling that a cure was on the horizon. I wish there was a rapid way to test all of the drug compounds that are known to find the one that would work.
And that was where Friday came in.
Our purpose is getting retooled.
4:47 AM 5/4/2006
There are only two more days before we go home. Sydney tolerated yesterdays treatment rather well. In fact, she only had 1 half dose of Dilaudad, no residual pain, and she maintained a respectable heart rate. For those thinking this might be a HAMA though, think again. There is still plenty of pain floating around. Unfortunately yesterday afternoon Sydney resisted taking a nap and it was pretty evident. She was easily rattled and argumentative. The good news however was that once I convinced her to put her head down on the pillow she was out like a light.
Well I finally have a few minutes to talk about Dr Cheung's proposal entitled "Preclinical Drug Screening for Advanced Neuroblastoma." A major hurdle to successful treatment is the limited number of agents active for neuroblastoma. To accelerate the identification of active therapeutic agents for patients with neuroblastoma, they propose the establishment of a preclinical drug screening program that would perform high throughput screening of large compound libraries as well as promising individual compounds and validate them both in vitro and in vivo against a large panel of neuroblastoma cell lines. The overall strategy would be:
1. establishment of a highly characterized and validated panel of neuroblastoma cell lines for primary and secondary screens and xenograft development,
2.high-throughput screening of approximately 200,000 compounds in 3 representative neuroblastoma cell lines,
3. in vivo confirmation of positive hits from the high-throughput primary screen on the entire NB cell line panel,
4. in vivo testing of the most active agents in orthotopic NB xenografts, and
5. subsequent analysis to understand the molecular targets of individual active compounds and their mechanisms of sensitivity or resistance.
The most promising agents obtained through this methodology would then be prioritized for phase I and II clinical testing, both at MSKCC as well as in cooperative groups in the US and overseas. The good news is that the libraries containing the 200,000 compounds are already available in-house, this strategy can be implemented immediately.
I can go into a lot more detail but those are the important facts. The really incredible part of this is that this entire process can all happen in 3 years. Yes, in 3 years we can test over 200,000 drug compounds against neuroblastoma to see what works and then selectively whittle those down to the most promising agents. Just think, in 3 years we can be delivering the most effective agents known to man against neuroblastoma to our children. Now that is fast. The beauty of this whole proposal is that the technology already exists and it is present at Sloan. This technology has already been used for some adult cancers but has never been utilized in pediatrics. Now this begs some important questions like: What kind of benefit has this screening provided to adult cancers? And, that is just one of the questions the foundation is asking before we fund this project. We want to know that this project is as potentially meaningful and important as we believe it to be.
Now with all of that being said this is a 3 year project costing approximately $250,000 per year. Quite frankly, we did not commit to that much but what we are committing to is a pilot project. Hopefully we can prove enough of the science and the efficacy of this venture that the importance of what we are doing will be self evident. Hopefully, the research will be promising enough that we will be able to encourage others to fund this important work as well.
Well unfortunately I have to run. Today will be full of not only treatment but packing and cleaning as well. Tomorrow we will be going home.
It is an exciting time for my purpose.
5:34 AM 5/5/2006
Good morning! I am in a race to get everything cleaned and packed before we fly home today. I just wanted to drop a note to let everyone know that Sydney is doing well. Yesterday was the best of this treatment round. In fact, I thought we were going to make through without any Dilaudad. We didn't but in the end she required only a single half dose. Unfortunately, Sydney also had to have her peripheral IV changed. The one from the beginning of the week was just no longer cutting it. Luckily it went much smoother this time.
After treatment today we go home. We will be a family again and I do realize how incredibly lucky we are to have that.
Our purpose is coming home.
4:51 AM 5/8/2006
It is so incredibly nice to be home and together as a family again but, I must admit, the feeling is bittersweet. In one since I am so appreciative to be home and hugging my family. We have spent the weekend playing together and doing all of the things a family should be doing. But, with every minute, spent there was certainly a tinge of hurt. In some sense I felt guilty. You see, there is another family back in New York that is not that much different than ours. They went to New York two weeks ago with thoughts very similar to ours of just getting through another treatment until they could be together again as a family. Allie has been one of Sydney's favorite playmates whenever they have both been up in New York. I have to admit, Allie has always been one of my favorites, too. In fact, everybody I know thinks she is about the cutest thing there is. I don't know what it is about her. On American Idol they always talk about the singers having the "x" factor, that little special something that makes them a star. Well, whatever that is in kid cuteness, Allie sure seems to have it.
Allie was up in New York for scans. She is one of that group of kids that is a part of this new brain relapse protocol. She has not been too far in the treatment itself. In fact, I think she was one of the latest to begin this new treatment protocol. At some point just before her trip she had a seizure. From what I understand it was not a major seizure, but a seizure none the less. They were bringing her up for an MRI before treatment was to continue. Nobody was really expecting too much. With the success of the trial thus far this just seemed to be rather routine. We were looking forward to spending evenings with them in the dining room as the kids played.
I remember seeing Allie and her mother at the day hospital on Tuesday. She was playing with the lights on the wall - a favorite pastime of many of the kids up there - as her mother was talking to one of the other parents. I remember smiling and saying hello as I quickly wheeled my Dilaudad induced, post treatment, princess quickly down the hall. That evening I would pass them again as they went to Central Park with another family.
The rest would become a blur. In the middle of the night she would have another seizure which would end her up in the ICU. The next day she would be released but the news was not good. The MRI had come back and it was bad. Apparently there was some type of hemorrhage. The facts are hazy as most of my information is second hand but the long and he short of it is that this sweet loving child was given only days to weeks to live. Her condition is irreversible. As we left New York her family was flying in. Allie had been moved from ICU and was now in the hospice wing at the hospital. She was on morphine and, although she was itchy, was able to play and spend time with her family. Now remember, a week ago she was no different than any of our other little warriors. She was just going up for a scan and another round of treatment. It really hits home how fragile life is, how lucky we are, and how unfair this disease is. With every moment that goes by I think of where I am and what I am doing and then what their family must be going through . It just isn't right. It is senseless. I pray for Allie and her family's strength and comfort.
Some days a purpose just doesn't seem like enough.
DELAYED from 4:34 AM 5/9/2006
This morning I woke up to no internet access so I really don't know if this will make it up today. None the less, I am glad to report that everyone made it through day 1 of reality. Martha has left town to care for her sick mother and it was left us, DeeDee, and Mimi scrambling to cover for the kiddos. Yesterday, was the first day and I am happy to report everyone is doing great. Sydney's first day back at school went smoothly. She was so happy to see all of her friends. It is funny. She was obviously nervous before going to school. She was coming up with all different kinds of excuses not to go. It ranged from "I don't want to" to "I don't feel well." Lynley and I knew what was going on right away. Sydney started off the morning by acting like a kitty cat. To this day whenever Sydney becomes nervous or scared she still reverts to acting like a feline. The behavior is predictable. The moment she is out of her element she puts her little paws up under her chin and the meows floweth. She was trying in all of her earnest to keep us from taking her to school and even resorted to telling us all of the bad things her friends do in the hopes that we would keep her home. By the time we arrived at school she had pretty much recovered and within minutes of my departure I am sure she was back to her old tricks. When afternoon rolled around and I made it to her school to pick her up she was reluctant to leave. She is already at that age where it is becoming less and less cool to be around her Dad. I could see her eyes roll as she told her friends that she had to go because her Dad was there to pick her up.
Graham and Ainsley seemed to have a pretty good day as well. Graham and DeeDee stopped by my office on their way to the park and from what I could tell they were having a grand old time. By the time I arrived home they were both nestled in for their afternoon naps. Graham had awoken by the time I went to pick up Sydney from school and we would spend the afternoon together. I felt like a couple of superheroes. I don't particularly know why but two year old little boys are pretty animated and I just had this feeling that he was my little super helper - Super Dad and his sidekick Dudely, the twerp duo, off to pick up the kids from school. Me and my suburban and PDA and the Dudester with his Dora blanket. We are quite the pair. I didn't say we were changing the world. We are just starting out as a super hero team and are beginning with the basics like carpooling and helping to prepare dinner. Regardless, I love having my little buddy there by my side. Today I have kiddo duty starting about mid morning and, to be honest, I can't wait.
Well, I had best be off. Without internet access my purpose will be even harder today.
5:04 AM 5/10/2006
Oh, it is so nice to actually wake up and have some internet access. Other than the fact that we spent much of the day without any internet connectivity, yesterday went pretty well. I had the opportunity to spend some quality one and one time with my super-twerp sidekick Graham. After being away for two weeks with his sister I really needed my Graham fix. Even though I am lucky enough to be able to spend quite a bit of time with my kiddos I rarely get to spend one and one focused time (outside of treatment) on my children. It is so rewarding to play man to man instead of zone. It feels more personal and it feels like I am participating rather than refereeing.
With all of that being said I have come to the realization that my kids have become addicted to beatings before bed. Well, beatings may be a bad reference. We don't actually spank, hit, or provide any physical type of punishment in our household outside of placing them in the naughty chair. Years ago Bill Cosby produced a comedy video where he talked about his children and family. Before I had children I though it was really funny. Among many extremely funny sets he talked about how his children would not go to bed without being beaten and no matter how much he did not want to beat them it was the only way that they would go to sleep. He described how, every night, he would put his kids to bed upstairs only to hear the pitter patter of little feet hit the floor as soon as he left the room. In fact, he did an entire routine of talking to the ceiling - a skill I have become quite adept at. Regardless, if you haven't seen it this is one of the greatest comedy sets of all time and I would recommend it. Bill Cosby was a great family man and father and his ability to capture the human experience of parenting was both incredible and hilarious. I tell you all of this not just because I thought it was funny. It was. But, once I had children, I realized he wasn't joking. This was reality. My gaggle of twerps will not go to bed until they have been punished severely. It is absolutely insane. Every night we can put our brood to bed with smiles on our faces and love in our hearts. We can read them stories, snuggle, give them soft good night kisses - you know - all of that great stuff that makes being a family so warming and worthwhile. As soon as we leave the room, however, the war begins. Our sweet model children morph into little lying, sniveling, balls of twerptitude. They will not stay in bed and go to sleep until we have stripped them of all of there creature comforts. We must take away Graham's pacifier, we must strip them of there snuggle blankets, we must yell at them, they must cry and scream. Then, and only then, will they drift off to peaceful slumber. Don't get me wrong. We don't want to. But this, this is the only way they will go to bed. Otherwise, they will stay up until all hours of the night.
I just never realized how true Bill Cosby was. I thought he was funny. I just never realized that he was also actually telling the truth. My kids simply can't go to bed without their beatings.
Perspective and purpose - two necessities of a happy life.
5:38 AM 5/11/2006
My wife and I had a date last night. That left Sydney, Graham, and Ainsley in the capable hands of DeeDee and MiMi. Lynley and I went out early. We had plans with some friends at 5:30 to celebrate a birthday and then we would follow that with a glitzy dinner at the Silver Fox, a local steakhouse. DeeDee and MiMi (the mothers) would be in charge of entertaining the kids for a half hour, feeding them dinner, getting them ready for bed, 30 minutes of wind down time, and then finally nestled into their beds between 7:30 and 8:00. The kiddos were left in capable hands.
During the day both MiMi and DeeDee laughed about my diary entry. The thought it was funny although my language (the term "beatings") was probably a little strong. The didn't think much more of it. I told a story in my diary and that was it.
Lynley and I returned home after our lovely and romantic dinner at about 9:00 PM. We heard noises upstairs. First we heard some giggling followed by the rustling of sheets, and then a stern reprimand from my mother. We immediately made our way upstairs to their room to find my mother on the floor of their room. Our kids were not asleep. Hmmm. Go figure. My mom said that she was getting ready to start taking away blankets, etc. if they didn't go right to sleep. She was perched on the floor looking for any signs of movement or weakness. We thanked her and then immediately went through the process of re-putting the kids to bed. We went through our routine and then I made my way downstairs as Lynley topped them off with their last pre-sleep snuggles.
I found my mother and Marjorie out on the porch. I asked them what happened and they said that the little twerps just wouldn't go to bed. I asked if they had played with them. They said yes. I asked if they made them dinner and ate with them. They said yes. I asked if they snuggled with them on the couch to calm them down before bed. They said yes. I asked her if they gave them good night kisses and loves and cuddles. They said yes. Did they have a nice complete evening full of all of the wonderful things that would make a day complete? They said yes. I then asked if they gave them their beatings.
You see the mothers thought I was just telling a funny story. They, like I the day before, thought of me just like I thought of Bill Cosby. He just told a funny story. It wasn't reality. It was just some funny comedy. The mothers were now coming into the reality that the story, although funny, was also absolutely true. You see our kids get into bed after a complete day. After they had all of the activity, love, warmth, full bodies and souls they sit nestled in their beds. And they think. They think -
"Hmmmm. What a wonderful day! What a wonderful day I have had. But something is missing. I can't possibly go to sleep. I know what it is. I can't go to sleep now. I haven't received my beating. I can't possibly go to sleep until I have been in tears. I can't go to sleep with my pacifier and blanket. Everybody is happy and peaceful. This is unacceptable. I absolutely can not, will not go to bed without my beatings."
And so the night goes on. I don't know what it is, but it is so absolutely true. My kids can't go to bed without being in tears. After all of the love and happiness in the world they just won't go to bed satisfied without their beatings.
I guess I understand
I don't go to bed without my purpii either.
5:43 AM 5/12/2006
The children have been tired from trying to party all night. Yesterday Sydney and Graham were obviously just completely drained. Both woke up in irritable moods and although there were flashes of sanity their days were filled with drama. Graham had several meltdowns and Sydney uncharacteristically got in trouble at school and was fairly unmanageable. It is clear that the nightly routine of staying up and partying is starting to affect them. Over the last few days I have joked about their antics but Lynley and I are going to have to retool our game plan. Taking away their blankets and pacifier does not seem to be doing the trick. The punishments are certainly bringing tears but not the desired result. I am happy that my son and daughter are having so much fun together and getting along so well but this nightly ritual must end.
Lynley and I discussed alternatives last night. Isolating the reason that they won't go to bed seems to be the tricky part and the key to correcting the behavior. As it stands now it seems almost as though we are rewarding the behavior. Although we are punishing them for sneaking out of bed and playing it seems as though the punishments are also bringing about their desired results of staying up and getting some more attention by mother and dad. Our best idea has been to wear them out. Last night we took them for a long walk in the hopes of tiring them out. Unfortunately, it did not work. They were tired right up until the time that they dawned their doorway and then it was as if a shot of adrenalin hit their bodies. This weekend we will have ample time to experiment with new techniques while being in full control of their days. Our next idea is to ignore the behavior and see if the lack of our attention actually curbs the behavior.
Ainsley, however, as always, has been a perfect little angel. It appears that it may only take two practice children to learn how to be a parent.
Have a Happy Mother's Day.
It looks like this weekend will be a full of purpii.
5:45 AM 5/15/2006
Good morning! I had an awful night of rest. Routinely I get reminders of what Sydney has been through and what she continues to go through and it just completely shocks me. It really puts into perspective all that she endures. In some ways I am thankful that she is so young and knows no other life. Somehow that comforts me knowing that she knows no other way. Because of that she seems much more able to endure and adjust. I, on the other hand, am older and have experienced life without any major hurdles so when I am afflicted with anything out of the ordinary I really get a healthy dose of her reality. This weekend it was hives.
On Saturday night I awoke about 10:30 PM covered in hives. Sydney has had them several times throughout her treatment. I recall on several occasions trying to figure out how to help her deal with the itchiness when I myself had never had them before. I don't know whether you have ever had hives. This was my first bout and I was covered. They covered just about every contact point with the bed on my body and they itched to the point of being painful. I was miserable. Lynley was nice enough to provide me with some relief in the form of 50 mg of benadryl. With that the itchiness subsided but the sleepiness set in. I would take another dose early Sunday morning. That was a bad idea. I was an absolute Zombie for Mother's day. I would forget conversations almost as soon as they were spoken and I had absolutely no ability to concentrate. I was tired and useless.
After our Mother's Day feast at Blue Mesa they brought Ainsley and I home and put us to bed while Lynley, DeeDee, twerp 1, and twerp 2 went shopping. I slept for 3 solid hours and still felt groggy. In the early afternoon Lynley, my pocket pharmacist, would supply me with 20mg of prednisone. Luckily that cured me - at least temporarily. The rest of the day I would be a functional zombie. I was able to grill out dinner and keep up with the kiddos.
At bedtime last night I would take another smaller dose of benadryl. I was hoping to stay away from the hives and get a good itchless night of rest. Unfortunately, my sleep was raided by nightmares. I spent most of my night going through test results and relapse scenarios with Sydney's doctors. I woke up several times in tears, sweating, and shaking from fear. It felt like those first few weeks after Sydney's diagnosis. It was sheer terror. The good news is that they were only dreams and although gruesome and terrifying they were over as soon as I opened my eyes and regained my composure.
This morning I woke up covered in hives again and here becomes another day of itchiness.
I don't really tell you this to comfort or gain any sympathy myself. This is my first time having hives and I am itchy, painfully itchy. But, keep in mind, Sydney has gone through this almost routinely. This is a relatively benign part of her treatment. This stupid little reaction is just an ordinary part of her life. It brings me back to the reality of her situation and once again I find myself amazed at her endurance and composure. She is four. She is a twerp. She lies. She won't go to bed at night when I tell her to.
She is my hero.
What an incredible purpose!
6:00 AM 5/16/2005
Yesterday morning I went to the doctor. They asked me the usual slew of questions. Had I been around anything new? Had I eaten anything different? Had I changed soaps or detergents? I had already racked my brain on this particular subject and I did not have anything new to offer. Finally they asked me to tell them what I had tried to do to alleviate the problem. I told them that I had taken 50mg of benadryl on the first night and although it alleviated some of the itchiness it mostly just made me tired. I told them I reduced the dose to 25mg but all that it really did was to make me sleepy. Then I told him that I took the 20mg of prednisone which seemed to work perfectly. He asked where I got the prednisone and I told him that it was from my dog. He gave me one of those strange looks I told him we had a 100 count/5mg bottle of pred at home that we kept for our itchy dogs. He wasn't really impressed. He asked why I discontinued the use of my dog's drugs and went to see him. I told him it was because my veterinarian's office was closed on Mondays. He did not seem to appreciate that either. Regardless, after a stern lecture about mot taking my dog's prescription drugs, he gave me a script for a 21 count bottle of 4mg prednisone and some Alavert. I have a five day course of tapered dose Prednisone and so far it seems to have worked almost immediately. I am happy to say that I am itch and hive free.
The kids are doing well. Lynley took Sydney and Ainsley to Dr. Debbie yesterday for a look at their ears. Ainsley has a habit of tugging at her ears and we just never know whether she is sick or not. She had been crabby the night before and Lynley thought it might be best to have her ears checked out. Sydney, too, was complaining that she could not hear out of her kitty ears so we thought it may be worth a visit for her as well. The batteries in her kitty ears were brand new and when we had left New York the last time they had mentioned that one of the tubes was sitting at an angle and we need to keep an eye on it. We figured that this was a perfect opportunity for a twofer. Thankfully both are just fine.
Tonight will be Sydney's school play. Lynley and I really don't know the specifics but are looking forward to seeing her and her classmates dance in their poodle skirts.
Tomorrow I will be leaving to Los Angeles for the International Advances in Neuroblastoma Research meeting. This year the CNCF is one of the sponsors of the event. The meeting is held every two years and it brings all of the specialists from around the world together to discuss the advances in the treatment of neuroblastoma. I am not expecting to hear anything dramatic but am hoping to get the opportunity to meet with many of the investigators. I hope to bring back a bunch of information.
Well, I had best be off. All of the twerps have arisen and it is time to get the day started. This will be my last full day to help Lynley out this week.
It won't, however, be my last full day of purpose.
6:35 AM 5/17/2006
Everyone is fine. I had a late night getting ready to get out of town and just don't have the time to write much before my trip to LA. Sydney's program was a smash. There is nothing quite like seeing seven 4 year olds bogeying away to 50's music on stage. It was cute. Graham had a mental breakdown he so desperately wanted to get up on stage and dance with his sister. Momentarily, the big stud and I had to leave the auditorium for him to regain his composure. Late last night Ainsley broke out with a 101.8 fever. The day before we had her inspected by Dr. Debbie and she got the seal of approval. It is amazing, when Mommy instincts get into overdrive, I think she can sense a problem before the diagnosticians can even find it. Regardless we are hoping it is related to some teeth that are coming in. It isn't exactly the condition that I wanted to leave Ainsley in Lynley's hands but I know she can handle it. As much as I will miss my brethren this trip to LA is important too. Well, I had best be off. It is time to get the kids up and get them ready to school before I race myself to the airport. I hope to be able to update my diary from there.
For the next few days my purpose will be split across the country.
4:39 AM 5/22/2006
Well, I am back and have been thrust right back into reality. The trip was phenomenal and I hope to spend the next few days sharing and documenting all that I have learned. For now, however, we are back in the midst of scan week with Sydney. This morning she will be having her bone marrow biopsies. In just a few short hours we will be making our way to the clinic. Her procedure is scheduled at 11:00 AM. I think I have become more and more nervous with every set of scans. You might think it would become easier with experience (some day that might be true) but knowing the rate of relapse it still seems to be getting harder. It will be a hard and stressful week on our family.
What an absolutely incredible trip that was to Los Angeles. To say that this was just another ordinary and average informational conference would be a gross misunderstatement. Right now, the experience certainly seems life altering and I only hope that I can hang onto the emotion so that I will not forget how motivated I am. My mind is flooded with ideas and, although I am exhausted from the trip, I feel like I have control and can make a difference. So why does a conference with a bunch of clinicians and researchers create such emotion and empowerment in a daddy from Fort Worth, TX? Well, I only wish I knew the answer so that I could bottle it. None the less, maybe sharing my experience will at least document it so I can recall how wonderful and empowered I feel.
It all began with the opening statements of Dr. Bob Seeger, the outgoing president of the ANR (Advances in Neuroblastoma Research). First, I should probably preface some of my feelings regarding Dr. Seeger. Ironically, his appearance is similar to that of my father who passed away when I was fifteen. His mannerisms and gestures seem eerily familiar. Dr. Seeger and I have crossed paths many times throughout Sydney's treatment and my efforts to learn more about the disease. Many families of children with neuroblastoma probably don't know it but it is very likely that their child's information and care has probably passed through his hands. He is a pivotal player in the world of neuroblastoma treatment and research and although I would not call him the king of neuroblastoma he certainly plays a role in the royal family of heroes that fight for our children everyday. Dr. Seeger is very much a father figure to me in the world of neuroblastoma. I always feel comfortable when he is around. He goes out of his way to care for our families. He is a benevolent and compassionate warrior.
As I walked into the convention hall I was amazed at the volume and diversity of the people around me. Just before we began there was an air of excitement and chatter. I was surprised to hear so many different languages. In Dr. Seeger's opening remarks I would be further awed by the fact that there were over 400 participants from 19 countries. Throughout this conference they would be presenting 358 abstracts on neuroblastoma research. The amazing thing was that the room, outside of 5 or 6 parents, primarily included the presenters. It was extremely comforting to know that there were literally thousands of other technicians and researchers in the background who did not make this journey. Although at times it feels like we families damn near face this disease alone, it was a shocking awakening to the fact that there are literally thousands of people fighting this fight with us in the name of our children - angels, those in the battle of their lives, and those unfortunate families who don't yet know that they will be stepping into our world.
In some ways I felt like I was a spectator in the first row at the Super Bowl. As many know about me I am quite the research nerd. I still read the pub med articles pretty religiously and I have come to know most of the researchers involved with neuroblastoma by name. Putting faces with names was fun but the amazing part that really awed me was seeing so many of them who have made such meaningful discoveries in the world of neuroblastoma over the last 30 or so years. I can literally say that their discoveries are the reasons that Sydney is still with us today. I know the history of neuroblastoma and know for a fact that if it was not for many, many people in this group my daughter would not be with us today. From the decision to include a transplant, to Accutane, to the complex combinations of drugs that oncologists use to care for our kids, this room contained the people who made even the most basic of discoveries. There are so many decisions and treatments that we take for granted today that not very long ago were important discoveries of these researchers. We are always clamoring for more research and ultimately a cure but we have to realize how we got to where we are today. I owe them more than gratitude. Because of their dedication to understanding this disease I can touch her. Many have dedicated their lives and sacrificed time with their own families for our children. I will not forget. We are not alone in purpose.
4:55 AM5/23/2006
So what did I learn at the Advances in Neuroblastoma Research Conference? Well, with over 350 research abstracts I would be lying if I said that (a) I understood or (b) even read them all. I can however say I made a fairly earnest effort at skimming most of the abstracts and posters. The first half of the conference focused heavily on genomics, molecular and cell biology, and tumor biology. I will only admit to attending a few, perhaps 10, of these types of presentations. This science is important in the big picture of solving the puzzle that is neuroblastoma but requires a pretty extensive medical background to really comprehend and for me, intense concentration. I was only able to attend a small number of these presentations in succession before I became numb and found my mind wandering. Instead I spent much of this time discussing clinical research and research politics with the many clinicians who also spent many of these hours in impromptu workshops in the hallways. This information was extremely beneficial. It was during these discussions that I got a good dose of the political, monetary, and philosophical differences challenging this community.
The problems in the research world seem to always change but the basic roots remain the same. There are two major hindrances to finding a cure - money and patients. As I stated, we have heard these before, but I received some important examples of these critical problems. The lingering problem seems to be related to the ANBL0032 antibody trial that Sydney participated in over two years ago. The problem is that this trial should be completed. In fact, we should just be waiting around for results. Unfortunately, the NCI predicts that, because of slow accrual, it will be another 6 years to complete the trial at this rate. So, to make a long story short, they have tacked this trial on the end of the new trials. The problem now is that, because we are waiting for this trial to complete, we will have to wait to ask other research questions, questions that are at least as important or more so than this one. This creates a rather large ethical dilemma.
It frustrates me to no end that we won't be testing new drug combinations in the upcoming trials because we are waiting for this one to complete. We are dealing with some seriously potent drug combinations that aren't toxic to our kiddos. I imagine that they will sit on the shelves for 4 or 5 years before we try them and it is sad because they are probably the most powerfully active agents that we have seen in neuroblastoma in recent years. Unfortunately, they won't put these drugs up against the antibodies because it would be even more likely that no one would elect to enroll in the antibody trial.
So why aren't people electing to enroll in the antibody trial? This is so incredibly unfortunate. I think the problem is two fold. The first issue seems to be misinformation and the second issue seems to be that special little friend - the dollar bill. Many institutions choose not to offer the trial because it requires more staff training, an out of pocket expense. They elect not to offer it because, although it shows some promise, they see it as an unknown. In other words it may or may not benefit their patients so why invest in the training etc, for a few, if any, patients. Here in lies the problem. If I have heard it once I have heard it a million times and it is really stuck in my craw. So, without any further adieux, here I go to launch publicly into my biased opinions on antibody therapy.
First off, we do know antibody therapy works. We know antibodies kill disease. It is simple. Kids have disease. Kids get antibodies. Kids don't have disease anymore. I have seen it with my own eyes. They work! Now, do they work on every kid? No! But, do they kill disease? Yes. Do they affect overall survival? Maybe. But do we care? Well, it would be nice if they if they increased the number of kids that actually survived neuroblastoma but, to be honest, I personally don't expect it. Only time will tell. But will antibodies extend life? Will they buy time until a cure can be found? Will they defeat lingering disease? I think the answer to all of these will be yes. Everybody seems to be using the carrot of a cure and overall survival as the bench mark for drug effectiveness and I think that is a major problem. We don't act this way about doxorubicin or cisplatin. We don't say, "Well, hmmm. I don't think I will use that drug because it isn't proven to produce a cure." The fact is that although antibodies may prove to be curative in some children we don't really know about that. I, however, see that as a "nice to have" but not a "need to have." You see, I think antibodies are effective like a transplant. They are good at seeking out these hidden tumor cells. I think it is possible that we will find out that antibody therapy will be just as effective as a transplant. I think, however, that because they are administered right after transplant their effects are masked by it. This is why I think we will see lingering survival. I think we will see that the continued therapy will extend the lives of the patients who were going to relapse after transplant. This could very well be one of the reasons that Sydney has survived. This trial may have been the difference. After all, Sloan Kettering has dropped their transplant in favor of antibody therapy. They are asking this question with the 3F8 antibody right now. You see antibodies are really no different than any other therapy. Like chemo, it kills tumor cells. Like chemo, they don't work on every kid. But, unlike chemo they don't have the long term toxicities. They don't wreck the immune system. They don't put vital organs at nearly as much risk. I want to scream to the world. Antibodies are just another tool - just like chemo, just like transplant, just like radiation, just like Accutane - they are just another tool to help us defeat this disease. They are a less toxic alternative to the bombs that have already been dropped on our children. They are another chance to survive. So, when people ask me whether they should partake in antibodies, this is my answer. They can make a difference and if we had to do it all over again we would.
Well, I had better get off my podium. This is not what I meant to talk about today. As I said yesterday, I am fired up and ready to go. Hopefully tomorrow I can get back to some of the other things that I learned at the conference.
By the way, Sydney's bone marrow aspirates and biopsies went well. She came out of the procedure just fine. We are, of course, still anxiously awaiting the results. It is a nervous time around the Dungan household.
My purpose is anxious.
5:22 AM 5/24/2006
I am absolutely ecstatic to announce that both Sydney's bone marrow aspirates and biopsies were clean by morphology. Of course this isn't the end all, be all on Sydney's condition but it is one indicator that she is clear of disease. We still have the RT-PCR results of the marrow to wait for and today she will have her CT scan and MIBG injection. The CT of the orbits makes me pretty nervous. Unfortunately, neuroblastoma has a habit of coming back in the head and it is a pretty scary proposition. This is one of those unknowns in cancer that I would really like to know the answer to. If, in fact, there is a blood/brain barrier then how come it doesn't stop cancer from hopping over the line and why do so many relapses from so many cancers go to the brain. Regardless, I am appropriately nervous. The other thing that scares me about the CT scan is what we saw on our last scan. Oh sure, I know a little spot of air space disease (not neuroblastoma) is nothing to worry about in the big scheme of things but it is the "What if it wasn't air space disease?" that has me bothered. You know, I thought scan week would get easier as we went along. Come on, it had to get better with time. Unfortunately, that hasn't been my experience. The time between scans seems to get better but the actual scans seem to be more sleep depriving than ever. The fear started to get worse after our surprise MRI a little over a year and a half ago and has continued to get worse. I think that is probably due to the fact that the longer we survive this monster the more I realize how lucky we are. I also know much more about the disease than I ever knew before.
Yesterday's diary entry really stimulated some great conversation about the research questions that we are asking. I actually received some pretty thoughtful insight from Dr. Seeger and Dr. Pat Reynolds. Perhaps later I will get to delve into their comments but I was ecstatic to see them participating in the conversation. It goes to show that these researchers don't operate in a vacuum. It shows that they carefully weigh each decision carefully and that they take into consideration what families feel. I am somewhat amazed but we do have a voice. We, the parents of children with neuroblastoma, have a voice and a choice in what happens to our kids and where research goes from here. The trick is to harness that power but that is a discussion for another day.
I really hesitated writing about antibodies yesterday. The last thing I want to be known as is "Antibody Boy" and I certainly don't want to be considered a Sloan puppet. We, the people who have children treated at Sloan, can be so entirely annoying that way. It is because we so strongly believe in our physicians and they are so focused and dedicated that it is easy to come across that way. We see and hear on a daily basis that it is working and we want that for all of the kiddos. The fact of the matter is that although Sloan has some great offerings they are not the only place that real science is going on. There are lots of promising treatments outside those hollowed halls. For better or worse, there is one tool that helps that also happens to reside within them and that is the 3F8 antibody. Antibody research is important but it can't be the only research question that we are asking. As I have mentioned before, although it appears to be another tool with activity and it has the potential to greatly reduce the toxicity of treatment, it isn't a silver bullet. More needs to be done and we have to figure out how to include that research with our limited budgets and patient populations.
You know, I want to stay here and write. I could literally write for days about my experiences in Los Angeles at the ANR conferences and the dialogs that have followed. However, it is now time to put my game face on.
It is scan day and, right now, that is my purpose.
5:36 AM 5/25/2006
Last night was a fairly sleepless one. I kept waking up and it felt like I was just barely breathing. Yes, scan week is just so much fun. It seems like the time that I did get to actually fall asleep I even dreamed about all of the possibilities with the CT scans. I am somewhat bothered by the fact that we did not hear anything yesterday afternoon. In fact, if history serves me, I have always remembered hearing about the CT scan really quickly. Regardless, as I have said a hundred times, I can think of hundreds of possibilities and until I get the answer my mind is going to continue to race and I will continue to feel the need to have more air in my lungs.
Yesterday was a pretty long day. Aside from the fact that we arrived about two and a half hours before the scan to start drinking the contrast it turns out that we were bumped twice for cases in the ER. Our scans were delayed for about two hours due to these emergencies. I can handle that though. It makes since and I can guarantee you that if we were in the ER and needed a CT I would not be wanted to wait around until they could find a time to schedule me in. The good thing is that it gave us some extra time to hang out with our friends up on the third floor. Sydney had a huge surprise as the first special guest was Miss Katie, a child life specialist that was a major part of Sydney's treatment. It has been quite a while since we have seen Miss Katie. Over the past year she has become a mother herself and no longer works on the oncology floor. So, in this sense, it was an extra special treat. We spent roughly an hour and a half playing in the play room and catching up with the child life crew. Over the years they have become such a special part of our lives. When times were tough they were there and I can remember their presence at every major hurdle of Sydney's treatment. We spent much of the time talking about Sydney, Graham, and Ainsley and the challenges involved in raising a gaggle of Dungans. We all had a good laugh and we just generally had a great time.
After being blessed by Miss Katie I caught Dr. Eames out of the corner of my eye as she made her way down the hall. Yep, she was stuck. Although I know she was busy she stopped in to say hello. We chatted about fifteen minutes. It was great to see her. It seems like it has been such a long time. After we had caught up a bit we discussed my trip to the ANR meeting. Dr. Granger had also gone but I don't think she had the opportunity to fill in the team as of yet. I have been trying to wrangle a prescription of Singulair out of each of Sydney's oncologists for the last few days and it seems like they had not yet been put into the loop. In fact, I am not really even in the loop. I was hoping to just stimulate some conversation. I had heard some of the clinicians talking about the successes with Singulair and they weren't talking about asthma. I hope to delve into it a bit further and see if I can figure out what exactly the methods of action are and what exactly is the science behind the excitement.
Well, I had best be off. I still have a few fingernails left to chew on. Our final scan, the MIBG, is scheduled for noon today but they have asked us to sneak in about 8:00 AM this morning because they were pretty sure that they could work us in. That way, Sydney can still make it to school today.
I still sit here terrified about the CT test results. The current thought racing through my mind is that they have found something in the lung and Dr. Eames is waiting to have it reviewed by some more specialists before she presents the information to us. I am sure the next five minutes will bring a new worry. It is a hectic and scary time.
I can't wait to breath a full breath of purpose again.
5:16 AM 5/26/2007
I can breath again. Yesterday afternoon Dr. Eames called with the great news. Sydney's scans are all clear. The MIBG came back negative and the CT came back negative except for the small density in her lung. The spot has shrunk from 3 mm to 1 mm and they still do not believe that it has the appearance of malignant disease. There isn't any consensus on what it is but everyone seems to agree that it is not cancer. The point being, Sydney has no evidence of disease and we could not be happier. With her status being such an incredible unknown these tests and scans seem to get harder and harder on us. They say time heals all wounds and so far it isn't working yet. Perhaps on her 75th birthday I sill start to breathe a little easier when it comes to scan week.
Oh, I should also point out that it is my job to worry about scans. I am still under that semi delusional state where if I am worried about disease it won't show up because, if I remember correctly, the only times she had disease was when we weren't expecting it. Oddly enough, I also drive to the hospital using a special route during scan week, I wear my Hawaiian shirt, and I absolutely must have my green hospital bracelet from when she was in the hospital. It is amazing the things you will do when you don't have the answers but are desperate to find them.
Regardless, I am ecstatic and well rested. I can breath for another month before I start to worry again. For the next two weeks every leg owie and stomach cramp are freebies. They won't send me into conniption fits and nights of restless tossing and turning. Oh, how nice it feels to be a regular, ordinary people.
This also gives me a chance to go back and reflect a bit upon the ANR conference. I have already talked about how it felt to be there and what it did to keep me busy during the first day or so but I never really got around to discussing what I found out during the clinical research and experimental therapeutics discussions. The experimental therapeutic discussions were quite interesting. This is the point that I really begin to get excited. Beyond molecular and cell biology this is where we begin to see the first activity of new agents on disease in vivo. Now sure, most of these studies are done on rats and mice but it is the first important glimpse we get to see if any of these new ideas actually work in a living organism. We get to see how it reacts with the millions of other influences that could be occurring in a living organism. This, to me, is the first real indication if a drug has promise. However, even successes in the mouse world don't always translate into successes in the human world.
There were a ton of studies on different inhibitors. Inhibitors can be thought of as stoppers or caps on connectors on the surface of neuroblastoma cells. Inhibitors keep the cells from doing something. They may inhibit them from growing, from replicating, or from attaching to other cells. In fact, whatever the cells function, they might just shut them down completely. It is a common belief that inhibitors are the future of cancer and that eventually we will just take a pill which will just automatically shut down the growth and spread of cancer. Inhibitors are a great tool to use to explain the gamut of research on how they identify a drug through the use of cell and tumor biology. You see, by looking at and studying tumor cells they identify things like surface antigens. Basically, these are things on the cell's surface that allow it to connect to or attract other cells. They then identify what types of things attach to these cells and then see if they can find an existing drug or develop a new drug which will attach to the surface antigen thereby shutting in down and "inhibiting" it from performing its function. Surprisingly researchers are pretty good at this. The problem arises that there are millions of these targets and tumor cells seem to have a way of working around whatever we shut down. They seem to have a survival instinct. Neuroblastoma also has the added complication that all neuroblastoma cells do not have the same characteristics and while some cells have certain characteristics many others did not. This also outlines the importance of seeing the results in vivo because everything can change. The chemistry of a living organism is complex.
This began to give me a picture of what was going on and how all of the prices fit together. This was just one example of a research method that was used to find a cure but there are many others. Regardless, the only thing that really matters when you get right down to it is what will save these children. There were some promising strategies. I did not see any silver bullets on the immediate horizon but there was certainly some reasons for hope coming down the pike.
Until the next time. It is time to focus on my purpose.
5/27/2006
Can you believe Ainsley was born just one short year ago? Happy Birthday baby girl!!
4:49 AM 5/30/2006
It is official. The Dungan Clan no longer has any babies. On Saturday we finally graduated our last child into toddlerhooddom. Yes, Ainsley, our youngest is officially one year old. Looking at our history you might be thinking that it is time for Lynley to be pregnant again. Let me assure you. YOU WOULD BE WRONG! I have been told that even joking about the subject is officially off limits and to be honest the thought of another child begins to make even me cringe a bit. I assure you, 3 children is plenty.
Although Ainsley officially had two parties she would be the first to tell you that being the last child was definitely the short straw. She would also tell you that although all of the grandparents flew in to attend Sydney's first birthday party she had to bribe the grandparents with calling cards to even get them to give her a jingle on her birthday. She might even point out that Graham had a Dora cake with a train toy on top of his first birthday cake while she was merely ushered a dry cupcake with a crumby hand-decorated icing "1" on the top.
Now I, on the other hand, would tell you that Ainsley had two birthday parties, one with her Mommy, Daddy, sister and brother, and another all out festival of water games and bouncy houses. All in all it was a great holiday weekend jam packed with fun, excitement, and husband servitude. I can't believe anyone would have the guts to complain. There were trips to the park, the museum, the dinosaur dig, and to the movies. There were hours of fun playing by the pool, in the bouncy house, and in the play house. And for Lynley's entertainment there were hours of Mr. Fixit's (that would be me) honey do pleasuredom.
I need a break.
Ain't purpose grand!!
5:46 AM 5/31/2006
Yesterday was actually quite an important day. It was Graham's first day of school and Sydney's first day of school in her new class. Graham actually handled it a better than I anticipated. I could tell he was nervous but he seemed to take it in stride. At the start of this day of firsts I was happy to see Sydney helping Graham. His big sister was a great big sister. She introduced him to all of her friends and then the teachers. She then took him for a tour of all of the playground explaining the purpose of each and every apparatus. It was quite cute especially considering that Graham had already played on all of the playground equipment and knew just about everybody at the school. Regardless, I was so proud to see her sheppard him around the school. One of the things that I want my children to understand is the importance of family. I want them to know and to feel that family always comes first. Oh sure. I know they will fight. But when the rubber hits the road I want them to know what is truly important in life. This was a reassuring sign.
Lynley and I left unscathed. I was secretly saddened that there was no drama as we left the playground. No tears. No shrieks of terror. Just "See ya Dad." and "Talk to you later Mom." Our kids are growing up.
It wasn't long after we left that Graham took a fall off of the bridge at the playground. He received a scrape and a pretty good lump on his head. According to the official documentation they provided some ice and kisses which seemed to speed his recovery. From what I understand, Sydney was affected by it the most. She was right by his side to nurse him back to health and was in tears when they left to take him inside. She would explain to her teacher that she needed to be with Graham to take care of him. She was his mommy when we weren't around.
Sydney tolerated her day pretty well too. Although this was a fairly significant milestone in Graham's life, it was a pretty important one for Sydney too. Yesterday Sydney officially changed classes. She is now in the kindergarten prep class and in amongst older kids. Up until this point in time Sydney had always been with kids that were 3 to 9 months her junior. We have switched her to be with kids her own age. Initially Sydney was placed in school with the younger children because of all of the time that she had spent in treatment. Although she seemed to be somewhat ahead of the kids intellectually she was lacking in social experience. Everybody thought, us included, that this younger group would be more appropriate. At the time, the class was smaller and it just seemed that it would be a better fit.
In the long run it turns out that Sydney has been quite the social butterfly and has fit right in to the new classroom. She already knew most of the kids and was ecstatic to be in the room with another Sydney. All in all it was a great day and I am hopeful that today will go as well.
My purpii are growing up.
5:12 AM 6/1/2006
Allie has earned her wings. It was only a few weeks ago that, as Sydney and I left New York, Allie's parents were told the news that no parent should ever have to hear. On May 30th at 8:15 PM she became an angel. I have often heard from parents who have lost their child to neuroblastoma that although they are heart broken beyond words there is a sense of relief. They are relieved that there sweet child is no longer in pain and they are relieved because, all at once, the fear is gone. There is no more fear of neuroblastoma. There is no more waking up in the night with terrors. No sleeplessness due to scan results. There is nothing more that this disease can do to torture them with. The fear is gone. I suppose it is one comforting fact that they will never have to live another day in this world again. I hope Keri and Brian (Allie's parents) can find this sense of relief. I pray for God to grant them this comfort and provide them strength in the days, weeks, months, and years to come.
As for Allie, there is no doubt in my mind that she has found her way to heaven. In fact, I am quite sure that she has gotten them all whipped into shape. On her website at http://www.allieandfriends.org there is a picture of her with the biggest smile in the world and I am quite sure that she is wearing it right now as she looks over all of us. Somehow I can feel her happiness. I will remember Allie for as long as I live.
I don't really know why God decides to take these children. I know he has a plan that I can not even begin to make sense of. I know there is some master scheme. I just wish I was in on it. As much as I hate to see the children go and as senseless as it seems, I know they are finally okay. It is their parents and family that are left behind that rips my heart to shreds. I can do nothing but hope and pray for the relief of their suffering. I hope to never really know what they are feeling and I make no assumptions that I can even comprehend. I can only sense what they might be feeling from the times that I have traveled to the edge of that reality.
In fact, right now, I can't even fathom it. As hard as I try I can't comprehend what they are feeling. It frustrates me because I want to reach out. I want to comfort them but I just don't know what to say because I have never been there. There is no rulebook and there is nothing I can do. And yet, I have a hazy memory of this horror. From the first weeks after Sydney was diagnosed and those first few days after her funky scan results I can remember what I felt. I just can't feel it anymore. My mind and body won't go there. For me there was too much pain and although I can recall it my body refuses to relive it.
When you get right down to it it doesn't really matter what I can or can not feel. Allie is gone and I am quite sure that heaven is a better place with her but I knew that the world was a better place with her in it as well. She absolutely lit up the lives of the people that she met. She was such an amazing little girl and I am somehow comforted by her, even now. I just hope her parents can feel it as well
I know from experience that little boys are made of snails and puppy dog tails and girls are made of sugar and spice and everything nice.
But what you may not know is that it is little angels like this that make purpose.
5:13 AM 7/2/2006
Good Morning! Well, I guess it is as good of a time as any to catch up on what has transpired at school this week. The kids have continued to do splendidly. Both have gotten pretty good reviews all week. I have been blown away. Sydney has made the transition into the older class without even the slightest of hiccups. For her it appears to be a nonissue. I really love her new class. They seem to be doing some incredible work. I am mesmerized by the stack of papers that I take home everyday. They seem to be writing and counting and measuring everything in sight. When I arrived yesterday afternoon Sydney was even working on the computer with her teacher. Although I am beginning to fear a twerp revolt that is secretly conspiring to take over the world I am absolutely amazed by the things that they are learning. The teacher seems to be doing some really good things. I haven't quite figured her out yet. I don't get the impression that she particularly cares for me. With everyone else she seems to be open and carrying on a conversation but with me I only seem to get "yes" or "no" answers. Of course, I am probably not the favorite parent to have around. I am always Mr. Questions - "How did Sydney do today?", "Did she take a nap?", Did she listen?", "Is there anything we can do at home to help?" Boy, now that I read that, I am kind of annoying. Regardless, that is me and I want to be a part of my kiddos education. I want to be involved.
Graham, too, seems to be doing well at school. At home, however, it is another story. I think school is just plumb wearing him out. I have actually been quite surprised at the ease of his transition to school life. I was expecting far more fireworks. There were a few tears shed yesterday as I left but Sydney stayed with him and it was only a few minutes before he had made a complete recovery. It was actually pretty funny. Sydney's class was out on the playground but Graham's was still inside with Miss Debbie. The was the first time that all of the classes weren't playing together. This meant that they would have to be separated and Graham did not like it one bit. I placed his backpack in his cubby and then tried to get him interested in some of the toys around the room. He latched onto a pillow in the corner and began to cry. He knew I was about to leave. One of the teachers made their way over to comfort him and I said my goodbyes. I have found that doing this quickly was the easiest on all involved. I kissed his forehead and made my way for the door. As soon as I got there Sydney turned and told me that she thought she needed to stay to take care of him. I asked the Miss Debbie and she said that they were getting ready to go outside and that would be just fine. Once again I was glad, surprised, but glad to see them be so loving towards one another.
Ainsley has been doing great as well. She just had her one year check up and received Dr. Debbie's seal of approval. She is now 20 pounds and 29 and 3/4 inches tall which makes her just above the fiftieth percentile in height and just below the fiftieth percentile in weight. She knows five words. She can properly use the words juice, dog, kitty, mommy, and daddy. Unfortunately they seem to be prioritized in that order as well. Ainsley also seems to be enjoying spending her days as the only child at home. I have this belief that she thinks that she always deserved to be an only child. Regardless, I think she has Martha right where she wants her.
Well I had best be off. There is a busy day ahead and a weekend full of purpose.
3:49 AM 6/5/2006
We survived another weekend. I say survived because it seemed so absolutely jam packed. It was not that we necessarily accomplished anything out of the ordinary. We just stayed busy with normalcy of life. It is hard to believe that we used to juggle all of this along with frequent hospitalizations. You know I was just sitting here and all of a sudden it hit me. I feel like we had such a busy weekend and then I remember what life was like not so long ago. This is nothing. So, given that, I officially take back the statement that this was a busy weekend. Of course, then, why do I feel so fricken tired. Well, none the less, it was a good weekend.
Saturday was spent completing all of the chores that so desperately needed to be done. We went grocery shopping and clothes shopping, cleaned the house, and spent all the time in between watching and entertaining the kids. Sunday wasn't a bit slower but was filled with kiddo activities. After breakfast Lynley took the kiddos to the duck pond where they spent over an hour traipsing through the park. When they got back I spent the remainder of the morning hours chasing them back and forth from the kiddy pool to the regular pool. By lunch time we had them plumb worn out which is a shining achievement when it comes to an almost five year old and a two year old. It is not very often that we can say we wore the children out, especially when we ourselves were not begging for mercy. Ainsley, who is still enjoying the fact that she believes she is an only child, spent her time inside with Mom. Sydney and I spent the majority of her awake hours in the afternoon making home made ice cream and preparing dinner but Lynley and I did get a chance to sneak out to do some important birthday shopping for you know who. Yep, tomorrow will be Sydney's fifth birthday.
Well, I had best be off. There is a mountain of work to be done and I don't think there will be any rest from our weekend.
My purpii are keeping me in overdrive.
6:06 AM 6/06/2006
Happy Birthday Sydney! Can you believe Sydney is 5 years old today? My big girl is growing up!
This is going to be a short update. Outside of the fact that Sydney has officially put another year under her belt I have come down with something. Last night I had a fever of 101. This morning at least seems to be a bit better. I no longer have the chills or flashes of heat. Someone is looking down on me because I have a mountain of work to do today. On top of that I have some serious toy building ahead of me and I am sure I will have to be prepared for an extravaganza this evening. Regardless, I am sucking it up and getting ready to face the day.
I am happy to report that all of the kiddos seem to be healthy and fine. Graham and Sydney both went to school yesterday and from the sounds in the bedroom across the hall last night they seemed no worse for wear. Ainsley seems to be enjoying her delusional state of single child syndrome. She spends most of the day at home with Martha and has decided that she likes being an only child. I think she believes that her brother and sister are for entertainment purposes only. She is quite full of herself.
Well I have got to run.
I have got some serious purpose ahead of me today.
5:34 AM 6/7/2006
Sydney seemed to have a great day. It was normal in a way that seemed so almost completely foreign. I say that because I have discovered that I don't like ordinary average days - even ordinary average special days. I was watching "House" last night on television. The story featured a little girl with cancer. House, the main character, was complaining about the bravery of "cancer kids" and how he was tired of hearing how brave and courageous they were. He even went as far as to claim that bravery was a physical symptom of the actual medical condition that this child had. In the end he came to appreciate the perspective of this little girl and surprisingly, given as close to home as this was, I enjoyed the episode. Ironically in the story this child had been treated at Sloan. What the show did for me was to make me think.
There is something about the human condition that when faced with possibility of death incredible transformations occur. In these situations we immediately focus on what is imminently important. Gone are the day to day frustrations and the minute to minute minutia which seems to hoard all of our waking hours. It no longer matters whether the laundry is done, whether the house is clean, or whether the end of week report is done at work. What does matter is life and the importance of it.
Another things that seems to change is what I call church syndrome. Church syndrome is what I call people who lie, cheat, and steal all week long only to go to church on Sunday and act like nothing has happened at all. These are the type of people who are cheating on their wives, screwing their business partners, and lying to their clients only to act like they are the most religious on Sunday. THe funny thing is that for 1 hour they actually do seem to change. They do because the have fear and they are searching for forgiveness. Well, for better or worse, this is a similar reaction of many who are faced with the moniker of death. All of a sudden you get religion. You need something to grasp onto and you need an answer to the question "Why?" At this point you barter and beg for mercy. You become overly aware of your actions and decisions in life and you make a concerted effort to be a better person.
I think another critical ingredient to describing the cancer experience is the innocence of a child. Perhaps we as adults are just looking for it in these situations. The honesty and pure emotion of a child just seems so overwhelming and true that it affects you. It is so simple and so clear that it hits you with a breath of fresh air. This coupled with the fact that you want to comfort them you begin to surround them with goodness and positive energy. It is becomes an endless circle of goodness. The child feeds off of the positive emotion of the parent and the parent, looking for a sign, feeds off of the emotion of the child.
It is not only these three things. I think there are more. But they all contribute to this condition of the "cancer kid" and their family. It is the changing of priorities. It is the focus on purity and goodness. It is the honesty and sweet innocence of the child. It is this combination that completely changes life and brings about the realization of purpose and what is important in life. The focus is on family and the child were it should be and for the first time (perhaps ever) priorities in life are put in order. Love, appreciation, and kindness seem to become the drivers in life and the feeling is almost completely overwhelming because it is these emotions, along with hope, that help us get through this journey.
I think this is why "cancer kids" are different. The are surround by love and comfort. Priorities are placed on them instead of at work or on chores or on something else. Goodness is the norm of the day because of the realization that tomorrow might not come and we best make every moment a special one.
Which gets me back to my point. Yesterday was a good birthday. It was ordinary and average. I was happy for her and I made sure I purchased good birthday presents. I even spent most of my morning building one of them. We did everything we were supposed to do. But, something was missing and it wasn't until I watched "House" that I remembered. It is easy to get sucked back into life. It is easy to just slip back in to ordinary, average. As powerful as this journey has been it is sometimes forgotten and it is unfortunate. For all of the bad that cancer is it sure brought some great life altering realizations. I know what is important in life and I need to remember to appreciate it. We are not ordinary average. We are parents of "cancer kids."
What an incredible privilege!
What a purpose!
5:23 AM 6/8/2006
Okay yes, it is a privilege, but sometimes it is also a pain in the rear. As we continue to battle bedtime it can definitely be the latter. This is not a new subject. I have written about it before and, in fact, I received some great advice. Unfortunately, nothing has seemed to work. The problem is: My kids won't go to sleep at night. Now, there are some solutions. We have tried separating them. We have put Sydney in another room. The problem is that when Sydney is in Ainsley's room Ainsley gets the screams. I am sure we could leave her there for a few days and it would eventually settle down but we were trying to correct the situation with the least amount of disruption to everyone else. The fact of the matter is that Graham and Sydney love sharing a room together. We were hoping to just shock them into submission.
I am not trying to be unreasonable here. I don't mind if they sit in their beds and talk a bit before going to sleep. What I am trying to avoid is the immediate pitter patter of twerp feet as soon as I close the door. You see, the pitter patter is always followed by laughter and jumping on the beds and a slew of other dangerous activities followed by tears and late nights. We have tried depriving them of their favorite things but that simply doesn't work. So, last night, I succumbed to the deep end. I made Sydney a bedroom in our bathroom. After being strict from the beginning, the kids would immediately disobey me from the minute I closed the door. So, after going in there just one more time, I scooped Sydney up in one arm, the mattress from Grahams old crib in the other, and delivered her to our bathroom.
I wasn't unfair. I got her sheets and a blanket. I laid the mattress down. I made the bed and then I stuck her in it and closed the door. She was mortified and Graham was too. There were screams shuddering through our house and they were loud enough to wake the dead. Lynley and I just felt guilty and a little uneasy that we had just put our daughter to bed in our bathroom. We had visions of calls to CPS when it came out that we had put our daughter to bed in our bathroom. Parents used to get away with spankings (which we don't do) but nowadays it is considered child abuse if you don't provide them with five star amenities and maid service. We were pleased with what was transpiring but a little uneasy of our methods. We weren't after long term psychiatric damage here. We were just trying to get her to go to bed at bedtime.
Sydney eventually calmed down but we could still hear tears from under the door. It had lasted about fifteen minutes. So here we sat, two and a half hours after their bedtime. In the morning I had just written a diary entry about how privileged I was to have my daughter and there I was in my bed, her brother was still screaming from the other room, and my daughter was in her new bedroom - my bathroom. Where did I go wrong?
Regardless, I eventually went back to the bathroom door. I explained to Sydney that this would be where she slept if she continued to play at night. Although I would never do it on a permanent basis I am pretty sure that she thinks that I just might. She swore up and down that she understood and that she would not disobey us before bedtime anymore. I don't know whether I believe her but I do hope that the memory stays with her longer than last night.
If we have to we will change up everyone's' sleeping arrangements. The problem is that we really want Graham and Sydney to share a room but it is becoming more and more of a reality that it just won't be possible.
Parenting is hard.
So is keeping the sanity.
I still love my purpose though.
5:56 AM 6/9/2006
I thought that I would surely understand the mind of a five year old better than I understood the mind of a four year old but I am starting to figure out that kids are just as incomprehensible as women. Yesterday afternoon started off well enough. Sydney and Graham had a great day at school. I loaded them up and ushered them over to Home Depot where we purchased three room darkening shades for the windows in their room. I figured that if they only went to sleep when it was dark outside I was going to make there room darker - earlier.
When we got home we played a little and waited for Mommy to get home. Then, I made my way upstairs and installed the room darkening shades. A little later Chance and Preston came over to play in the pool and eat dinner. We all had a really good time and wore out the kids appropriately. By about 7:30 PM we had completely tired out the gaggle of rug rats and began the process of preparing them for bed.
Ainsley, as predictably as ever, drifted off to sleep almost immediately. Twerp 1 and Twerp 2, however, seemed to be more interested in the magic shades that I had draped over their windows than going to bed. I asked Sydney if I should go get her other bed ready. She knew I was serious. She promised me that she was going to be a perfectly good little girl. She said she would go straight to sleep and would not jump on her bed. Graham seemed to respond to the statement well as he climber into his bed and cuddled himself into the covers.
Boy, was I proud. They took me seriously. There wasn't fear in there eyes but they knew I was serious. Surely this response was an indication that they had succumbed to our superior, if not questionable, parenting skills. We both kissed their foreheads and made our way out the door.
Within five minutes they were clearly jumping on their beds. I wanted to act like it wasn't happening. I would just ignore it. Lynley had none of that and pointed me out the door. Sure enough as I opened their door both of them flew from mid air 3 feet over there beds into their covers. I calmly made my way over to Sydney's bed and picked her up. She said "Don't take my blanky away!" I said "I am not going to." You see, she thought she could get away with being a little bad. She figured she had a couple of chances left. I took her into our room and put her on the mattress that I had placed in the bathroom. I explained to her that she was being punished and explained to her why. I closed the door. As soon as the door hit the jam she said "I still have me blanky, ha, ha."
What? You have got to be kidding me! Did she learn nothing?
I wasn't going o be baited by a five year old. I told her good night and asked her to go to sleep. Within minutes she was jumping on the mattress in the bathroom.
I took her blanky away.
There were screams and hysterics but eventually the room fell silent. At 8:30 when I thought Graham was fast asleep I decided it was time to let Sydney out of her new bedroom. I took her back to Graham's room and she went fast to sleep.
I kept my cool. I did everything thing that I could rationally think of. I was kind but firm. I followed through with my promises. These are all things that Lynley and I try to do everyday. And yet, here we are. I just don't understand them. I love them. I just don't understand them.
Hmmm. I've heard that somewhere before.
I guess that is what makes purpose (and marriage) so incredibly interesting.
5:09 AM 6/12/2006
Good morning! It was a complete weekend. Have you ever woken up early on a Monday morning and felt full. I guess that is the way that I feel about last weekend. It is as if I had just finished dinner and could not possibly fit any more in. It all started last Friday with the arrival of Mimi and Papa. That was a huge highlight in the kiddos week. In fact, I took Papa with me to go pick up the kids from school. First, we went into the "Kitty" room to pick up Graham. I let Kip enter in front of me. I then stepped through the door. Almost immediately Graham caught me out of the corner of his eye and came running towards me. About 3 feet in front of me, he saw Papa. Without missing a beat he made a 90 degree turn and went running into Papa's arms. I think that move alone probably catapulted him straight up to the top of the will.
The next room n our stop was the "Raccoon" room where we found Sydney, her teacher, and another student building shapes on cards from blocks. They had their backs turned to us. Papa made his way over to the table as I gathered her things. In the background, you could still hear Graham reeling about Papa. With all of this ruckus Sydney turned around to see Papa and she leapt into his arms. In fact, I think Papa's back is still in recovery mode.
That was just the beginning to a jam packed weekend. On Saturday morning we visited the Stock's who were having an "Alex's Lemonade Stand" to raise money for neuroblastoma and children's cancer research. Riley and her friends were busily handing out lemonade to all comers. She was an adorable 7 year old little girl who had been diagnosed with neuroblastoma (IVs) when she was a newborn. She is now a survivor and I am so thankful for she and her families hard work. We really enjoyed meeting with them but we were constantly wrangled away as the kiddos took turns riding all of the tractors sitting out in front of Lowes. Alex Scott, the "Alex" in "Alex's Lemonade Stand" was the little girl who made so many appearances on the various talk shows before she passed away almost two years ago. She was an inspiration to many but especially to kids with neuroblastoma. She and her family have done incredible things for pediatric cancer awareness.
We followed this visit with a trip to watch "Cars." It was a good movie but I don't think it was nearly as appealing as its predecessors. Although it was witty, it was long, and many of the kiddos had trouble sitting through it.
That evening we cooked out but ate in. Sunday was filled with swimming and was capped off with a belated birthday party for Sydney. In attendance was Truman who, as usual, seemed to find every opportunity he could to sneak off with my daughter. To this day Sydney is still enamored with him. She loves it when he and Preston come over and she could not have been happier. Sydney, Graham, Truman, and Preston played the afternoon and evening away. Ainsley was just happy to be the focus of the attention by the rest of the adults. There is no doubt in my mind that she truly believes that she is an only child and that the only reason the other kids are imported into her domain is for her entertainment.
Well as much fun as last weekend was it is time to hit the grindstone. There is a mountain of purpose ahead of me.
5:43 AM 6/13/2006
We are back in the grind again. Yesterday, everyone went back to school. With two weeks under his belt Graham is really starting to get the hang of school and Sydney, well Sydney is a big girl and really doesn't need Daddy around that much anymore. She is a sophisticate and you know how goofy and dorky dads can be.
I have mentioned many times one of my greatest goals for my kids its to teach them the value of family. I hold this teaching right up there with integrity and personal honor. I want my kids to understand, realize, and feel that their family is the single most important institution in the world. I want them to know that regardless what challenges they face in life that their family will always be there to support them. Other than constant reinforcement, I really don't know how to pass this teaching on to my kids. So, I am really happy and extremely proud when I see them practice these teachings. Yesterday was no exception.
Mondays are tough on the Grahamster. He just had a weekend to get used to the idea of being at home with Mom and Dad when we threw him back in school again. Throw on top of that the fact that his favorite teacher, Miss Debbie, was not at school and you have all of the ingredients for a very tough start to the Dudester's day. As I said, he is getting better at the transition but it is clear that he is still having a tough time with it. Yesterday, they found a stray puppy running around the school. All of the kiddos were lined up sitting inside the fence as the teachers cared for the puppy on the outside of the fence. Graham and Sydney were both sitting front and center. I told Graham that I had to leave to go to work. He struggled to keep his composure. I could see the tears welling up in his eyes as he fought off a full fledged cry. I told him that I loved him and gave both he and Sydney a kiss goodbye. As I stood up Sydney grabbed Graham's hand and put his head on her shoulder. She was comforting him. As I got in the car and looked back I could see them making their way across the yard, hand in hand, to the play equipment.
All of Sydney's friends were playing and running around but there she was caring for her brother whom she knew was sad and scared. She chose family.
That is what I call purpose.
5:28 AM 6/14/2006
After answering a question on the neuroblastoma list serv this morning it occurred to me that I never really discussed some of my favorite findings from the ANR conference. I realized that I must write them down before I forget them. I have also hesitated a bit on writing about them from fear of bias. I have some very opinionated views on some of the research questions being asked and I don't want my bias to mislead. Eventually someone will read my diary and make a decision for their child based on the information that I have written and I want to make sure that the facts that I spew are actual facts and not opinion. After getting more involved in the research world I am starting to discover that opinion and fact begin to commingle and the truth can be difficult to discern. So regardless, hear we go. THIS IS MY OPINION.
There were a couple of research projects that really caught my eye during the experimental therapeutics and clinical research discussions. These were the items that really made me step back and say "Hey, that is really important research." First off, I think the most impressive research study there was by Kim Kramer from Sloan. I know, I know it seems like bias. But it isn't. I don't care who you are. You like Sloan or you don't like Sloan but you have to give credit where credit is due. Her poster presentation on their new CNS relapse protocol was astounding. It was astounding from this perspective. Most, like (99%) of, kids with CNS relapse succumb to the disease relatively quickly. In fact , in looking at the various posters it looked like the bulk of the survival bell curve was perilously perched over the 4 to 7 month period. In general, there are few responses and unfortunately most succumb relatively quickly. The Sloan protocol for CNS relapse was quite the opposite. Not only did it show that the kids were responding from treatment but it every case it showed a complete response and eventually no evidence of disease. These kids, many over a year out of CNS relapse, showed continued health and, most importantly, life. I thought (and still do) that this was incredible. No one else out there has had any results even near this and to me it was the champion of the conference. In short, if you have a CNS relapse or CNS disease get your butt to Sloan Kettering.
Sloan had 4 or 5 other presentations. I wasn't blown away by those but I was glad to see them there. They had a poster from Hong Kong confirming their 3F8 results at another institution. They showed that the heat modified ("heated" or "no pain") antibody showed promise of greatly reducing pain while greatly increasing the dose. (3F8 is dose dependant.) They had evaluable results that demonstrated (by MIBG scan and marrow results) that 3F8 antibodies alone kill disease in children. They also had a poster presentation on a low dose concoction of Temozolomide and Irinotecan that was tolerable and showed effectiveness in the relapse setting. I know there was at least one other study but I can't seem to clear the cobwebs to get it out of my mind. Regardless, I thought they were good studies and interesting but the CNS study was by far the most crucial in my mind.
I have to run again but tomorrow I will address some of the other interesting things I saw - allogenic transplants, a new Fenretinide idea, vitamin C, Vioxx, and you might discover that you want your child to develop a bad case of allergies - Sydney has!!!!
I love purpose.
5:56 AM 6/15/2006
Good morning! Here is a quick update for everyone before I get back to the nitty gritty. Everyone seems to be doing well. Yesterday Sydney's class went to Chucky Cheese for lunch and of course that was a life changing experience - a life changing experience for us because now she wants to eat every meal there. Graham went back to school after spending a day calavorting around with and riding the train down in the park with MiMi and Papa. Ainsley is just Ainsley. Happy old Ainsley. She is still confused on why she was placed in this raucous family but seems to have adjusted well now that she has rewritten history and decided to be an only child. She has decided that her brother and sister are just fine as long as they just visit. Lastly we just heard back from Sloan and they have rescheduled our next round of 3F8 to occur from July 17 - July 25, a week later that we had planned.
Okay, now where was I. Ah yes the ANR conference. Well I think I may go backwards instead of forward because I have gotten a ton of questions about Sydney's allergies. I guess you have to go back a couple of weeks to the actual conference. I really did have a blast. I was constantly bouncing around from one group of investigators to another, always with my ears open, and always looking for that one special nugget of information. After the morning plenary session I kept hearing everyone mumbling about Singulair. I could not figure out what everyone was talking about and I kept running in to the end of conversations where everyone was saying something like "Yeah, you better bet all of my kids are going to develop allergies", or "Incredible, and virtually no risk, too", or "Singulair, you have got to be kidding." The problem was that I never could get the full story. I had spent the previous day in the clinical research session instead of the experimental therapeutics session and I had just skipped the last couple of sessions to talk to a lady that was representing the English Neuroblastoma Society. Regardless, at this type of event, one that was for researchers, I did not find it my place to ask questions to things I should have already known. Their jobs were to share research with other investigators and stimulate ideas, not teach parents who were outside socializing with another foundation. So, in effect, I just kept nosing around until I could research the subject myself. To make a long story short I never found out what they were talking about and I always walked in to the end of the conversation.
When I got home. I finally had the opportunity to do my own research. I looked everywhere for a reference of neuroblastoma and Singulair and there was nothing. It was until I searched through my ANR cd that I found it:
5-Lipoxygenase and Leukotriene Receptors Are Expressed in Childhood Neuroblastoma and Inhibition of the Leukotriene Synthesis Pathway Suppresses Tumour Growth
Not exactly what you were expecting is it. Well, it is and clearly you can see what an incredibly important research paper this is from the fancy title. Obviously it has all of the answers. No? Okay. Well, fine, here is the rest of the abstract.
Baldur Sveinbjornsson, Agnes Rasmuson, Ingvild Pettersen, Frida Ponthan, Abiel Orrego, John I Johnsen, Per Kogner Childhood Cancer Research Unit, Karolinska Institutet, Stockholm, Sweden; Experimental Pathology, University of Tromso, Tromso, Norway
Eicosanoids have been shown to play important roles in promotion, survival and metastasis of tumors. Lipoxygenases (LOs) are overexpressed in certain carcinomas and leukotrienes may have important functions in the process of carcinogenesis.
In the present study we investigated NB primary tumours from different biological subsets and from all clinical stages. High expression of 5-lipoxygenase (5-LO) as well as the leukotriene receptors CysLT1 and BLT1 was detected by immunohistochemistry in a majority of the tumours (30/31) whereas no expression was detected in adrenal medullas from healthy children. RT-PCR, western blotting and FACS analysis showed expression of 5-LO, the 5-LO activating protein (FLAP) and the leukotriene receptors CysLT1 and BLT1 in all seven human NB cell lines investigated. NB cell lines synthesized both LTB4 and LTD4, as measured by ELISA, and this synthesis was increased by proinflammatory cytokines (IL-1, TNF-a). Moreover, stimulation of senescent NB cultures with LTB4 or LTD4 induced proliferation indicating an autocrine survival loop between the NB cells and their 5-LO products. This suggested that the leukotriene synthesis pathway or leukotriene receptors could be a potential therapeutic target in NB.
Treatment of NB cells in vitro with inhibitors of 5-LO (AA-861), FLAP (MK-886) and the CysLT1 leukotriene receptor (montelukast) induced cell death in a dose-dependent manner. All three inhibitors induced depolarization of the mitochondrial transmembrane potential, cleavage of caspase-9 and caspase-3 followed by apoptosis. Inhibitors of other LO isoforms were significantly less effective in inducing NB cytotoxicity.
Oral administration of montelukast to nude rats carrying human NB xenografts significantly inhibited tumour growth (p<0.05) without overt toxicity, whereas untreated xenografts grew exponentially.
We conclude that 5-LO and leukotriene receptors are present in NB tumours and that functional inhibition of these proteins induces apoptosis and suppresses NB growth. These findings provide a novel therapeutic potential in childhood neuroblastoma.
Well, there you have it. Clear as mud. At this point I was really wishing I had sat through this oral presentation. Luckily, from my research about Singulair I knew that Singulair was actually Montelukast.Sodium. This was what they were talking about. and the third to the last sentence is the important one. "Oral administration of montelukast to nude rats carrying human NB xenografts significantly inhibited tumour growth (p<0.05) without overt toxicity, whereas untreated xenografts grew exponentially."
You know, we are always looking for the next new thing and this could very well be it. I don't know that I would run out and start treating my child with Singulair but if she had allergies - well - I certainly might think about using Singulair as opposed to another product. And so, there you have it. This was one of those neat discoveries, one of those findings that make you really think. Could this be it. Could something as simple as benign ol' Singulair really make a difference? Well, the fact of the matter is that I don't have any dosing information. All I know for sure is that it is dose dependent. From what I hear though, it doesn't seem like we need a whole lot. Now I am sure that we have had kids on Singulair that have relapsed, but maybe not. Regardless, this is the type of question that we need to be asking right now. Singulair is already given to kids. We are bound to have the dose escalation studies ,etc. This is the type of agent we need in a trial for kids in first remission.
Now, I am not advocating giving your child Singulair. This is one little study from Sweden done on rats. But it does have to make you think. You have to wonder. It is a ray of hope. There is potential. There will need to be more studies done.
So anyway, Lynley and I have this theory that all of these sinus and eventual ear infections are actually a result of allergies. She has all of the symptoms. She is sneezy and she has a runny nose. Some days her eyes are even itchy and puffy. What do you think? Should we put her on Claritin or Singulair? Hmm.
Sometimes you have to steer your purpose in the right direction..
5:31 AM 5/16/2006
Today will be a special day. This morning Sydney will be going to spend some alone time with Mimi and Papa. She will be skipping school and instead she will be out and about. This presents a problem for poor Graham who will have to face the day without his sissy. It will be a struggle for him. Luckily they are celebrating Father's Day at school and he and I get to have breakfast together. This is also splash day for his class so, hopefully, that will keep his mind occupied. Unfortunately it will be another typical day for Ainsley. To hear her tell it, she will be served her ration of bread and water and be left to molt at home. She certainly has a colorful way of seeing things doesn't she? It sure is tough being the third child.
Yesterday I was finalizing everything regarding our upcoming trip to Sloan and in the meantime we were bumped. We will now be up there for treatment between July 17th and the 28th. This is two full weeks after our originally scheduled treatment cycle. Apparently, they were fully booked with 3F8ers so we will get the opportunity to meet a whole new batch of kiddos and families. I will have to remember today to call and make sure we are on the books at the Ronald.
Now back to the ANR. One of the other clinical discoveries that also intrigued me was basically just the revisiting of an old idea. The only difference was that quite a few were doing it. This was the whole theory of an allogenic (donor) transplant instead of, or in combination with an autologous (self) transplant. There are a lot of theories on why an allogenic transplant could be better but nothing has ever really been proven and truth be known most of these ideas had been tried before with limited success. In fact, there was a major study by the COG that showed that it had no impact on survival. Now, transplants are not really my area of expertise. I know a lot more about other aspects of treatment than I do when it comes to allogenic transplants. None the less, here are a few laymen's reasons that an allogenic transplant may in fact be better.
From the allogeneically transplanted immune systems standpoint it is not bone marrow being transplanted, it is the body being transplanted. Everything in and including the body is seen as foreign. This sets up immune reactions to every tissue. This is called graft versus host disease or GVHD. Skin, lungs and eyes are major sites of disease but any area can be a problem. The nice thing about this is that neuroblastoma cells are foreign and can be recognized by the immune system and killed in these patients in whom it had previously evaded the immune system. This is called Graft versus Tumor effect, or GVT for short.
This strategy has been proven to be effective in treatment of certain kinds of tumors such as certain leukemias. All this sound great but it is no cake walk. Allogenic transplant makes autologous transplant look easy. Chronic lifelong treatments are necessary to control GVHD which may include immune suppressive therapy and regular photophoresis sessions. Allogenic transplant would not be my first choice but still this may be a good backup plan.
Another theory on why allogenic transplants may be better is the fear that autologous transplants are actually reinjecting the neuroblastoma cells into the body at transplant. No one ever knowingly transplants marrow back that is contaminated with neuroblastoma but our tests for disease are only so sensitive. Are some cells sneaking by? Is this the reason for relapse? No one wants to believe that this is the case but no one really knows for sure. This is the reason why they have just completed A3793 (the trial Sydney was on) which was designed to answer the purged marrow, non-purged marrow question. With an allogenic transplant this would not be the case. Since the donor would not have neuroblastoma you would theoretically not be at risk of receiving neuroblastoma cells back.
Another theory is that with new bone marrow you will develop the immune system of the donor. Hypothetically, if neuroblastoma survives in a child because the immune system is not capable of dealing with the disease due to some genetic anomaly then perhaps the person who donated the marrow does not have this anomaly. By receiving their marrow and parts of their immune system you are receiving their ability to deal with neuroblastoma. I really think that this last theory is a long shot. I see many holes in the idea but none the less it is a theory that I have seen batted around.
So there you have it, a bunch of reasons why allo transplants could be better. The fact of the matter remains. Historical research has shown that it provides no benefit and further molecular studies have shown that neuroblastic tumors do not have the same elements as tumor cells from other cancers that have benefited from allo transplants. In other words the reasons that allogenic transplants appear to work in other cancers do not appear in neuroblastoma.
So, why was I excited? Well, like I said, I saw some fairly interesting twists on the old allo transplant that seemed to have some pretty amazing results. The main study, Dr. Yamashiro's, featured an autologous transplant followed by and allogenic mini transplant. Although the study only included 6 subjects (that is kiddos in my lingo) all were stage 4, 4 of 6 where n-myc amplified, and all were well out of transplant and doing well and you just don't see that very often with n-myc amplified kiddos. You will also note that places like St Jude's who have been in the news lately for some of their advances in neuroblastoma research are beginning to favor the allogenic transplant. There were more but I do have to run.
Have a great weekend. A full week of purpose lies ahead.
5:51 AM 6/19/2006
What an incredible weekend! On Saturday Mimi and Papa left to go back home. Of course, that was not the incredible part. Sydney, Graham, and Ainsley were all very sad to see them go. They are now at the age were they are really starting to appreciate their grandparents. They love having them around. Graham still hasn't figured out that they had left and as he takes inventory of the family each night before we go to bed he still asking where Mimi and Papa are. I think he expects them to live with us. I love you but don't get any ideas Marge.
Sunday was the real special Day. Ainsley, however, would have something else to say. We made breakfast at home. It was quite the feast on good ol' Dad's day. We had an incredible spread of eggs, bacon, sausages, and english muffins. It was a true manly breakfast. There were no quiches or fruit salads here. It was quite the tribute to my day. After breakfast we dropped Ainsley at DeeDee's for her morning nap. We were going to do something special with the kiddos while she slept. I kept our destination hush, hush until the last minute. Lynley and I took Sydney and Graham to Six Flags for a morning full of fun.
This was the first time that Lynley and I had been there since about the time that we started dating so we were as mesmerized by all of the festivities as the kids were. As soon as we entered we saw Pepe Lepiew and Daffy Duck and it was not too long before we were making our way through loonytoon land. Sydney and Graham had a great time in the junior tea cups (dynamite barrels from Wyle E. Coyote), the carousel, the flying airplanes, and the roller coaster. We then made our way to some of the family rides. Although they were both anxious to go on the new Superman ride or anything with 4 or more loops we decided to take them on some of the more benign rides. We ended up going to splash mountain. Graham was exactly at the minimum height of 36" for most of the rides so it worked out perfectly. He was so close to not being able to go on the rides that I think had we been there earlier in the morning he surely would not have qualified. Regardless, we loaded them up for their first adult amusement park ride in history. AS our boat sloshed its way up the hill and then gently around the loop I was watching Grahams eyes. There was a glimmer in there that I had not seen before. He was having an incredible time. But, as we rounded the last turn just before we went off the cliff and he we spotted what was going to happen, he experienced both sheer terror and sheer joy as we went splashing down the mountain. I think I just witnessed his first dose of pure adrenalin. Both kids did not want to leave the boat and we had to promise them that we would do it again to even get them to budge. We were all a little wet but it was nothing like what was getting ready to come at the raging rapids.
We continued our way around the park as we looked for the train station. As we had stood in line at the splash mountain we had spotted the train come by and Grahams eyes absolutely lit up. We also knew that it might be Lynley and I's only opportunity for a little rest. As we walked around Sydney was barking constantly about doing another water ride. She was beside herself with joy and was stirring up her brother. Luckily about the same time we say the Raging Rapids ride. Now the Raging Rapids ride is just about exactly what you would expect. 10 people fit onto a huge raft and going riding along a simulated rapid course. Unfortunately, Lynley and I missed the sign that said - "You will get very wet, possibly soaked." but, hey, the kids were excited. To say we got wet would be an understatement. It seamed like every splash and rapid sent with it a huge wave over our bodies. In the end, I think we would have remained dryer had we just jumped in and swam. Although we were soaked through and through the kiddos demanded that we do it again and in the spirit of the day we gladly put ourselves, dripping wet, right back in line. After another go at it we slowly made our way back around the park to the entrance. We stripped the kiddos down and put them back in their car seats. We went by DeeDee's to pick up Ainsley and made our way home.
In the afternoon the kids would take a nap and then we would have a nice family evening and dinner together as we watched our dear old Phil Mickelson throw away the US Open. All in all, it could not have been a better day.
Thank you for giving me the privilege to celebrate father's day. That is what purpose is all about.
5:39 AM 6/20/2005
Good Morning! All is well back at the Dungan household. Mondays always seem like good days for catching up and scheduling all of the necessary appointments. Most of my communication yesterday was back and forth from Sloan, Cook's, and Dr. Debbie. It was Dr. Debbie's first day back after a two week vacation to Italy. I bet I am her favorite father to deal with. One of the problems with having treatment at another facility is that there is now one other hand in Sydney's care. From a care standpoint and from a saving Sydney's life standpoint it is a great thing but from a routine maintenance standpoint and from a communication and paperwork standpoint it is a nightmare for everyone. I think the biggest problem is that no one wants to mess up what the other is trying to accomplish. Decisions that were made in a vacuum by one physician now have an effect on the other physician's and all decisions have important implications for the child. In this case Sydney. I am happy to say that they are especially conscious of this. The problem is that, when no one takes control, Sydney is left in limbo. Everyone seems to think someone else is in charge of her care. It becomes our responsibility to make sure things happen when they are supposed to and that everyone knows what is going on.
I don't want to give the wrong impression. I am not angry. It is important however, that we remember where we are in treatment and what needs to be done. I think this is an important lesson for everyone that makes the decision to have some aspect of their treatment completed at another institution. When this happens there seems to be a lack of ownership and it is an added responsibility of the parent. When you are first diagnosed the rules seemed pretty clear. Dr. Eames came in and declared that she was in charge. She said, "I will be primarily responsible for Sydney's care for the next 18 months." This was nice. We knew exactly who was in charge. We learned to depend on her to tell us what to do. She told us when scans would be and when and what drugs she would receive. If there was a question or Sydney needed care there was one place to go - Dr. Eames.
Since then, things have changed. It changed mostly after we went to New York. That is not to say anything negative about Dr. Eames or her feelings about Sloan. After all, it was her idea. But, when we started going to New York, all of a sudden, no one was in charge. Everyone expected someone else to be in charge of her care and ultimately, with no takers, that responsibility has fallen upon us. We are responsible for deciding when Sydney's scans are. We are responsible for deciding when and what questions to ask regarding vaccinations and other medications. No one is telling us what to do any longer. Ultimately, I think Sydney's care is probably under Sloan's control but I don't really know for sure. For now, I just continue to ask enough questions and I ask them of everyone.
Normally you may think that would be a good thing - but is it? Should we be qualified to know these things? There is definitely a disconnect somewhere and at times I yearn for the feeling of being coddled by Dr. Eames. She told us when, what, and where and it was always so assuring. Sure, I know a lot about neuroblastoma. I know a ton about the various treatment options and requirements. I can surely make some informed decisions. But, overall, a I am not qualified to be anything but the messenger. It is my job to keep everyone on the same page.
In the meantime, I am scheduling vaccinations for Sydney because I think she needs them. Everyone is now on the same page and Sloan has sent us a revaccination plan to get started. I have also gotten everyone to agree on treatment for Sydney's "allergy" problem and I imagine she will be starting on Singulair sometime this week.
I don't know the answers but I do have the purpose.
5:44 AM 6/21/2005
Graham is at one of my very favorite stages of life. Being almost two and a half years old your existence is pretty carefree. Even when Sydney was at this age and in the midst of treatment there was something that was just so incredibly relaxing about this age. At this age Mom, Dad and family are still the centers of their world and their entire lives seem to be geared towards entertainment. I have memories of playing with Sydney in the hospital at about this same time in her life. It did not matter how many tubes were in her or how bald she was. She was happy just to be with her family and giggling with her Daddy. Everything else seemed to just fall away. It is contagious because after a few minutes of playing with Graham all of my worries and frustrations seem to fade away. For a minute, I just get to sit under a rainbow. Right now, I can't look at Graham without having a little smile.
One of my favorite times of the day right now is whenever Graham wakes up from sleeping. Generally he wakes up in a good mood. As soon as I hear him I always drop whatever I am doing to go see him. When I walk in the room he can't be seen. Like clockwork, I can expect to see a large lump of sheets in the middle of the bed. It isn't hard to tell that my son is sitting straight up underneath his covers. You can't find him right away and even after you pretend to search the entire room for him he doesn't want to be found. If you try and lift the blanket from over his head you will hear a "No! Hiding!" This is usually followed by tickles as I tickle him through the blanket. "No, Daddy. Hiding!" which is always followed by thick belly laughs. If I stop tickling him and act like I cant find him I will here a "Daaaaadddddddy? Hiding!" and I know that this is my queue that he wants more. We could easily play this game for 30 minutes every time that he wakes up. It is so cute and so funny and it prepares my day. No matter how stressed out I am about what is coming at work and no matter how many chores need to be done before we get the kids out the door, it all just melts away. What a great way to start a day and what a great way to start life.
I am always learning from my purpii.
5:32 AM 6/22/2005
Yesterday I did not even look at the date. That is really surprising to me. It was the three year anniversary of Sydney's diagnosis. Had I noticed it I probably would have spent the day in contemplative thought. Much of it I can remember like it was yesterday. I can still remember our first walk through the oncology unit. I remember the smell. Everything seemed to be operating in slow motion. It was late in the evening, perhaps 10:00PM, and yet I the site of several little round bald heads are etched in my memory. It was sitting in room 3009 that night that we met Dr. Eames for the first time and began the journey down the road of neuroblastoma.
It has been a long road. Yesterday was a day that I had always hoped for but never really knew that it would come. Three years is quite a milestone. Looking back I don't think I ever expected to be or feel normal again. On that day the Mark that I was left. I am a different man in so many ways and yet, I am still happy, perhaps happier than I ever could have been. In the last three years I have lived my life. There is no doubt that has changed my priorities and my perspective. I am far more appreciative of every moment than I ever could have imagined being. That is easy for people to say but without living through a tragic experience such as childhood cancer I don't think there is anyway to truly appreciate the concept.
I still absolutely hate that my daughter has neuroblastoma. I live in fear of it everyday. I still wake in the middle of the night with my heart pounding and gasping for air. I doubt there will be another day in my life that I don't feel that way. Well, that is not true. The day that we cure neuroblastoma that feeling will go away. The day that Sydney can walk out of that clinic without ever having to go back. When that happens, I will no longer feel this fear. I would say that this is the major hurdle, at least for me, from living a normal life. But, it isn't all bad. It is this fear that keeps me motivated and keeps me appreciating all of the things that I do have. It has forced me to live my life for fear of losing it. I have enjoyed moments that I never would have. Most importantly, I am my kiddos father and my wife's husband.
After all, it was neuroblastoma that made me realize that I had purpose.
Until the next time...
5:28 AM 6/23/2006
Good Morning! Today will be a pretty jam packed day and this is definitely the calm before the storm. I am working on four projects at once and everyone is clamoring to have theirs delivered first. Unfortunately, none of them are up to my standards of delivery so everyone just gets to wait. I am generally pretty good with deadlines. If I set a date that I need to hit we will always hit it. The problem is when a deadline isn't set and everyone's expectations dictate, for them, when they think it should be due. It becomes a real problem when everybody expects it to be due right now. That is unfortunately where I am right now. The good news is that I have learned what is important in my life and although work might feel like high stress I won't let it control me. I am going to go to work, I am going to work as hard and as fast as I can, and then I am going to come home, forget about all of it, and spend time with my family. I will just keep chipping away at them but they won't get the opportunity to chip away at me.
The exciting part of today is that Lynley and I are getting to meet with Dr. Granger who is investigating the idea of starting a neuroblastoma program at Cook's. I think it would be great for the area and depending on their goals and aspirations it could also be very meaningful for neuroblastoma. Although Texas is represented very well in the neuroblastoma world by Dr. Heidi Russell down at Texas Children's in Houston, I think it is important to have some representation in North Texas as well, especially within the metroplex. In fact, their are some pediatric oncologists here in North Texas with such horrid reputations for their methods in treating neuroblastoma that some have even tried to have their medical licenses revoked. We have a pretty dense population here in North Texas and we probably have the numbers to answer some fairly important research questions we could certainly support a program. On top of that we need a facility with the experience, expertise, and the tools to fight this disease adequately without having to travel across the country or the state. We have been lucky at Cook's. They have always been willing to look outside of the box. The have the size, the reputation, and the talent. In fact, with Sydney, they have always pushed the envelope. It is because of Cook's that Sydney has survived. All they need is someone who is willing to focus their time and their energy on neuroblastoma and it looks like they may have it in Dr. Granger. It should be a fun and interesting meeting.
Well I had best be off. Graham has Splash Day at school today and then we will have a nice relaxing family weekend ahead of us. Hopefully I will get the opportunity to share some kiddo stories next week.
Purpose is always there you just have to find it.
5:21 AM 6/26/2006
I feel like I could sleep another night away. We had a great weekend. This was the first weekend in as long as I can remember when we did not have something planned or an activity to attend. It was just the five of us home alone together. We spent most of the weekend in the pool. Our water is finally warm enough and we took advantage of it. Both Graham and Sydney have special bathing suits with air bladders built in them. Although they can't swim completely on their own they can get around pretty well. We have slowly let out the air in Sydney's swimsuit and she is about to be at the point that she has no air in her suit. However she does not seem to be aware of it. There is apparently an important mental ingredient to swimming on your own. It is the belief that you can actually swim. You see, just about everyday before we swim I let out a little bit of air from Sydney's suit. I never let Sydney see that I do this and as long as I do it slowly she never seems to notice. She just appears to swim a little harder for the first 10 minutes and then everything is back to normal. Now, if I forget to take air out of her suit and decide to do it while she is wearing it or where she can see me actually do it, it is quite a different story. I made this mistake this weekend.
We were swimming along and it occurred to me that I hadn't let any air out of her suit in a few days. She was swimming really well and there was barely any air left in them anyway so I decided to let a little air out. I sat her on the stairs. I unzipped the hidden pockets on her bathing suit and pulled the air bladders out. Sydney was aware of what I was doing and wasn't the least bit happy about it. I let a tiny bit of air out - a wisp of air would be an accurate description. I probably could have counted the air molecules I let out on my hands. Sydney was extremely worried about it. She was absolutely positively sure I had let too much air out of them. There was no doubt in her mind that she would fail to float anymore. I had let too much air out of it and she could not possibly swim. I disregarded her alarm, simply put them back in her suit, zipped her back up, and assured her that everything would be fine.
Sydney slowly got off the stairs. Sure enough, she sank right to the bottom. She flailed a little bit but was no where near swimming. Luckily, she could still reach the bottom of the pool so she knew she could stand up. She was madly moving her arms and legs but I don't know if you could actually call it swimming. She was trying to do something but I just could not tell what it was. After watching her flail around, sink to the bottom, and complain for a few minutes I finally succumbed to her wishes and decided to test my theory. I sat her back down onto the stairs and explained to her that I would only put in as much air as I took out and not a breath more. I made a really big deal out of the fact that I was only going to put in as much air as I took out. I unzipped her bathing suit and took the air bladders back out again. This time instead of taking out the plug in the air valve I just acted like I was blowing it up. I was very dramatic and acting like I was trying really hard to get the exact amount of air back in each of the bladders. I would blow on one and then have her feel it and then blow on it again and have her feel it again. After a few minutes I had her happy that we had blown them up to the perfect point. Keep in mind that I never blew them up. I never put a single molecule of air back into the bladder. None the less, I put them back in her suit and zipped it back up. Sue enough, off she went, swimming across the pool. It did not even phase her. I, on the other hand, was completely amazed by the mental portion of swimming. I had always assumed it was just coordination and muscle memory but apparently it is about 99 percent mental. Sydney absolutely could not swim when she did not think she could. The funny thing is that there is so little air left in those little air bladders. I wonder if it actually has more flotational power than a leaf. In the end, it really doesn't matter because it seems to her that it has all the flotational power in the world.
I think purpose works the same way for me. As long as I believe that I have purpose it seems that I have power.
5:17 AM 5/27/2006
37 billion dollars? Did I hear myself correctly. Warren Buffet is giving away 37 billion dollars to the Gates Foundation. Bear with me if I don't get swept up in the emotion of it all. This is going to sound cynical and I will go ahead and apologize in advance. I appreciate their giving. I think it is incredibly noble. They certainly have the power to create some real third world change and I am happy for them.
The fact remains that not a dollar of this money will go to pediatric cancer. You see, we don't qualify. To be a recipient of a grant from the Bill and Melinda Gates Foundation you need to qualify in one of four areas. You (a) need to improve global health (i.e. you must be an international health organization working on solutions to urgent health challenges in the developing world, including but not limited to HIV/AIDs, malaria, TB, acute diarrheal illness, and malnutrition.), (b) be an organization interested in education, (c) provide libraries, or (d) be in the Pacific Northwest and involved in early learning, housing, or community projects.
If, however, you are from any of the countries that actually purchase Microsoft products and you are interested in the global health initiative of curing the number one killer of children in the developed world you are simply out of luck. In the US, cancer is the leading cause of death from disease in children between the ages of 1 and 19. It accounts for more deaths than Cystic Fibrosis, Muscular Dystrophy, Asthma, AIDS, Malaria, TB, acute diarrheal illness, and malnutrition combined.
I can understand wanting to save all of the people in Africa. What I can't understand is everyone wanting to do it at the exclusion of what is going on within our own borders. In most cases, the borders within which these mountains of wealth were obtained. The fact is that our children are dying - yes, the ones right across the street. Take this one step further. Our families are dying. Everyone is affected by cancer. Cancer is the second leading cause of death in the U.S. bested only by heart disease. In 2003, 556,902 people died of cancer in the United States. I just don't understand why everyone is interested in sending their dollars elsewhere when we clearly have our own problems here at home. Funding dollars continue to be cut on pediatric cancer and yet spending continues to grow exponentially for "international" health initiatives. Please tell me why. Help me understand. Why is it so much sexier to help third world countries? Why?
I will tell you what. I will give in. Let's just say for the sake of argument that all of this international health is so much better than our children's health here at home. Let's assume that even a single dollar spent on childhood cancer research would be total disregard for human life and dignity. Give me $100 million dollars. This is .27% of the contribution by Warren Buffett. I will place that money in escrow to be managed by the person of your choosing. Each year I will use the profit from the interest of those dollars to fund quality pediatric cancer research. This will effectively quintuple the annual budget for neuroblastoma research. Once I have isolated a cure I will give you all of your money back in whole for you to spend as you choose. In fact, with a cure for cancer your will now be able to use my newly found cure (which was funded by your interest) to cure all of the kids in the third world of cancer. What a deal!
I know. I know. I am biased and cynical. I apologize. But, after all, this is my purpose.
4:11 AM 6/28/2006
It seems that my sentiments were shared by some in the diary. In fact, it looks like some of the sentiments were actually premeditated. Incredible. I had a few emails and even a few phone calls with offers of support and for that I am thankful. I was actually really hoping someone would write or call to argue the opposing position. I really am clueless. I want to know why spending the money in the third world is so much better than spending it at home. Everybody seems to be doing it. It seems to be as vogue as a Prada bag. Oddly enough that gives "The Devil Wears Prada" an entirely new connotation and twist. You can't hardly open a People magazine without seeing someone famous traipsing through the African safari and being compared to Mother Theresa. Heck, some are even finding it "cool" to give birth there. It isn't just Bono, Angela Jolie, and Brad Pitt. There are literally hundreds of famous people and leaders who make this trek to support the cause. The press is behind them and everybody seems so entirely supportive of their nobility. I have no intent to detract from that. I am glad that they are doing something. I am glad they are giving back. I just don't understand why they are spending their dollars there and I don't understand why nobody hasn't said publicly what I am saying here. We, the people of the developed world, and especially those in the US are incredibly generous when it comes to charitable giving, especially in the wake of some national or international disaster. Ever since the twin towers we have shown an incredible swelling of support, both emotional and financial, to just about every charitable cause supporting a recovery. We have also been generous at sending our dollars to help those half way around the world when they were faced with disaster - to the tune of billions.
To protect ourselves we have also sent billions in our troops and arms to Afghanistan, IRAQ and other points around the world. We have been supportive and taken a stand against terror wherever it has stood. As a nation we have stood together even when other countries were too fearful to stand beside us. We made cuts at home so we could continue to support our efforts abroad. We have cut all kinds of initiatives here at home - important ones too. Some were luxuries for our children like art supplies, music programs, and sports. But, we went beyond that. We dug deep and gave. We went beyond just cutting the fat and even began cutting our muscle. We have cut health programs and education too. In fact, just about every where we could, we have cut to support our military efforts and charitable support abroad. We have cut to the point of hemorrhage and I think even that is beginning to be seen by our skyrocketing deficit, inflation, and political infighting.
But none the less, as a society we continue to give and we continue to clamor in support of anyone who helps someone abroad. It really is noble.
But I ask......
When do we give back home? When do we decide that it is our needs that are most important? When are our neighbors here at home the ones we stand beside? When do we focus on our number one killers like heart disease and cancer? When do we focus on our elderly? When do we focus on our children? I ask you, when is it "cool" for us to be our priority?
When are we purpose?
5:41 AM 6/29/2006
For the last couple of days I haven't really focused on my kiddos in the diary so I think it is time to catch back up. The Dudely has an official ear infection. It all started on Tuesday afternoon. DeeDee and I picked him up from school and he began pulling on his ear. Graham also has a unique feature in that, whenever he is feeling sub par in any way shape or form, he feels the necessity to open any conversation with an explanation of his particular ailment. This is great when I pick him up from school or even when we are just running around the house. Regardless, the moment he saw DeeDee he went running up to her and before he even said hello he was already explaining his ear "owie" to her. "My owie DeeDee. My ear hurt. My Owie. Hurt. Ear. Hi DeeDee. My owie hurt." It is almost as good as having an engine malfunction light installed on him. The only problem seems to be when we are out in public or meeting someone for the first time. It can be somewhat embarrassing when someone says "And hello. Who is this cute little boy?" and he responds with "My hinny owie. Owie poo poos. My poo poo hurt. Hi." You see, double edged sword.
The good news is that yesterday morning we took the boy to see Dr. Debbie. He is now on antibiotics and thankfully alternating Tylenol and Motrin are seemingly doing the trick to effectively manage his ear pain. He even felt well enough to get in the pool a little yesterday evening.
Sydney is doing great. She has completely adjusted to her new class and new set of friends. I have really enjoyed all of her teachers but I am ecstatic with Miss Cathy. The kids are really learning and Sydney seems to be growing by leaps and bounds. I am amazed by what they have learned already. Most importantly, Sydney seems to be enamored with her teacher and the new environment she is in. She absolutely loves it and I think it is showing in her work which appears to be improving exponentially.
This week she is attending dance camp during the mornings. It is done in agreement with the school and she has been participating in the classes for 3 hours each day. Lynley and I really don't know what to expect but we will be attending their recital tomorrow morning at 11:00 AM.
Ainsley continues to grow. She is by far the happiest of our children and, at this point, the smartest. She continually amazes all of us. You would think that with two other kids proceeding her we would have seen everything but she continues to surprise me every day. At 13 months of age she has developed a sense of humor and it seems her favorite past time is making herself and others laugh. It takes a lot to upset her and most things fall off of her like water on a ducks back. There is no doubt in my mind that she still sees herself as an only child. In her mind Graham and Sydney are for entertainment purpose only. They are as valuable as any toy on the shelf out in the play room.
Purpii, aren't they great.
5:58 AM 6/30/2006
Yes, so I am a little late getting to my diary this morning. After you finish my diary I think you might understand why. It is not a secret. I think just about everyone knows that about my favorite part about being alive is the fact that I am a daddy. It is the most rewarding and important job I will ever have in life. It is nights like last night were I realize how much power we really have as parents.
It was in the wee hours of the morning that I opened my eyes to see Sydney walking into our room. It took a moment to clear the cobwebs from my head and realize what was happening. I asked what was the matter and she told me that she had a bad dream and was scared. Lynley and I pulled her up onto our bed and began rubbing her back and calming her. Almost immediately she began to feel safe and protected in our arms. To me, that is power. How many times in life do you have someone that trusts you so completely that they feel completely safe in your presence? Outside of my children I would say that the answer is probably zero. That is not to say that I don't make my wife feel safe. It is just not in the same way. She understands reality and our position within the world but children, well, they have their parents and it is our job to make them feel safe and secure and it is tremendously rewarding when they do.
The night went on and we all gradually fell asleep. Whenever Sydney would shudder I would reach over and rub her back. Almost immediately she would calm down and go back to sleeping peacefully. It was a rewarding night to know how safe I could make my child feel. It is the type of thing that gives you that warm all over feeling.
Hold on, that's really warm.
And wet?!?
Damn it! Lynley, Get up! Sydney just wet our bed.
Purpose and Daddyhoodom they bring great joy and, on occasion, a puddle.
6:19 AM 7/5/2006
I hope every one had a wonderful 4th of July. We are still recovering. The kids had an absolutely wonderful time although I will bet that they have a tough time getting up this morning. I know I did. It all started yesterday morning with the preparations for the neighborhood parade. We decided to decorate Sydney's new Cadillac Escalade (no, not the real thing) with flags, streamers, and everything that DeeDee could find at the store. The little battery powered car turned out to look pretty good. Sydney drove the two block distance to the parade route on the street and then waited patiently with her brother for the parade to begin. Several hundred turned out and, in fact, I have heard as many as thousand, to celebrate the fourth of July in our neighborhood. Hundreds decorated their bikes, cars, wagons, and strollers to make the trek around Monticello park. The mayor even stopped by for a while.
Sydney drove as Graham sat right beside her and waved his two little flags. DeeDee, Lynley, Ainsley, and I walked beside them as they made there way around the park. We were festive but our major goal was protecting the pedestrians from the maniac driver. In all honestly she did an incredible job maneuvering around the quarter mile parade route. It was hot and everyone was thankful that they were serving water at the conclusion of the parade as we waited for the prizes to be awarded. I am happy to announce that Sydney and Graham won the "best decorated vehicle". Hopefully in the next day or so we will be able to get some of the pictures up on he website.
The remainder of the morning was spent in the pool. After nap time we made our way over to the Robertson's for Preston's fourth birthday party. There were rugrats running everywhere and the kids seemed to have a blast. As is usual there was way too much hugging between Truman and Sydney but that is something I have come to accept. If you go out with the Robertson's there is going to be groping. That is just the way those men are. We left the party late. Ainsley and Graham could barely keep their eyes open so they dropped us off at home as Mommy and Sydney had a date night out to watch the fireworks. They finally arrived home at about 10:30 PM, 2.5 hours past her bedtime. I am anxious for her to wake up so that she can tell me all about it.
Well, I had better run. I had a late start this morning as well and there is a lot of work to cram in this 3 day week. My purpii await me.
5:07 AM 7/6/2006
Happy Birthday Lynley! She is not quite up yet this morning so I can't get too excited yet. I am sure she would not like the fact that I was celebrating her birthday without her. In fact, I am pretty sure that she would like us not to celebrate it at all. I keep explaining to her that she is like fine wine. Each year she gets better and better. But she seems to think of herself more like a carton of milk and she is just waiting to curdle and spoil. Regardless, the kids and I are happy to celebrate another year for her.
Today, however, will not only be about Lynley. Early this morning Sydney will be going back to Camp Sanguinity. This is the same camp that she went to last year and she had an absolute blast. It is put on by the child life group at Cook's and all of the kids seem to truly love it. Sydney still talks about last year's camp to this very day and can't wait to go back.
Sydney will spend all day at the camp. She will be swimming and exploring at the camp grounds which are a little over an hour and a half from Fort Worth. We are to be up at the hospital at 8:00 AM to load her onto the bus for the ride out. I imagine that we will see several of our old friends and I am sure that there will be many new ones. The one thing that I can guarantee is that it will be a truly memorable day for Sydney. Hopefully when she gets home she will still have enough energy to help celebrate Mommy's birthday. Either way, we will have all weekend to celebrate.
It will be a day of dual purpose.
5:48 AM 7/7/2006
I remember last year when Sydney went to camp. I was so worried. I remember thinking about it all day at work and wondering if she was okay. It was a tough experience. Letting your child go to camp for the first time is a huge milestone. She has grown so much in the last year and this time was a little different.
This time, instead of holding on for dear life with tears rolling into my eyes as she boarded the bus, I simply asked that they bring her back. There was no fear or worry. I knew she was with capable people and I knew she would be having a wonderful time. I thought about her several times throughout the day but instead of a sense of worry I was just curious about what she was doing at that moment. Yes, it was a far cry from her first trip to Camp Sanguinity.
There were some things that remained the same. When the bus rolled back in she was once again the first one off but this time it was because she had to go to the potty. The other thing that is eerily similar is the fact that we still have no idea what went on. Once again, she is very tight lipped about the experience. We know she swam because her bathing suit was wet but beyond that is pretty sketchy.
She did mention that she went fishing. Well, she said, "Every one went fishing and everyone caught a fish. Except for me. I didn't catch one. I got to play with the worm though so it was okay." Yes, my daughter, the bug lover, what can I say? We also found some evidence of various art and craft projects but beyond that we really know very little. We know she had hot dogs for lunch but we don't know with whom. We know she had a big friend that was a girl and a little friend that was a girl. We know the little girl was five.
Not exactly the exciting story that you were looking for. Well, me neither. I thought we would have more. I feel like a CSI - a camp scene investigator and I just keep coming up short. Regardless, she had a wonderful time and we are, once again, tremendously thankful for the experience.
Well, it is late and I have to run.
Today will be a full day of purpose but we will talk about that next time. In the mean time say a prayer for little Paul.
4:52 AM 7/10/2005
The weekend was a completely restful one. We spent just about the entire weekend in the pool and if we had not made them get out I am pretty sure that they would still be in there. We really have a great time. We spend most of our time on the diving board. Sydney loves to make cannonballs and Graham loves to fake it. You see, Graham is still afraid of going off of the diving board yet he spends half of his time on it. One of his favorite past times is watching his daddy and his sister try to splash Mommy when jumping off of the diving board. He is almost always the first to begin chanting "Get mommy wet. Get mommy wet." He will even run up to the edge of the diving board and act like he is going to jump off and splash Mommy but, without fail, he will chicken out and run back to the foot of the diving board.
I spend the other half of my time sitting on the end of the diving board bobbing for kids. They love to hide under me as I try to scoop them out of the water. I really don't know what to do with them once I have them so I just throw them back in but they seem to have a great time. They will continue to come back for more as log as I stay on the diving board.
Sydney continues to swim with out any air in her floaty swimsuit. Over the weekend we tried several times to take the floaties out. She would consistently sink to the bottom without them even though the did not actually contain any air. It wasn't until late yesterday afternoon that she finally began to grasp the concept and began to swim around the pool without her floaties. Although she still swims much better with the floatless floaties she is getting much better. It is a strange little mental block and it really demonstrates the power of the mind.
That, in a nutshell, was our weekend. I spent much of our the rest of the time and some sleepless nights thinking about Paul and his family. He is really at a crossroads and his parents are having to make some truly tough decisions and they are certainly decisions that no family should have to make.
Many may remember Paul from the beginning of our journey. His father was instrumental at giving me strength and direction when Sydney was first diagnosed. In fact, I still live by many of the words that he spoke. He gave me hope at a time in life when I needed it most. Paul was diagnosed several months before Sydney. His disease was extensive but he responded very well to the treatments. He was on the same protocol as Sydney and by the end of it he was clear of disease and really showed no worse for wear compared to many of his peers in the neuroblastoma world. His family would have preferred that he been a part of the ch14.18 antibody trial but it was closed during the time that he would have been randomized. Other than that you could call his treatment as picture perfect as one could expect. (Isn't that a sad description. I guess you just have to live in our world.)
Within about a week of Sydney's abnormal MRI and funky immunocytology report back in October and November of 2004 Paul's family also received some bad news. He had relapsed. The doctors advised them to put him on the regular relapse and salvage regimen of Topotecan and Cytoxin. Although he would never completely clear of disease he would eventually get to a point of minimal residual disease. About a year later he would begin to progress on this concoction and they switched him to a low dose VP16 while they waited for the hu14.18 trial to reopen. Unfortunately, while waiting for the trial he would begin to progress again. The hu14.18 antibody finally reopened as they were looking for other options. They tried starting the first round of antibodies but I think it become clear to everyone pretty quickly that his disease was growing too quickly to be managed by the antibody. And that led us to last week. Paul was scanned again last week and they found the progression moving relatively rapidly. The question became "What to do?" When you have done everything possible for your child and the pool of options continues to shrink what do you do?
Well, I have spent much of my last week and weekend thinking about that and I have tried to be a good sounding board for his father. I have done my best to balance fact with fiction, hope with hopelessness, and sound opinion from grasping at air. It has made me think and weigh some incredibly difficult decisions. When it comes to neuroblastoma I certainly have some very one-sided opinions but this has given me the opportunity to see many sides of the issue that is life. In short, it has been a journey for me as well.
In the end, Paul's family has come up with a very sound plan. It is one that can still provide them with the greatest gift, Paul's life. He truly sits at a precipice and things can go either way. It will be a tough couple of weeks as their family fights to get him back on the right track. It will not be hard for me to realize that every moment of the next couple of weeks will be critical. As I swim with my kids you can bet that my mind will be elsewhere because every prayer counts.
This is what purpose is all about.
5:49 AM 7/11/2006
After I picked the kiddos up at school yesterday afternoon we made a trip to Dr. Debbie's Sydney had been complaining on Sunday afternoon that she had an ear infection. No, she did not say she had an ear owie, swimmer's ear, or anything of the sort. She said she had a bonified ear infection. Most people that aren't in the know kind of shrug off a five year old when they tell them they have an ear infection. Even Dr. Debbie and I kind of have that thought running in the back of our minds every time she complains about another ear infection. It isn't that we don't believe her ear hurts. I think we just have a tough time believing a 5 year old can correctly diagnose an ear infection. Sure enough, every time she says she has an ear infection she is right on the money. Yesterday, was no different. We sat in Dr. Debbie's office. Dr. Debbie came in. Sydney told her she had an ear infection. Dr. Debbie looked in her ear - sure enough - raging ear infection. Dr. Debbie looked and me and said "You know, I was really thinking it was going to be swimmers ear but, sure enough, she is right again."
I am really amazed by Sydney. Sometimes she has so much drama. The littlest things will set her off. She can get a minor scratch and she will act like the world is coming to an end but give her a raging ear infection and she handles it so nonchalantly that you know for sure it could not possibly be an ear infection. I just don't understand how she could be in that much pain and go on without complaint. Then again, I haven't walked in her shoes so I will probably never know. She is one tough little cookie.
While we were at the doctor's office we had to have Graham's ears checked out too. It wasn't so much that he needed his ears checked out as much as he thought he needed them checked. He is two and going through that stage were he has to participate in everything. He is the "me too" kid and poor little Dudely is just as anal as his Daddy. By looking at him you would think he had some kind of obsessive compulsive disorder but I can assure you he, unfortunately, is just like his Daddy. No matter who goes in the house first he must open the door for himself and then shut it behind himself as he mutters "Myself!" If you place him in his high chair he must climb out and and climb back in as he mutters "Myself!" If you carry him to bed he must climb back out of the bed walk back to where we came from and do it all by himself as he mutters "Myself!" This must happen or his world will come crashing down. He is two. He is a Dungan. He is my son. What more can I say.
Welcome to my world. Welcome to my purpii. Myself!
6:21 AM 7/12/2006
Good morning! I don' know about anyone else in the world but I did not sleep a wink last night. Now, before I scare the wits out of anyone, I should probably say that all of the kids are just dandy. The reason I could not sleep last night was related to the CNCF board meeting. Things are going really well for the foundation. It is continuing to grow and mature and our accomplishments just seem to be piling up. Unfortunately, the problem is that we are reaching a point that we can not grow any more with out some full time workers. We are doing as much as we possibly can. Ultimately there are about 3 of us that do the bulk of the work on the foundation and then we are supplemented with a small group of volunteers that help out when we need them. In fact, most of our projects are actually run by families that have been touched by neuroblastoma.
The frustrating part about it is that there is no more that any of us could possibly do in any given day and we have to turn down opportunities simply because we don't have the time to give them adequate attention. It is time for us to step up to the plate and commit some resources. We need at least one person who does nothing else but sleep, drink, and work on the foundation everyday. Even at that we will still probably be more busy than we can handle.
Right now there must be at least 5 major long term projects going on within the organization and on any given day there may be as many as 10 projects that need to be worked on. Truth be known we also have the opportunity and ideas to be working on a hundred more if we could just carve out the time. I am a wimp when compared to Pat who does the bulk of the work but even I find myself struggling from underneath a huge pile of - er - opportunity. Fact is, I am working on two major projects. The first is the new CNCF website which is a huge undertaking in and of itself. That project, by itself, is enough work for a team of four for six months. It is an enormous project. I am happy to say that we are nearing the end of the first phase of development and we are in the process of launching different sections of the website. This month we have already relaunched the basic website complete with a content management system, a new store, personalization features, and a bunch of back end functionality. Next week we will begin unraveling the new NB online community and then shortly after that it will be the new NBHopePages blogs. That is only a fraction of what is coming. Like I said, it has been a huge undertaking.
The other thing on my plate is Lunch for Life. Yes, it was my baby but it is now much to large to be handled by myself and I really want to take it to the next level. Since last December we have raised almost $300,000.00 with Lunch for Life alone. It enabled us to continue funding 3 research grants from last year, up to three new grants this year and help fund pilot projects both at the NANT and MSKCC. It has been a huge success but it could be so much more. I just need help to take it to the next level. We will be relaunching Lunch for Life again this September during Pediatric cancer awareness month. We have two months to make it bigger and better than it ever has been before but I need help. I am looking for five to ten volunteers that are interested in helping plan and pull off this year's Lunch for Life campaign. It won't be easy work but together I think we can truly take it to the next level. Who knows, we might even be able to reach that one person who is going to make the difference. I don't know what the future holds but if you are interested in helping me try to change the world for these kids I would sure appreciate your help. The work will include generating ideas, planning events, contacting media, getting materials together, finding sponsors, and the like. If you think you can help you can volunteer by simply sending me an email at mdungan@lunchforlife.org.
Thank you and I look forward to a great season of purpose.
Until tomorrow.....
5:39 AM 7/13/2006
Good Morning! First off, I would like to thank many of you for your support with Lunch for Life. It looks like we are well on our way to establishing a core group of Lunch for Lifers. Many of you are other families that have been active in Lunch for Life before but I was pleasantly surprised by those of you who had no immediate connection to the disease. You just want to help because you can - pretty heartwarming. Thank you. I am hoping to have the group formalized next week so we can begin the process of planning this years event. In the meantime, I really appreciate your offers of help and look forward to hearing from even more of you.
Sydney and our family are also in the process of preparing for another trip to Ney York, or York as Sydney calls it. Yesterday we officially began this treatment cycle by starting with the GM-CSF shots. I would like to say that this, our tenth round, began smoothly with all of our experience but we actually had a little drama. About 30 to 45 minutes after the injection Sydney doubled over. She began crying and screaming that her tummy and back hurt. This immediately put Lynley and I into emergency mode. My mind immediately raced through all of her meds. Let's see she is only on Singulair, Cefzil (antibiotic), and GM-CSF. What could it be? Just for good measure we dosed her with Vistaril. We probably should have premedicated her with that in the first place. The cries and the wails continued for a good thirty minutes. Lynley had a pretty good inkling that this was probably just gas but I was still unsure. I have had gas pain before and know it hurts but I was shocked by the drama that was coming from Sydney. It just seemed like it would have been a major overreaction to gas pain. We called the oncologist on call to see if we were missing anything major and waited for her call. In the meantime Sydney began to settle. Within another thirty minutes she was back to eating and seemed no worse for wear.
At this point we are just hoping that it was an over reaction to gas pain. The GM-CSF could technically cause this type of problem but it is a pretty rare side effect. I guess the antibiotic could possibly cause stomach upset on an empty stomach but it did not say anything on the packaging. In the end, Sydney just got better and we still don't really know what caused it. We have a pretty good indication that it was gas related. She spent the hour after her hysterics with the toot-toots. We just don't know the cause.
Today we will premedicate her with Vistaril and watch her closely. We will also spread her meds out a little further to see if we can isolate the culprit should she raise her ugly head. Hopefully, we wont have a repeat.
With 2 months between treatment cycles I had forgotten the feeling of being in treatment.
I haven't forgotten my purpose though.
6:17 AM 7/14/2005
Well, once again we have reached that point and this will be the last time I write in my Diary before Sydney and I head to New York. We leave Sunday morning and begin antibody treatment first thing on Monday. With Sydney feeling so well it gets harder and harder to go back. It isn't that I don't believe in the medicine and it isn't that I don't think it is the best thing for her. It is. The difference is that I used to not think about it. I just did it. With Sydney feeling and doing so well I just hate splitting us all up. I know it is for the best. I just like to do it less and less every time. On the other hand, it is an excellent opportunity for some more daddy / daughter bonding time. In that sense, I am so completely thankful for the experience. I think I will just think about that aspect of it from now on.
Getting out of town is never without any drama and yesterday was no exception. When we got home yesterday afternoon the whole family decided to go out for a swim. My studly little son once again found himself on the edge of the diving board shouting "Get Mommy wet!" For some unknown reason, instead of walking back down the diving board and getting off, he hopped right into the water. I know you must be thinking "Well, Mark, that is technically what you are supposed to do on a diving board." Sure, that sounds reasonable. But, you see, we have been trained otherwise so my answer would have to be "No! That is not what Graham does on a diving board." You see I am surrounded by three kids. The net effect of having tree kids is not that you make them as smart as you are by training them. No, that is not how it works. It works by the little twerps telepathically sucking out all of your little brain cells until you are just as dumb as they are. You make them smarter by making yourself dumber and ultimately this is the reason that parents are so insanely insipid by the time their kids are teenagers. I see the look in your eyes. You think I am wrong. And my point is that you must not have 3 kids because the more kids you have the more evident this process becomes. Kids make you dumber. All of you people with 1 or 2 measly kids simply have no idea because the process is happening too slowly. And, if you think about it, your disbelief in the process is only further proof that it is exactly what is happening.
Regardless, the Dudester jumped off the diving board for the very first time. In the end, he would do it several times. My Daddy radar should have been going off however. At two years old Graham still doesn't completely grasp all of the concepts that we have to teach him. In other words he hasn't sucked out those brain cells of mine yet. Okay, for you disbelievers, the boy just hasn't aged enough yet. When we tell him to jump he still jumps like a toddler. Although the trip up on the hop up is pretty good he still doesn't necessarily know which direction he is going to land. It is hard to explain but anyone with kids can remember those first jumps when their kiddos were just 2 years old. They are wobbly and non directional at best and about 50% of the landings fail. Anyway, we kept telling Graham to jump to Mommy in the water and instead of him running and jumping towards Mommy he was doing this little toddler hopping thing off of the diving board. We should have known but, inevitably, he eventually hopped off the side of the diving board. He hit water but his the side of his head hit the concrete edge of the pool first. It was like a slow motion nightmare. Lynley and I moved quickly and within seconds he was up on the porch as Lynley surveyed the damage. Graham got a pretty good scrape on the cheek, a little blood blister under his nose, and a busted lip but every thing else seemed to be in working order. We watched him very carefully for the next hour or so for any signs of a concussion but he seemed to do just fine. He looks like he went through the ringer but I am happy to report that he is fundamentally okay. Later that evening Lynley would take him back out to the pool for a little while to get him to jump off of the diving board again. We did not want him to fear the pool or the diving board forever because of this accident. Sydney would help him with the concept and he would eventually make another couple of jumps off of the diving board and into Mommy's arms.
See, now isn't that excitement. I am happy to say that Sydney's GM-CSF shots were very boring. We premedicated her with Vistaril and it went off without a hitch.
Purpose never stops does it.
4:04 AM 7/17/2006
Well, here we are back in New York. Not only are we settled in but we had a pretty incredible first day. As soon as we arrived we headed over to Central Park. During the summers they turn the Trump skating rink (the rink within the park) into Victorian Gardens carnival extraordinaire. Sydney and I spent about two hours riding the roller coaster, slide, and various rides. We had a blast right up until one of the kiddos in the parachute (a flying version of the teacup ride) lost his cookies and splattered his lunch all over the concrete below us. It was not a pretty site. It provided an excellent excuse for Sydney and I to make our exit. After all, we still had some minor things to do like unpacking and going to the grocery store. Eh, priorities. I think we will be just fine as long as Lynley doesn't find out.
We spent the remainder of the afternoon doing all of the things that we were supposed to. We went to the grocery store and we unpacked. Heck we even cleaned up a little before we went back outside to swim in the kiddy pool that they had set up out on the patio of the third floor. Later in the evening we even had dinner at Sydney's favorite restaurant, "The Wicked Wolf." All in all, I guess our first day could not have been more fun from a kiddo standpoint.
From a Daddy standpoint and a worry standpoint it was a little different. Sydney has continued to complain about abdominal pain. It all started last Wednesday with her first shot of GM-CSF. Luckily on Thursday we skipped an episode. At the time we thought we either got lucky and it was a one time incident or the premed of the Vistaril was keeping the pain from rearing its head somehow. Unfortunately Friday, Saturday, and Sunday were not so lucky. On Friday Sydney had the pain in her abdomen once again. The pain was relatively short-lived. On Saturday she had the pain again and, this too, seemed to occur about 30 minutes after the infusion. These later episodes were no where near the intensity of the first night of pain and with a little distraction she always seemed to recover within a few minutes. Yesterday, however, we got a new twist. Sydney had the pain the first thing once we got on the plane. The weird thing about this incident was that we had not even taken the shot yet.
I had her describe the pain. I asked her if it was a sharp or dull pain. She seemed to think it felt like someone was pushing on her tummy which I took to be a rather dull pain. She also consistently points to the source of the pain as being about an inch above her belly button and from the inside. The third interesting thing about her pain is that she describes her tummy as beeping. I take it to mean that it is a throbbing pain but you have to realize the when interpreting a five year old the jury is almost always out.
This all has me pretty bothered and rightly so. No parent of a child that has had neuroblastoma likes phantom pains. Many are just normal aches and pains and some are even late effects of the treatment but all send a shiver up a parent's spine. I can't wait to see the team this morning to discuss it with them. I am hoping that they have a simple explanation or, at the very least, have seen this before with some benign meaning. I think I will end here and say a few prayers just in case.
Purposefully watching.......
5:28 AM 7/18/2006
The very best thing about first days back in treatment are when they are over with. Yesterday was no exception. It was perhaps one of the worst treatment days she has ever had. It wasn't the pain that was the problem. I think we have all grown used to that. It was everything else. Her oxygen sats were low, she was itchy, and she was out of her gourd. At one of the worst points Cat and I had to physically restrain her to take her oxygen. It wasn't a pretty site.
Medically, she recovered very quickly but she was uncomfortable the rest of the day. She had residual pain all over her body and it was late last night before she got any true rest. The pain was not severe but I think in combination with her mental state she just could not get comfortable. In the end we were up several times last night. Luckily, I think she has finally totally recovered.
Unfortunately, I don't have much time this morning. I awoke late and there has been laundry and "stuff" to deal with this morning before Sydney awakes. I am in a race to have her favorite blanky cleaned and dried before she starts another day. It was an innocent bystander in a messy event last might. The great news is that day 1 is over. In fact, that is the great thing about all bad days. It is good to get them out of the way so you can enjoy the good ones.
If history tells us anything today should be better for Sydney. It won't be a perfect day but it should hopefully be better than yesterday. We are still a couple of days from getting in the groove and getting used to the drugs. But, we will get there.
After all, this is my purpose we are talking about.
4:59 AM 7/19/2005
Now that was much better. That is how a round of 3F8 was supposed to go. I imagine anyone reading my diary that had not had a child go through antibody therapy will probably have thoughts of calling child protective services after hearing this. But, the day went well. I was really surprised. We purposefully held back the Dilaudad. After the day before no one was really excited about the idea of getting her all drugged up too quickly. So, the pain came. We gave her about a half a dose and that was it. The remainder of the treatment she experienced pain but we were more inclined to wait it out before we acted too quickly. In the end we never gave her any more Dilaudad.
The hard part of this was watching her as the waves of pain went through her. She handled it really well and, to be perfectly honest, she would have refused the pain medication anyway. As it stands now we have to give her the Dilaudad without telling her or she will throw a fit. She thinks that it is the pain medication that causes the pain. The trick is to help her manage the pain. She does suffer a bit through the treatment and I am quite sure that through the eyes of an inexperienced observer it would seem almost cruel. The fact of the matter is that she never remembers the treatments and the less narcotics we give her the earlier she recovers. It also seems like she has less residual pain. For Sydney I think residual pain is more of a mental state than anything else. I think she probably has small waves of pain. The difference is when she is sober she just shrugs them off or she has the mental where-with-all to deal with them. When she is drugged up she seems to have no ability to cope. She ends up spending the rest of the day miserable and in tears. So, it is a trade off for Sydney. We can take a little more pain that she won't remember anyway and then let her enjoy the rest of her day in rather comfortable bliss or we can reduce the pain a bit but have her spend the rest of the day in a foggy narcotic rage. On the outside it looks like she has just as much pain even with the larger doses of Dilaudad. I think the reason for this is that the narcotics affect her mental state so much that she can't cope with the pain and ends up feeling the pain even more. Does that make sense? It is hard to describe but I definitely think that, for Sydney, less is probably the way to go.
On another note I met several new parents and children yesterday and Sydney made a new best friend. As I stood and chatted it up yesterday afternoon Sydney and her new friend played and played. They kept running from room to room playing hide and seek and then finished with a rousing game of pirate. Sydney even made some hats for them out of construction paper. I think she had a great time and it made all of my treatment decisions feel worthwhile. It was a great treatment day and a complete opposite to the day before.
My purpose felt good.
4:28 AM 7/20/2006
Good Morning! Well, we finally really seem to be on the road to improvement. Yesterday Sydney really seemed to tolerate treatment well. She was able to find her zone and work it out. If it had not been pain that I knew she was trying to get under control it was almost funny how focused she was. At one point as Dr. Kushner and I were talking she said "Excuse me but could you please be quiet? It makes my tummy hurt when you talk." She said it so matter of factly and then she went right back to concentrating as hard as she could. It was her way of telling us that we were breaking her focus. Sydney was able to maintain this focus throughout the actual treatment. She only received a single half dose of Dilaudad and I don't really even think she needed that at that point.
The hour or so following treatment was a little tougher. She had some significant residual pain and had difficulty mastering it. At many points we tried to give her some pain medication but she refused each time. It is a difficult to watch your daughter suffer so and refuse medication but I have to give her some leeway here. I don't always listen to her. After all, she is only five. But, when it comes to treatment I have to think she knows more than I. She certainly knows how it feels. So, if she seems like she is making rational choices I oblige. In the end, I wish I had given her a little more Dilaudad but I think that would have been more for me than for her. Although she was a little sensitive in the afternoon she had a pretty good remainder to her day.
We are still tracing down her stomach pain. No one seems to think it would have anything to do with disease so we are still searching for the best way to deal with it. I will go into it more later but the belief is that the pain is due to the new preservative that they are using in the GM-CSF.
Well, I have to run. Sydney and I are going on a little field trip this morning with the president of the Ronald McDonald House. The information is pretty sketchy. From what I understand we are going with him to CBS. I really don't know more that that. Some have hinted that we are going to The Early Show. I don't know whether we are going to watch or participate and I don't know whether or not we will actually be on TV. At the very least I thought it would be a fun detour from a morning of therapy. Regardless, we are meeting them at 7:00 AM and we are expected to be back at 8:30. Well, I best be off.
I have got a purpose surprise this morning.
4:21 AM 7/21/2006
Even though Sydney and I are now famous from our stint on the CBS Early Show we have vowed not to let it go to our heads. We have promised to remember all of the little people who helped us along the way. Getting used to our new roles as famous people, I became Sydney's agent and forced all of the nurses on the floor to address me as Mr. Dungan for the remainder of the day. I have to admit, it was nice to hear them call me Mr. Dungan. It was far better than listening to them tell Sydney to get her nerdy Dad out of the way. For those of you who might have missed our mega star appearance, we actually did get our moment on television. The segment was originally supposed to focus on the Ronald McDonald House and all of the wonderful things that they do. Unfortunately, do to a strike of CBS workers, the segment was cut short and it ended up just being an introduction of Sydney who happened to be from the Ronald McDonald House. I was happy that we had the opportunity but it really was far more important for the Ronald McDonald House to get he publicity. I was disappointed for them.
On the way back from the set I discussed the Ronald McDonald House with the president. They have spent over $2 million in renovations on the house and I wanted to let him know how much we appreciated it. Through our conversation I learned some very interesting things. For instance, did you know that McDonalds only provides a portion of the funding to the House. In this case they provided about 60% of the funding to purchase the house but it was up to the board of the house to raise the remainder. Additionally, it is the responsibility of the local house to cover operating expenses. That means that the board somehow needs to raise the millions of dollars that it actually takes to run the house from day to day. That includes the $370,000.00 electric bill, the salaries for the multitudes of employees, the water, the gas, and the telephone bills. I had always assumed that McDonalds was covering this funding, but no, it is up to the individual house. Even the dollars that are raised at the drive thru windows for Ronald McDonald House Charities don't make there way down. Those are used to support one of the many other Ronald McDonald House Charities. I don't tell you this to bash McDonalds. They are doing some incredibly charitable giving. I tell you because I was shocked to learn that the actual day to day running of the house was not funded by them.
I have a funny side note to Sydney's celebrity. On the way back from CBS Sydney saw a stuffed Princess Pony at the sidewalk sale for the Ronald McDonald House. She really has a "pony thing" right now and I decided to oblige her with a new stuffed friend. The tag on the pony reads "Snow White's Pony is named Princess and she's just as beautiful as Snow White. Snow White found her one day injured in the woods and nursed her back to health, so now they take long rides together through the forest and chat with baby bluebirds, soft bunnies and tiny chipmunks. They even take carrots along for the a picnic (but never, ever apples!)" For some reason she decided that everyone she saw should regale her with the words on this tag. She handed it to everyone she saw and sure enough they read it. One of the funniest moments I have seen in a long time was when, in a half looped Dilaudad state, she asked Dr. Kushner to read it to her. To understand how funny it is I think you have to know Dr. Kushner. He has a dry wit and a serious professional disposition. This man is serious about killing cancer and saving lives. For some reason, just hearing him talk about soft bunnies and tiny chipmunks left me in stitches. I was just waiting for him to go skipping around the room. For some reason, I don't seem to think we will see him for the rest of our stay but, to give him credit where credit is due, he had the most creative rendition by far.
In the end, Sydney had a pretty excellent treatment day. Once again, we found the treatment hour to be perfect. She tolerated the infusion wonderfully. I snuck in a half dose of Dilaudad but, in retrospect, I wonder if she really truly needed it. She did have some residual pain in the hour following the infusion but it was not nearly as bad as the day before. Today will be the last day of treatment this week and we will have the weekend to rest. Sydney and I are looking forward to lots of fun in the park.
I might be a celebrity now but I still have my purpose.
4:39 AM 7/24/2006
I can not even begin to tell you how much fun Sydney and I had this weekend. In fact, I am pretty sure that if there is some law limiting the amount of fun you can have while being treated for cancer then we surely must be outlaws. The funny thing about it was that our weekend was totally unscripted. Sydney and I simply went with the flow and ended up soaring along the tops of the waves. I simply can't remember a time when she and I had so much fun together.
It started on Friday. Friday was a truly unique day. Almost unbelievably, Sydney's peripheral IV made it through the entire week. That is extremely unusual. Treatment went well. Once again, she really experienced very little, if any, pain during the actual infusion. She did have some residual pain in her throat but it was minor compared to the days before. Oddly enough, we did not give her any rescue doses of Dilaudad. Unfortunately, at sometime during the infusion, or shortly thereafter, I am pretty sure that her IV blew. When we finally unplugged her and began the process of removing all of the medical apparati from her hand we discovered an extremely swollen little hand. It look somewhat like she was morphing into the stay puff marshmallow man. It sounds funny but, in retrospect, I was really surprised that she wasn't in tremendous pain. I don't know how much 3F8 leaked into the tissues of her hand but I am pretty sure that if she had any disease in that little paw it was completely saturated in the neuroblastoma poison. I am fairly secure in saying that her right hand will never be a point of relapse.
We ended up napping and watching cartoons most of the afternoon but once she had fully recovered we made our way back out into the city. Sydney decided that she wanted to go to the park. Almost as soon as we got there it started pouring but, no matter, we frolicked like two drown rats. We ran around and then slowly made our way back home by running from one awning to another. In the end we were both soaked through but we had a spectacular time. When you are having that much fun you really don't care what you look or how wet you are. We received some funny looks but for the first time in quite a while I felt completely at ease. It was freeing. Sometimes in our big grown up complicated worlds we forget to forget and just run around in the rain and giggle (Yes, even us big hairy manly men) and it can be such an enlightening experience. To this day I am still amazed at how much I learn from Sydney.
On Saturday we had our usual breakfast treat with Allie at Cafe Luca. Allie is our New York friend who adopted us early on when we began our journey in "the city" a little over a year and a half ago and she has been putting up with us ever since. We have always found ourselves spending weekends with her and it is always a highlight of Sydney's trip. After breakfast we went to St. Catherine's park near Sloan and then meandered our way through the Upper East Side until we made out way up to Central Park. We ended up meeting Allie again at the Hans Christian Anderson statue where from 11:00 AM to 12:00 PM story tellers regale the kiddos with fantastical stories every Saturday during the warm months. The stories are quality and, in some ways, I think the adults enjoy them just as much or more than the kids. At the conclusion of story hour we once again found ourselves in the sprinkling rain. On our way out we passed a human statue. A say human statue but the correct term may have been mime. Regardless, Sydney was quite sure she (the statue) could not possibly be real. We told her to go touch the lady's fingers and sure enough she came running back and was still quite sure she was not real. Allie gave Sydney a dollar which she put in the can in front of her and the fun began. Sydney looked up in awe as she danced upon the pedestal. She was amazed and could not understand how they could mechanize such a statue. Sydney was clearly fascinated with her. As we stepped away Sydney kept peering over her shoulder. As the rain began once again, our mime scrambled off of her pedestal to run for cover. Sydney yelled at Allie and I and said "Wow, look she is a real girl.". No doubt, Sydney was enamored as she spent the rest of the weekend trying to be a statue.
Well crud, I have run out of time and I didn't even make it through the weekend. I guess that should tell you something.
Sometimes there just aren't enough words or time to truly describe your purpose.
4:57 AM 7/25/2006
We arrived at the hospital just before 8:00 AM and we left just after 4:00 PM. You might think it was a long day of high drama. Surely there must have been lots of frustration and waiting. Those are all of the things that I would have though about but no, it was none of that, my twerp simply just did not want to leave. Mondays are always long days and Sydney and I have been beaten into submission. We have been in the oncology game way to long and we are professional waiters so it takes a lot longer than a full day at the day hospital to get us even remotely stirred. The day started with a kidnapping from the pokey. As we were waiting for our finger stick we were beckoned into Yichih's office for a little checkup. All was well but they were in a rush to get us going as quickly as possible. Nearly every 3F8 room was double booked. Once Sydney got a thorough once over we made our way back to the poketorium for our finger stick. We were moving like clockwork. It then becomes a waiting game as we waited for our results which dictate whether or not she will receive her shot of GM-CSF. It took a while to get our results but all at once about 4 different nurses converged on us - "Don't give the shot! You did not give the shot did you?" Sydney's white count was higher than it had ever been at a little over 55,000 and her ANC was at 25,000. That is about 5 times normal and at a threshold that can be dangerous. The good news is that it saved Sydney from having to endure a shot yesterday.
Then we waited and waited and waited. In fact, it was almost noon before we even had our orders. That was okay by me because many of our friends are in town and I spent much of my time socializing with other parents planning the demise of neuroblastoma. Sydney was content playing with the child life folks and watching Sponge Bob. It was about noon when we finally made our way back to the bleedery for her peripheral IV. This one did not go particularly smoothly but, with Sydney's favorite nurse Marie, it was survivable. Unfortunately, the first try ended in a swing and a miss but the second was dead on. The unfortunate issue with the second poke was that it requires Sydney to have her hand in a somewhat funky position. I think it is probably unlikely to last for too many days and, quite frankly, I was surprised that it lasted through yesterday's treatment. In the end however, they found a comfortable place for Sydney to rest her hand while they taped her up. It looks awful but Sydney has not complained one iota.
Treatment was interesting. Once again, Sydney went through the infusion with no more than a tickle. I don't think she complained even once about pain. There was Dilaudad on board which made her a little twerpful but I don't think she ever had any pain. She received no rescue doses. After treatment she had some delayed reactions. She complained of some pain but I don't necessarily think it was related to the 3F8. I think it was more a result of the Dilaudad and her state of mind. Once we were able to get some more Vistaril down her she settled right down and slept the afternoon away. Some of you might be thinking this is a pretty good indicator of a HAMA. I am resisting any comment. All I will say is that she has never had this reaction. She has never just sat through an infusion and it isn't like she was just handling the pain so much better. There was little pain, if any, and she just skipped right through the infusion. However, Dr. .Cheung ordered a HAMA draw and we should have the results late tonight or tomorrow. I honestly don't know what to pray for so I am just going to pray for whatever is in Sydney's best interest.
Late in the day we made our way back to the Ronald. They had a cookout and Sydney spent her time with the other kids making buttons while I found myself, once again, trying to plan the demise of neuroblastoma with some fellow parents. All in all, it was a pretty good day. Some might think it was a long day but Sydney and I never really noticed.
That's purpose I guess.
4:35 AM 7/26/2006
No HAMA. I haven't even received the tests results back and I can tell you, no HAMA. When one of the children is suspected of having a HAMA they begin by removing the loading dose of Dilaudad. In this way, they can find out for sure whether we are dealing with pain or not. Sydney literally sat through the first half of the infusion. She did not even flinch. I was sure that our days with 3F8 were numbered and our stay in New York was coming to an end. However, it was not that long into the flush that she began to squirm. It was easy to see her struggle on the bed. The hard part was seeing if it was real. Her heart rate did not move one bit. Although she was acting like there was some pain, none of the monitors were supporting that conclusion. I wondered whether the 3F8 was just making her feel strange and she was having difficulty dealing with the sensation. After all, this was the first time she had received them sans the numbing effects of Dilaudad. I wish I could feel what she was feeling. I wish I could understand what was going on. It isn't like they give free samples of 3F8 out to the parents to give it a test drive. Most of what I learn comes from adults and older children who have been through the experience. But, even at that, at best, it is a guess. Regardless, at some point into the flush I was able differentiate that we were really talking about pain. The monitors began to support our conclusions and we were able to officially establish that Sydney was in pain. Now we had to face the challenge of her allowing us to actually let us treat the pain. You have to remember that Sydney still believes that the "Sleepy medicine", Dilaudad, is what causes the pain. I know it sounds funny, but it actually makes a lot of sense. Until yesterday Sydney always received the sleepy medicine before she had the pain so it would be quite natural to see some cause and effect there. Additionally, we have always made an effort to get ahead of the pain my preempting it. In this way we have trained her. My little Pavlov's twerp. Any way, she continued to deny, deny, and deny the pain medication and as long as she was able to deal effectively with the pain we honored her wishes. At some point however, we had to operate in her best interest and against her wishes. With just a few minutes left we dosed her. She achieved almost immediate peace and spent the rest of her stay relaxing in bed.
There is so much that is going on right now I don't even know where to begin. In the past week, I have secretly launched many of the new features in the CNCF website and I have had a core group of people going through it and testing it for me. In addition, I have been meeting with several people about this years Lunch for Life campaign. I am working on some surprises and I need to know that I can pull them off before we begin to put everything together for this year. So, if you are waiting for me to get back in contact with you please be patient with me. I am waiting on a few pieces to fit together so we can get started. I am in the process of meeting with two groups of public relations people to see if what I want to do is even possible. Besides all of that official CNCF stuff I have been doing things that are important to me. Last night Sydney and I met with Patrick Connolly, a dear friend of ours. He is Ryan's daddy. You will remember me talking about Ryan who earned his angel wings last year. I am so incredibly happy to have Patrick back in my life. He was always one of my favorite Dads to hang around with and I also think he will always be one of Sydney's favorites. Some men are good Dads and some are great but very few are tremendous. Patrick is tremendous. I missed him and it was truly great to see him again. Yesterday also found me on the phone talking to another Dad who seems to be in a very similar position as we were with Sydney when this second part to our journey began. Sam, who was diagnosed a year or two after Sydney, has a funky spot in his leg and no one really knows what it is. His Dad, another crusader against neuroblastoma, is searching for answers. I spoke with him for quite a while last night and I can only hope that I provided him with some good information. He is in a difficult and frustrating position. In his situation you want answers and you want them now but there has to be some realization that without drastic measures there may never be an answer, even the experts don't always know. Drastic measures can also come with serious consequences so there also has to be a level of temperance. It is up to him to find the balance that works for him. Neil is a clever guy and I am sure he will find the best path for Sam. I just hope I helped him. Aside from him there are many parents that I have been talking to. This is such a unique place and it is so incredible to be surrounded my so many people that are in this journey. As different as we all are, I am so amazed by the similarities of our journeys.
Well, once again, I have dribbled on with no clear direction. In short, Sydney is happy and so am I.
Purpose, it's a good thing.
4:25 AM 7/27/2006
It is hard to believe that this treatment round is almost over. It has gone by so incredibly quickly. I don't know what it has been about this treatment round that has made it so different than the others but it really has been quite fun in comparison. I know, I know. How fun can putting your daughter through a treatment that causes intense pain really be? Well, of course, I was not really talking about that part. However, she has had less pain during this treatment round. No, the fun par has been being with Sydney. She and I have had a wonderful time together. There has been nothing better than skipping up and down the streets of New York holding hands with her. You might think there is something better than that but you would be completely wrong. I am telling you, there is nothing better in the whole entire world.
Somehow during this trip Sydney has become progressed into a new stage of life. I, on the other hand, have regressed. While she seems far more grown up there is no doubt that I am younger - at least in spirit. I have just had so much fun with her I have not cared about anything else. I guess the best way to describe my recent mentality would be to call it carefree and it had been such a long, long time since I could truly say that I felt that way. It has been a refreshing ray of sunshine and I am enjoying it. So, if you see me walking by with a goofy little grin on my face, just keep walking because even I don't really know whether the elevator is still going all the way to the top of the building.
Yesterday, I received some incredible news about another little girl who is close to my heart. You may remember Annabelle. She was the granddaughter of one of my mother's best of friends. It was almost a year ago that DeeDee and I drove down to Houston to meet with them when they discovered she had a brain stem glioma. Now, if you read my diary you know that neuroblastoma is bad, but I am afraid it barely holds a candle to a brain stem glioma. The outcome is incredibly grim and most kids succumb to the disease within a year. Radiation is one of the few weapons that seem to work and it is a temporary fix at best. Well, Matt and Kelly, the parents, refused to give up. In fact, they have been traveling across the country to Bethesda Maryland to try a cutting edge clinical trial using interferon. Well, to make a long journey very short, the scanned her again yesterday and the tumor has disappeared. There is nothing left but scar tissue. Now this isn't one of those moments that you say, wow, how nice. This event can't even be described by the term "nifty." This news registers on the Richter scale. This is epic. It is the kind of news that never happens, as in, it has never happened before in the history of the world. Simply put, it is a miracle and I am not saying that to be cute. I am not saying it because it sounds good and I am not saying in the way that someone might describe making a hole in one. I am talking about a real life, genuine miracle. My friends, a child was spared yesterday. She is a first and a perfect example of the fact that when all hope is gone miracles still can come true. Thank you God. There is hope.
Now that is the type of purpose I am talking about.
5:17 AM 7/28/2006
As usual, I am in a mad dash to get everything packed and out the door. Sydney's treatment yesterday went well. We spent most of the afternoon and evening playing with her friends at the Ronald McDonald House. I guess I should have been packing instead of goofing off. Regardless, today is our last day of treatment and shortly thereafter we will be going home. I get to see my Dudely, my Ainsley, and my honey today. Yippee.
My purpii are going to be reunited.
5:07 AM 7/31/2006
Home sweet, home! Friday was an extremely long day but we eventually made it back home. The day started out simple enough - I was in a mad dash to get everything packed - but the chaos just never seemed to end. We went to the hospital a bit early. We wanted to be one of the first ones out. They seem to operate under a first in first out system but it also seems pretty dependent on your nurse. We were lucky. We had Danielle and she was ready and raring to go. We went through all of the usual pre 3F8 routines. Finger stick - check, check up - check, hook up her IV check, premeds - check. It went like clockwork and, by about 9:30, 3F8 was dripping into her veins.
The treatment went a little strangely. We had changed up her premed line up a few times during the week. We had experimented with and without a loading dose, with pain and without, and, finally, none at all. Ultimately, we decided on no premed and to start the Dilaudad at flush but for some reason it slipped by and she was giving some before treatment. It really wasn't a problem. I had just hoped we would not have to give it to her because she had a long day ahead of her and I want her to be able to recover as quickly as possible. Sydney did not really have pain until the flush and then it came and it just would not go away. Her pain was different and it was coming from her, well, her "who ha". You know, her girlie part. Not having a girlie part I really had no concept of what she was going through or what was going on. The really odd thing about it was that she was not experiencing much pain in her abdomen and it really all seemed to be focused in that area. She was in intense pain. I had them give another half of Dilaudad but unfortunately that did not even put a dent in the pain. We spread out the pain meds by every 5 to 10 minutes and I had lost count by the time that she finally achieved some comfort. It came in the form of sleep and finally it was over.
As you might imagine, it took Sydney quite a while to wake up from her drug induced sleep. When she finally did wake up she wasn't the least bit happy about it. The Dilaudad had a firm grip on her and was no where near weakening. I could tell, this was going to be a fun afternoon. We made it back to the Ronald at about noon and I made a mad dash to clean up the rest of the room and get the bags packed and downstairs. It only took about 30 minutes to have everything ready and raring to go. Just as I was climbing back up the stairs after the final load of baggage I received an alert on my cell phone. The plane was delayed for an hour. At first this seemed like a blessing. At least then I could give her some more time to rest in comfort. I quickly realized that our real problem was going to be the weather which seemed to be rolling in. There were going to be some strong storms later in the day and it was going to be a race to get out before the really big stuff came in. I made a quick check of the airline online and found out that there were three other flights that were leaving before ours and if we went quickly we might be able to catch one of them. I really did not think Sydney was going to sleep anytime soon so I decided to make a run for it.
It appears that everyone in New York had the exact same idea that I had because once I got to La Guardia airport it became immediately evident that there was not going to be any space. Sydney and I checked our bags and made it through the extremely crowded airport and through security. We stopped by the other flights to see if the had any space. All of the flights were booked full and most had a standby list of at least 30 people. I decided to make Sydney comfortable and just wait in out. In the end our flight would be delayed two more times and it would be 10:30 PM before we made it home and into bed. It was a long, long day but finally we made it home into mommy's loving arms.
The next morning we got to see Graham and Ainsley. We were home. We were a family again. Thank you.
My purpii were reunited.
5:51 AM 8/1/2006
All is mostly well at home. Yesterday the kids went back to school and the parents went back to work. It sounds like a typical day, doesn't it? The only snafus were the facts that Martha, Ainsley's Nanny, was sick and could not show up, Marjorie was going back to Alabama and needed a ride to the airport, and Sydney was complaining about an ear infection and had a doctor's appointment scheduled. I guess we never really ease back into life. We just kind of hit it head on, no holds barred, and with our noses to the grindstone. In the end, Marj watched Squirt until I got home to take her to the Airport and then Squirt went with us to take her to the airport. Then, we got back home. I fed Squirt and then I took her to Mommy's office while I picked up Twerp and Dudely to take them to see Dr. Debbie. In the meantime, DeeDee traveled home from Dallas where she had some appointments earlier in the day. When she arrived Lynley did a Squirt pass so that she could meet Twerp at Dr. Debbie's and to ensure that I wasn't tearing up the place and that I was behaving myself.
As it turns out Twerp does have an ear infection. Once again, it happens to be in the ear that has a tube in it (as opposed to the ear whose tube fell out within 2 months of it being place in there.) This might indicate that swimming and the fact that she continually gets that ear wet could be a problem. I might even go as far as to say that Twerp should be wearing the ear plugs that I bought her whenever she goes near water. Now, being the dedicated and loving husband that I am, I certainly would not tell my wife - "I told you so." I would never ever say "See I told you she has to wear the ear plugs!" because that would definitely not be appropriate. In fact, I am sure the mere fact that I have mentioned that I would not do those things will also get me in trouble so I would really appreciate it if you would not mention it to her. In fact, in celebration of the fact that we are all back together as a family I am going to call this day "Super Secret Don't Tell Lynley That I Wrote About her In My Diary Day." What a fabulous way to celebrate the fact that all of us are back together at home and I am not in trouble?
You see, I tell you these things to get across two points. First, it does indeed take a village to raise a family. We are living proof of that and lucky to have such caring parents and friends to support us. Secondly, you need to have a sense of humor. Some days are good and some days are bad but as long as you are together and laughing you can make it through.
A sprinkle of purpose won't hurt either.
5:21 AM 8/2/2006
There were several stories back in New York that I just never got around to telling. The first was a chance meeting last week at dinner. After treatment, Sydney and I made our way down to the Wicked Wolf for dinner. This was one of those days that she had mastered pain control and had made it through the treatment with little or no pain medication. I found that to make her incredible fun to be around in the evenings but it really put a damper on her appetite. The good thing about the Wicked Wolf is that there is always something there that will stimulate her appetite. As usual, we had brought her colors and she was busy coloring away on some white paper that she had with her. Sydney likes to tell stories while she colors and, for some reason, on this night she was absolutely full of it. You might have to have a child that spent half of her life in a hospital to truly understand how normal this behavior is but she was telling me all about how the blood works in her body to fix her owies. I can only imagine how strange this must sound to others who might be listening in to our conversation. I think it must be strange to here a five year old talking about blood circulating in a body to deliver food and nutrients to owies. I could not help but notice a lady at the table next to us almost choking on her food from laughing.
Now while we are in New York it is pretty obvious that Sydney has something going on. During the weekdays she always has her peripheral IV in and, given the neighborhood we stay in, almost everyone is able to put two and two together. The first words out of everyone's mouth is usually "So, you are going to Sloan Kettering? It is an incredible place." And then, for some unknown reason, they always feel the need to share a story of someone who died from cancer. I don't know what it is about people who meet someone with cancer but they always feel the need to share the fact that they knew someone who died from it. I am guessing it is just a gut reaction and that they are trying to make you feel like they are a part of your world and trying to let you know that you are not alone. I really don't know. But, if you are one of those people that tell about someone dying of cancer to someone who has cancer, STOP IT. Talk about something else. Talk about your dog having fleas - something. People with cancer are fighting for their lives. They need support, compassion, and positive thoughts, not examples of treatment failure. Any way, I digress.
After this seemingly nice lady almost choked on her food from listening to Sydney talk about her blood I felt the need to explain my daughter's rather odd discussion. I told her about Sydney and her battle. As it turns out, she had recently lost her husband to cancer and her apartment to a flood. Now, in contrary to my previous paragraph, I had an almost immediate bond with this lady. We had many similarities. She was an author writing a book about her experience with her husband. I am nowhere near an author but I can certainly understand the therapeutic value of getting your feelings out and down on paper. We talked about our journey's and how similar they were. As it turns out, she too was active in fund raising and was working on some projects with Sloan Kettering. The more that we talked the more that Kathleen and I found that we had in common. It was just one of those rare moments in life where you meet a complete stranger and yet you feel like you have known them for all of your life. She and I talked for quite a while.
As Kathleen and I jabbered away, Sydney just kept coloring. At one point she interrupted our conversation to present Kathleen with a note that she had written. The note was roughly 5" by 7" and included about 5 or 6 lines of letters. Other than spelling her name (backwards again) there wasn't really any discernable message so Kathleen asked her to translate. Sydney said that the letter stated "Anything you want, you can do." Now, I don't know whether Sydney had been listening to our conversation, got lucky, or had some cosmic connection with Kathleen but it was obvious that this was something that Kathleen needed to hear. It was one of those moments that make you wonder if fate really does exist and affirms the fact that we may not be alone and someone up there must be pulling the strings. We definitely needed some eerie music playing in the background. Needless to say, Kathleen was floored. She madly searched her purse to find something to give in exchange and finally settled in on a pocket dictionary that she had carried with her for the last 25 years. Sydney was enamored with the pint size book and has kept it with her ever since. We spent another hour or so as we continued to talk and help Sydney locate words in the dictionary. At one point Sydney asked me to locate the word "twerp." It wasn't in there, yet I know it was a word back then because my mother used to call me by it. Regardless, from that moment on, every time I have called Sydney a twerp she has shoved that dictionary in my face and said "You can't call me a twerp because twerp isn't a word!" In the end, it was a couple of hours in my life that I will never forget. It has been imprinted on me.
Over the next few days our paths would cross in strange ways. I would have chance meetings with people who had met with Kathleen and that dictionary would become a constant feature in our lives. In the coming days there would be many happenings that would just make you wonder.
I guess that is what can happen when purposes collide.
Until the next time....
5:16 AM 8/3/2006
The Dungan five are about to go on a family vacation. I know, I don't think I have said that word in about 3 years but, yes, we are leaving this weekend for a week in luxurious Huntsville, AL. We are not planning on taking any work along with us and, for once, we are just going to try and be as carefree as possible. On the itinerary is a trip to a farm and to a lake and stuck in between are hours and days of activities and mayhem. In fact, the more I think about it the more I realize that this is going to be more of a vacation for the kids and just plain more work for us adults. It is going to be like herding cats. Something tells me that I am going to need a vacation from this vacation. I still can't wait.
Although the kids are all in different stages of life, each of them is at one of my favorite milestones. There is so much that they will see for the very first time and we will get the opportunity to just soak it up. Although Sydney is old enough to have a memory of our last trip to Huntsville she will be seeing and doing things that she has never done before. Her vocabulary is now so descriptive and it will be interesting to hear her describe all of the sights and sounds and how it makes her feel. I don't know when you sat and listened to a five year old tell you about a brand new life experience but I think it is one of the most heartwarming and funniest moments in the world. There is so much excitement and wonder in their voices as they pass through this really expressive age. For Sydney, everything that she sees or hears has to mean something. Upon seeing or experiencing something new she always turns to us to explain what is going on. This is very similar to the story I described yesterday about how her blood goes through her body fixing owies. She is passionate and just listening and watching her expressions as she explains a sensation or a feeling is enough to leave you in stitches. For Sydney, this trip will be a mountain of firsts for her and a novel of short stories for us.
Graham is in a slightly different stage of life. He is torn between his love for Mom, Dad , and Sissy and his desire for independence. In his case there are many things that he will be doing and seeing for the first time and for him it will be a right of passage. For him it is not only that he is doing things for the first time but that he is doing it "himself!" Every new accomplishment is a huge reward and he beams from end to end. It can be simple things that he accomplishes that bring him joy but it is the really brand new challenges that are the real prize. His inner struggle as he combats fear and dependence is written all over his face and there is definitely no ignoring the sense of pride that he wears as a badge of courage when he completes his task. For us, this vacation will be an incredible ride as we watch our son battle for himself. He is becoming our little man and we will be in the perfect environment to watch it unfold before our very eyes.
Ainsley certainly won't have a memory of Huntsville and if she does it would only include sparse memories from inside a carrying cradle. This time she will be front and center in a brand new world. Although there will be moments of excitement for her nothing will be more enticing to her than her Mommy and Daddy. Yes, as all of our other kids will be asserting their independence and learning about all of the wonders of the great big new world, our smallest one will still be reveling in the safety, security, and love of her parents arms. As we are both happy and sad that Graham and Sydney are spreading their wings and becoming more independent we still get to feel the enormous satisfaction and love of our smallest who could care less about the wonders that surround her as long as she is with her Mommy and Daddy. For us we still get to feel the enormous satisfaction of being so incredibly important.
Yes, from my point of view this will be the perfect vacation and I can't wait to see all of them live it. These experiences are very often once in a lifetime.
I might be on vacation but my purpii will be with me.
3:57 AM 8/7/2006
Okay, so 3:00 AM or 4:00 AM probably isn't when you would be expecting to see me write in my diary on vacation. Then again, what would anyone really expect from me? The problem is, I couldn't sleep. Ainsley seems to be having the same problem. She has been up and screaming every two hours all night. I think yesterday did her in and she is having some trouble adjusting. The good news is that we are on vacation and we can take a nap whenever we need. to. None the less, I am happy to report that we are officially on vacation. As of yesterday, we safely arrived in Huntsville, AL.
Everyone seems to be happy. The kids were excellent on the plane. Well, all but for Ainsley. She was maniacal and there is no doubt that we she was the talk at the dinner table of everyone that was on that plane. I am officially documenting this fact so that someday when she is a grown up squirt (as opposed to the little one she is now) she knows that she is never allowed to complain about a screaming baby on any airplane that she ever rides. As annoying and excruciating as any child may be in the future she can rest securely that she had outdone them. We are sorry America.
The rest of the kiddos, code named 1 and 2 for travel safety purposes, are extremely excited just to be here. They spent there first day exploring the neighborhood and all of the nooks and crannies of Mimi and Papa's house. Well, I had best be off again. At some point I am actually going to try and go back to sleep.
I need to conserve energy for my purpii.
6:23 AM 8/9/2006
Good Morning! It is now day 3 of our vacation. For better or worse, internet access has been a little sporadic. I am having to use my cell phone to access the internet and although it usually works perfectly it seems to be having a little trouble here in Huntsville. I guess the good news for the kiddos and Lynley is that I have not been too distracted. The first couple of days have been fun. After the first night we were able to stabilize Ainsley. Other than the fact that she is constantly moving in one direction or another she seems to have gotten past her first day jitters. She is keeping us running. I am thinking about hooking her up to a bungy cord and attaching it to the center of the room.
Graham has been perfect. The only challenge we have from him is that fact that Ainsley constantly taunts him. Yes, like his father, he has been whipped into submission by the older females of the house. However, he is not ready to give in to a chicky half his age. He is standing firm. Unfortunately, Ainsley, who finds great enjoyment in torturing the boy, often finds herself feeling the worst of his wrath. Rarely do violent outbursts ensue but you just never know when she will finally push him over the edge. The poor boy will eventually have to give in and submit but I have to admit, watching with what little man I have left it me, there is some glimmer of hope that he might actually win the battle of the sexes. What can I say I am hopelessly hopeful.
Sydney, well, where do I start? I was hoping that this would be one of those easy going diary entries but I have to admit that I find myself a bit jittery. The first two days seemed to go pretty well. On day 1 we visited the Space and Rocket Center. They really enjoyed the play ground outside and they found the toys in the gift shops to be phenomenal. They really weren't all that impressed with all the rocket and space stuff in between but I guess that is probably a lot to expect from a 5 and under crew. If it counts I was impressed with everything that I saw but a little depressed by the lack of explanation. There are so many really cool rockets and missiles and space stuff but there was really very little to explain what anything was. It was as if someone went through with a label maker to tell you what everything was but they forgot to mention why it was important. I have to admit the x745J2r was an incredible piece of machinery it clearly fit into the H34e and I am sure it is really important but if you want me to be excited about it I need to romanced a little bit more. I need to know why these parts are important. Again, it was very cool but it would have been far more interesting if they had signs to explain what all of the cool stuff was. At best we occasionally find a one page typed description of an object which was attached to a stand with push pins, yet, they were few and far between.
Yesterday, we went to Cathedral Caverns. It was really pretty interesting and far more than I was expecting. There were some truly incredible rock formations. Even the kids seemed mesmerized. The end of the tour would leave us all with a foul taste in our mouth and it had nothing to do with the tour. Sydney was complaining of hip pain and it made all of us cringe. It is amazing how quickly you can take a carefree vacation and replace it with sheer terror. During the 45 minute drive back to Huntsville Lynley and I would go over ever possibility in our heads. Could the pain be from the seat belt? Could it be from growing pains? Will the Tylenol control the pain? Is it a good sign if it does? Is her underwear pinching her? Did she fall and hurt it? What is going on?
Sydney was clearly in pain and although she may have been playing it up a bit there was certainly something going on. By the time we got home she had stopped complaining and whether that was from the Tylenol or from the fact that it was not as bad as it had seemed we simply do not know. She took a nap in the afternoon and we are happy to report that she has not mentioned her hip again. Quite frankly, we never want to hear her mention the hip again. Regardless, we are watching her very closely and praying that it does not rear its ugly head again. It is moments like these that take you back to that point of not being able to breath.
Well, there you have it. I wish it could have just been happy moments but, unfortunately, the reality of our lives is ever present. Deep breaths... After all, this is a vacation isn't it?
Purposefully watching...
6: 08 AM 9/11/2005
Two more days have passed and, as anticipated, we have had a wonderful time. Those days were packed with a trip out to the McCurdy's farm and to the Scoggin's lake house. Sydney's hip pain has disappeared but the next day it was followed with pain throughout her right leg. I am pleased that the hip pain did not recur and that yesterday we did not see any pain but I still don't feel like we are quite out of the woods yet.
We had a blast at the McCurdy's farm. Sydney and Graham could not have been more excited but for completely different reasons. Sydney was glad to be there to see all of the animals. She watched the cat fish in the pond and she walked amongst the cows, horses, and pigs. Her favorite past time was torturing (I mean loving) a baby guinea. She and Lynley even spent their time riding Coco, their favorite horse. Graham was really unimpressed with all of the farm life but was enamored by a tin fire truck pedal car which he spent our entire visit in. Just to think, we traveled half way across the country. We took them to a farm and my son chooses to sit inside a toy car just as he would had we been at home. I guess I should be glad. He could have traveled all of this way to play with Barbies. It seems there is a silver lining to every cloud.
Yesterday we went out to the lake to visit some friends of the Fowlers. They went out of their way to make us comfortable. The kids had a blast until we were forced to an early retreat due to weather. We spent the day swimming, riding wave runners, collecting shells, playing in the sand, and of course, fishing. I even caught a large mouth bass which almost qualified as bait. Sydney named it Goalfi and carried it around in a bucket full of water for the better part of an hour. In the end she released it back into the wild. All in all, we had a great and relaxing time. It truly felt like a vacation.
I was really pleased that we did not see any signs of leg or hip pain yesterday. It gave both Lynley and I a glimmer of hope that this was not something more sinister. We are still only breathing with what feels like half breaths but the longer we go on without a recurrence of leg or hip pain the better we will feel. I have sent an email to Dr. Eames and I hope to hear back from here today. We have one day left in our vacation and then, assuming planes are still flying, we will be heading home.
We are still purposefully watching but we are breathing a little better.
5:26 AM 8/14/2005
Home, sweet home! The rest of our vacation flew by. On Friday we went to the botanic gardens and visited the butterfly sanctuary. Sydney and Graham had a blast. Ainsley had a good time as well but seemed in a quandary as to why they were called butterflies. As far as she was concerned they did not taste like butter (yes, she did try to eat a dead one) and they did not look like a fly (from her experience she knew they did not taste like them either.) After exploring the butterfly exhibit the kids made their way to the gift shop and then finally out to the children's gardens. I must admit. I was pretty impressed with the children's gardens. I was surprised to see that much thought and care put into a series of botanic exhibits for children. You know, for the most part, they aren't really plant enthusiasts. There must have been 9 or 10 gardens and all had a special theme. You could learn something new in every garden and most had some type of activity that was part of the experience. Even the gardens that were relatively less exciting were armed with sprayers to keep the patrons cool and the kids down right soaked. This was ultimately our downfall because by the end of our perusal we had two drowned rats. We dripped our way back through the entry hall and back to the car were they were plucked from their respective strollers, stripped, and placed into their car seats. We raced the "nudeymobile" back to the house were we dressed them again, fed them lunch, and then put them to bed for their afternoon naps.
On Saturday we came home. I am happy to say that the travel went smoothly. I am not going to brag about the fact that the kiddos slept the trip away in my aisle of superior parenting while they may noise in the row behind (Lynley's). But, after our experience on our trip to Huntsville, I have to mention it. The security changes at the airport were not that bad, in fact, we sashayed right through. The screening went smoothly and the kiddos all behaved fairly well. Sydney was surprised at the security and was asking a ton of questions which we found hard to explain without scaring the wits out of her. She is smart enough that telling her that they are there to protect us only leads to the question of "Why?". Ultimately, we just tried to focus on what the security screeners were doing and avoided defining the term terrorist for the time being. I just want my kids to enjoy life a little bit more before they have to worry about such atrocities. Kids should not worry about these things.
We had gone about a half hour early just in case and ended up having to entertain them for about an hour in the airport. This was the perfect opportunity to wear them out and that we did.
We arrived home on Saturday afternoon and before we even dawned the door Lynley was hard at work at her "honey do" list. Yep, it did not take long before I was back in the salt mines. Before the weekend was over I would rehang three doors, clean out the air conditioners, replace the filters, and install new door locks. You would think Lynley would have realized that the one blissful Sunday was my only shot at a vacation. After all, she has three kids too. But nope, nose to the grindstone, she put me to work. Oh well, maybe next year I will get a day off.
When you have a purpose you can be busy and not even know it.
5:06 AM 8/15/2006
I am not going to lie. I am scared. I would love to be talking about Sydney's new school and the fact that Lynley and I went to our very first parent's night. We were ecstatic but our enthusiasm ended abruptly. Our night transformed from the sheer delight of meeting with Sydney's new teachers and investigating her new hunting ground to complete silence and emptiness. On our way home DeeDee, our babysitter for the evening, called to say that Sydney was up, out of bed, and complaining that her leg hurt.
We have just gone from an isolated event of leg pain to recurrent leg pain. To me that seems like all of the difference in the world. You see, when Sydney has leg pain it makes me feel like all of the air has been squished out of me. For minutes to hours I am completely empty. I am almost devoid of feeling. I walk around as though I am tip toeing on eggshells. I am waiting for the other shoe to fall. I am waiting for a sign. I am looking intently. Will the pain go away? Will I be able to find out the cause? Can I see something? Please, tell me it is not neuroblastoma. It is nervous apprehension. It is fear.
Eventually the pain will go away. The way I deal with it is to tell myself that, as long as it does not recur, it must be something benign. It must be okay. She must have sat funny and it fell asleep. It must be just a growing pain. She must have bumped it or fell on it. You know, the simple benign stuff. As long as the pain does not come back again, it must be okay.
Once I convince myself, I can breathe again. I can lead my family. I can step back into the world and be something other than that mindless zombie trapped by fear.
Yesterday the pain recurred. So, now, I sit silent in fear. I am not quacking - I only wish I could. I am silent. I am scared. I am empty.
Sydney's left leg hurt last night. She described that the pain was coming from the inside. Almost as soon as the words left her mouth she was asking for the little purple pills (no, not Viagra - Tylenol). She really likes the little purple pills. We told her the little purple pills would not work for this type of pain. We told her the little purple pills only worked for pain in the knee. We gave her liquid Ibuprofen instead. Later that night she said her knee hurt. Could her addiction to the little purple pills be the culprit?
We have just arrived back from vacation. We really did not have any one and one time with any of the kids. As you can tell from my "honey do" list, the objective of the weekend was not nurturing the little ones' individuality. Could she be craving attention? Was this a ploy to get to go downstairs and cuddle with DeeDee and, eventually, her parents. Could her need for attention be the culprit?
She plays the "help" game. I am not going into details to protect her dignity but it includes moving her hips and legs. She does it constantly when we are not looking and seems to be a favorite night time activity. She can get quite a workout. On several occasions her legs have fallen asleep and each and every time she has complained of the leg pain before, the help game has preceded the pain. Could she be stressing her leg muscles? Did she pull something? Could the "help" game be the culprit?
There are a million things it could be. It could be the fact that she fell on the leg earlier in the day. It could be growing pains. It could be a bump or a bruise. It could be something she did in the park. It could be from crawling on the floor. It could be anything.
And yet, I still sit silent in fear. It only matters if it is one thing.
I am scared.
Scans are next week.
Purpose give me strength.
5:24 AM 8/16/2005
The good news about yesterday is that it seemed no worse than the day before. Lynley came home at lunch and ended up meeting Sydney, Ainsley, and Martha at the park. One of the first questions Lynley asked Sydney was whether she had any "owies" during the morning. Sydney told her that her that her left leg hurt a little bit while she was running around earlier. Later I would ask the very same question and she would deny she had any pain and then tell her mother that she was talking about the day before. There is no doubt in our minds that Sydney has caught on to the fact that we are interested in her pains. That little realization has complicated the matter.
Fact: Sydney will fake pains for our attention. In fact, on many occasions, I can manipulate and predict where the pains will occur within her body. For instance, if she comes to me and I kind of brush off the pain that she is claiming to have and I tell her it is not serious, the next time she will come with a pain that is elsewhere. If I tell her pain in her right knee is serious then you can pretty much bet your bottom dollar that the next time I hear from her she will have a pain in her right knee. Sydney can clearly be manipulated for attention and for reward (the little purple pills).
So where does that leave us? I only wish I knew. It is a very complicated scenario. Lynley and I both believe that, at the very least, Sydney had some leg pain that spawned all of this off. It may have been something or it may have been nothing but we are pretty sure that at some point she had real identifiable leg pain. Everything that has occurred since then is blurry. She may or may not be having real pain. We just don't know whether ewe are getting to the truth. As much as I love and respect my daughter the fact of the matter is that five year olds tell lies. They tell lies to get whatever they want and when they aren't lying you can be sure the are off somewhere honing their skills. Unfortunately, I think it is some kind of right of passage and there seems to be very little we can do about it. What it has left us with is very murky water and I don't believe that there is any real way to find the truth. The only way we will know anything is with scans and those are murky as well.
If Sydney had pains at the park yesterday I would be more concerned. If she was fibbing about the pain then I would be far less concerned.
It isn't an answer but it is hope.
It's my purpose.
5:40 AM 8/17/2006
In desperate times we sometimes do desperate things. Yesterday was just such a time. To be honest, I still feel guilty. Nobody ever said it was going to be easy to be a parent and, if there is one thing my father taught me when I was growing up, it was that life was not fair. One of the good things that comes from this realization is that it makes doing things you don't want to do pretty easy. Once you have succumbed to the understanding that no matter what intentions you have and no matter how hard you try sometimes life just doesn't go your way it becomes easy to do things that may not work out. You understand that the only risk of trying something new is failing. There is no risk at not trying because that always ends in failure. This is one of life's little trinkets. Life is not fair. Try your hardest and hope for the best. That is just life.
It is with this theory that I decided to deny Sydney's leg pain. After all, what was the worst that could happen? Yes, she would have leg pain for a little longer without the precious little purple pills. But, other than that, what really was the cost? I did not really think that this was the type of thing that could leave an emotional scar and I had to know.
So, after I put the kids to bed, like clockwork, I heard the door creak open. Sure enough, it was Sydney coming down the hall. She wasn't limping but she was holding her thigh. "Daddy my leg hurts." she said. I looked at her and that is when I did it. I said "No, it doesn't, go back to bed. I know you just want the little purple pills. You don't have leg pain." She made an effort to mount a defense and then elected to say "Okay" and then turn around and go back to her bed." I snuck back down the hall to listen at her bedroom door. Sure enough she never even mentioned her leg hurting and instead she went right back to playing and giggling with Graham. Either she was faking it or I just cured neuroblastoma and leg pain by sheer will.
Later in the evening she would try the very same thing with her mother. Lynley would try the exact same tactic that I had used and she ended with the same very answer. Sydney then went to sleep and we never heard another peep about it.
I still feel guilty and I realize how lucky I was to be right. What if she put up a bigger fight? What if she did not cower to our obviously superior parental intellect? I don't know. I got lucky and I would never say that I feel relieved right before scans but I will tell you that I feel better. I was able to take a breath today.
Today also holds some incredible significance in Sydney's life. Today she starts her first day of school at Southwest Christian School. With all that has been going on with Sydney's leg pain I really haven't had the opportunity to focus on what an incredible experience this has been for us. On Monday night we went to the parent's open house. On Tuesday we spent the day scrambling to get ready and yesterday we took Sydney to "Meet the Teacher Day." Sydney was incredibly shy and she never really warmed up to the teachers or her new environment but there is no doubt in my mind that it was because of all of the people in the room. I am confident that today, her first day of school, will go well for her and she will fit right in. She just needs to meet school on her own terms. By the end of the day I bet you she is in love with her new school.
Well, I had best be off. I clearly have a full day ahead.
It is so nice to have a purpose.
6:09 AM 8/18/2006
We successfully made it through our first day of school. It started off very shaky. Almost immediately, as we dawned the door, she morphed into this squeamish little shy girl. It wasn't Sydney. It wasn't Cybil. In fact, I really don't know who it was. Regardless, Lynley and I figured that we might make a quick entry and exit. If experience told us anything, standing there and coddling her would not be helpful to her. We handled it just like a band aid - one quick fluid motion. We were in and out. We knew the sooner we left the sooner she would recover. There was no reason for us to hang around and allow her to suffer more. Like many things in Sydney's life the thought of what was going to happen was far worse than the reality of it. I felt like Crush from the movie "Nemo." "Hold on, let us see what squirt will do."
I really wasn't worried all day. We have now been through these first enough times that I know Sydney will do just fine. A little shyness at school is not even a mole hill in comparison to the mountains of challenges that she has faced in life. I knew that we just had to let go so that she could succeed. I knew she would rise to the occasion.
Sure enough, she did. Sydney had a great day. As soon as we left the room in the morning she recovered and she spent the rest of the day making new friends. When asked she still says she likes her old school better but I am sure that will change relatively soon as she gets used to her new environment. That isn't to say that where she was wasn't a great place. It is just time for her to move on.
This weekend will still be a nervous time. On Monday morning Sydney will have her marrow aspirate and biopsy. Sydney is still so hard to gauge and really don't have any clue what reality we are dealing with. She continues to complain about leg pain every night before bedtime. Imaginary or not, it seems to go away with a banana. We have done away with the little purple pills for the time being until we can resolve what is really going on. Well, I had best be off. There is a mountain of work to be done and I have got to get going.
Here is hoping to a nice quiet weekend of purpose.
4:56 AM 8/21/2006
Here we sit. The weekend went fairly well but it wasn't nearly as exciting as I hoped it would be. I had hoped it would be really meaningful and memorable but, to me, it was just another weekend. Least importantly, it was more time to think and worry. I know Sydney has been faking "some" pain but I am still frightened. This whole ordeal started with pain that was real and even if in ended in a sham it still makes me wonder. Lynley is petrified - probably more so than I. But, with her, it can be difficult to tell. She has this habit of believing the worst will happen. It is this "If she thinks it will happen then it won't" syndrome. I am not poking fun. That is minor compared to the wierdness I relive to keep neuroblastoma from dawning our door. In fact, I have to drive the same way to the hospital every time for scan week so that I don't upset the cosmic karma. I have been known to turn around when I have gone a different way and start all over. (Okay, maybe I am not known for that but I have done it.) In fact, I do all kinds of stupid things to protect our world from neuroblastoma. I still wear the hospital bracelet from when Sydney was diagnosed in June of 2003 because the only time that it has come off was in October of 2004 when we had the questionable relapse. I refuse to be confident about Sydney's health at anytime because the times that I have been confident she has been diagnosed with cancer and I can tell you for sure that it is usually when things are going really good in life that bad things happen.
I know, it sounds crazy doesn't it. I don't know that I really believe in any of these things. I know before I was touched by neuroblastoma I was never this superstitious. In fact, when I was at a somewhat younger and nimbler age I actually played professional golf and I think my only superstition was being not superstitious. By the way, you won't ever find a more superstitious crowd than that of golfers. Yikes, they are scary but that really isn't the point. The point is that I do all of these dumb little things that I don't really necessarily believe in because they make me feel better. It makes me feel like I have some control is this incredibly random and chaotic world.
So again, here I sit. I sit wondering if this was our last night of peace before falling back into the roller coaster world of neuroblastoma. Is this the last time I will believe that this monster will not win? Will I find hope again? Will I ever feel normal again? Right now, this second, is this the last moment that I will feel whole again? Was that our last weekend? I hate these questions and yet, as usual, I just can't keep them flooding my mind.
Today will be a long tough day. Sydney and I will go to the clinic at just after 8:00 AM and Mommy will be there shortly after she drops Graham off at school. From there we will have a checkup and get ready for our procedure at 11:30 this morning. I really don't know when we will have an answer. I imagine it will be tomorrow but we will all be hoping to hear that she is clean today. If we do, you can bet that I will post it.
Well I best be off Please say a little prayer for Sydney today.
We have a purpose!
4:38 AM 8/22/2006
I still don't know anything and my state can be identified by my nervous energy. I expect that we will probably know something this morning. Yesterday went well. Sydney handled the whole process without missing a step. We arrived to find out that our beloved Candy, one of the nurse practitioners at Cook's, is moving to greener pastures. She has been a big part of our life at Cook's and we will miss her dearly. She is moving to Austin to be closer to her family. We can certainly understand that but we will miss her dearly. The rest of the morning really went off without a bump. We spent the majority of our time with Sydney in the playroom at the clinic and I spent the bulk of my time pouring coffee down my throat.
For the most part, Lynley and I were pretty silent. We really did not talk much. I think that is fairly typical of our scan jitters. Lynley and I are a great team but it is amazing how differently we deal with worry. In this sense we are almost complete opposites. Yesterday's description was truly the tip of the ice berg. Lynley assumes the worst and I hope for the best. The funny thing is that we both think that this is the method to achieve the best result - as if our wishing and wondering has some type of effect. Never-the-less we both support each others coping method and avoid discussing the subject of our worry. We both know it is there and our opinions on what "fixes" it is diametrically opposed. We both know how we feel. It really doesn't need words. We just give each other our own space to deal with it as best we can.
We do talk but it is usually off the subject of the scans. We talk about the what ifs and we both prepare ourselves. Sometimes the nervous energy gets the best of us. Take yesterday for example. I don't know that it is necessarily appropriate but we both thought of it at the exact same time. We were sitting in the waiting room waiting for them to come take us back to surgery. Sydney was coloring a piece of paper with a green marker when Lynley and I made eye contact. At the same exact moment we both looked at Sydney's tushy and immediately knew what had to happen. I don't remember who vocalized the idea first but the next thing I knew I was down on the ground writing a secret message to Dr. Eames on Sydney's tushy. Lynley and I were like two school kids giggling away when Carla, one of our favorite nurses, came in to get us. We were caught with our pants down so to speak. Lynley and I continued to act like we swallowed canaries as we ushered our little princess back into the operating room.
The surgery suite was packed but Sydney got into the swing of things pretty quickly. She knew many of the faces and was already "practicing" breathing into the mask within a minute of our arrival. Quickly we gave her a kiss and slid back out the door and off to the waiting room. From beginning to end it took Dr. Eames about 40 minutes to get her sedated, place an IV, draw labs, drill four holes into her hips, and bandage her back up. She then made her way out to the waiting room where she spent a good 30 minutes discussing Sydney with us. I don't get the impression that Dr. Eames thinks the source of these pains is necessarily neuroblastoma. She really dug into our experiences and helped us get come up with a game plan to see if we could get down to the bottom of this. Later this week we will also take some plain films of the hips and legs so that we can long for thinning or anything that could contribute to any pain. Secondly we will probably be scheduling Sydney with someone to evaluate her emotionally to help us address this from a psychiatric point of view. We still know some element of this is her need for the little purple pills or attention and Lynley and I just don't know what the right answer is. Perhaps, someone with experience could better arm us with the tools to get to the bottom of these pains. Anxiety could also be a culprit here. We just want to make sure that we are doing the very best we can for Sydney. As I said last week, I can pretty much manipulate her into saying that her pain comes from anywhere that I want to but is that really proving anything? Is she avoiding honesty because I am manipulating her into it? Are we, as parents, adding to the problem in our desperate effort to get to the truth? We just don't know and Dr. Eames suggestion to get the pros involved is a great idea and, yet, another example of how much she cares. Nobody knows all of the answers but "we" as a team will get Sydney through it.
It is nice when everybody has a purpose.
4:49 AM 8/23/2006
Long deep breath - now exhale. Did you feel that? That is what exhaling feels like. I finally figured that out yesterday evening. I had forgotten. For the last couple of weeks I have wandered around life unable to exhale. I felt a lump in my throat and I always felt like I was swallowing a bubble. I have survived on shallow breaths each less sure of itself than the one before. Then, last night, Dr. Eames called with the news. Sydney's marrows were clear. We are still waiting on the results from the bone biopsies but it is far easier when we know the marrows are clear. I can breathe again. I know it sounds like a broken record but it isn't over yet. We still have the CT and MIBG to get through tomorrow but, for right now, this moment, we are beginning to feel better.
As a side note, the night before last we alleviated some of Sydney's pain with the little purple pills. After all, she had four holes drilled into the bones on her hips. We figured it was the least we could do. Sydney is lucky when it comes to pain associated with the bone marrow aspiration and biopsy. She rarely experiences any pain at all and what little she does can usually be nipped in the bud pretty quickly with a little Tylenol. We usually give her a little right when we get home from the hospital and then we follow it up before bed time. It is a system that seems to work pretty well for Sydney - except when she has figured out how to manipulate us.
Last night as I put the little twerp (and I use the term lovingly) to bed she began to writhe in pain. It wasn't just a little pain. In fact, had I not known better I would have assumed she was giving birth. Within seconds she was begging for the little purple pills. I told her it was the wrong kind of pain for Tylenol and so she picked another spot to hurt. That just made me mad. I became stern and let her know that lying was not tolerated and I did not appreciate her faking the pain. In all honesty I don't think my talk did a darn bit of good but she did stop crying out in pain if that means anything.
I guess I should consider ourselves lucky. After everything that Sydney has been through - high dose chemotherapy, a stem cell transplant, radiation, oral chemo therapy, and years of immuntherapy requiring mountains of narcotics - the only uncontrollable addiction that my daughter walks away with is to Tylenol. I suppose things really could be worse.
I don't know the answer but I can handle this. I've got purpose!
5:30 AM 8/24/2006
This will be a relatively quick update. We need to be at Cook's at 7:30 AM this morning for another round of scans and tests. This morning she is scheduled for the MIBG and the CT scan. We are still waiting to hear back on the bone biopsies and the x-rays that we took of Sydney's legs. We are not anticipating that we will hear anything new but are anxious to hear the results.
Sydney had a pretty good day yesterday. The peripheral IV placement was a little hard on her. For some reason it seems to be getting harder and harder instead of easier and easier on her. You would think that, with everything she has been through, this would be a relatively minor hiccup. The opposite is true, however, and it seems like it is getting harder and harder. From my perspective, I can definitely tell that she is developing more and more stress with every IV. She is generally such a trooper and it is hard to see her have such a difficult time with the procedure. I haven't yet figured out how to turn this train around but I am sure we will find an answer.
Well, I had best be off. It will be a busy day of scanning and waiting with purpose.
4:47 AM 8/25/2006
This is one of those great news / bad news moments. Dr. Eames called yesterday afternoon with the great news. Sydney's bone marrow aspirates and biopsies came back clear. Her MIBG and CT scans came back negative and the x-rays of her hips and legs came back perfectly. Sydney continues to show absolutely no signs of neuroblastoma anywhere. So, there you have it, the great news. Sydney has no evidence of disease. This lead to my next point to Dr. Eames - "So, what are you telling me is that my daughter has a drug problem (addiction to little purple pills) or a mental problem (pain response to get little purple pills)?" In short, Dr. Eames said "Well, yea." But that was okay, that I can deal with.
Wouldn't that just figure? Here I am "SuperDad" and all and our last scare has come down to a genuine parenting problem. Sydney's pain has now extended straight from her leg and implanted itself smack dab onto my rear. You know, I did not feel nearly as bad of a parent when I could blame this pain on neuroblastoma. Sure the outlook was grim but at least the source of blame wasn't staring at me in the mirror. When the pain isn't caused by neuroblastoma or some strange late effect there is a great rush of relief but almost immediately following that is the sudden rush of realization that your daughter is lying to get some drugs. Okay, okay. So she isn't a drug addict. She just happens to like the flavor of grape flavored Tylenol. But still, my sweet little princess whom I bore and I cuddled and I held through years of chemotherapy and immunotherapy. Whom I coddled. Whom I stayed up sleepless nights looking over. Whom I did all of that great Daddy stuff with is now looking lovingly into my eyes and lying to me to get some grape flavored Tylenol.
Yes, I have a five year old Tylenol junky. There! I can say it.
I am sure that there is some 12 step program for this but I think I may just handle it on my own. If we can beat back neuroblastoma we can certainly handle this.
Last night she had the nerve to tell me that her leg hurt before she went to bed.
Humph! Kids!
Ain't purpose grand!
8/28/2006
I could say that we had a great weekend but now it would sound like a lie. The problem was that we really did have a great weekend until about 1:00 AM this morning. Poor little Dudely. The little man has been up and throwing up every thirty minutes ever since. We moved him into our bedroom with us and it is a little pungent to say the least. His body appears to be rejecting things from both ends. As I type I lay here beside him and I know that any minute his little insides will start to turn and he will awake. He is at the point of just heaving and it is so sad to see his little body wretch. Oh, there he goes again.
I have to run. I have a purpose, not a clean one, but a purpose.
6:41 AM 8/29/2006
This will be another relatively short update but I think we are on the road to recovery. My little Dudely continued to throw up until about noon yesterday. I stayed home with him and worked while he slept between retchings. Eventually we were able to get some Vistaril in him and his stomach eventually subsided. He spent most of the day on the couch and little by little we nursed him back into the land of the living with some Pedialite and crackers. I love my kids equally but I have come to learn that I don't appreciate puke with such a lack of discrimination. I have never had a problem when Sydney was sick. To me there is something so much cleaner about chemo puke than the vile, nasty, virus-infested barf that my dear son spewed. I must admit I found myself joking back "the taste" a few times yesterday. Regardless of my disgust, I never once forgot about my little boy who was having a much tougher time at it than I. I had a lot of time to spend with my son yesterday. We had some true quality time together. It is rare in this household that we get the opportunity to spend a lot of one on one quality time in one sitting with each of our children. So, in that sense, it was a lot of fun. Both Graham and I felt like we came through a long battle with each other and we won. I would sit through another day of pukiness with my son to come out of it with that feeling again but I have realized that I don't have to. I just have to choose to.
Sometimes we forget to choose our purpose before it chooses us.
4:54 AM 8/30/2006
Graham is slowly on his was to a full recovery. We kept the little Dudester home from school yesterday as a precaution but I think that today he will be ready to get back into the swing of things. I would not say that he is 100% but I don't think he is contagious any longer. Hopefully, with a good rest last night, he will be back to his spunky self.
Sydney is doing well. She has completed two days of school this week and she just absolutely loves it. She has two teachers whom she absolutely loves and she is starting to really get to know her new friends. I think her teachers are still a little bit gun shy. Don't get me wrong, I think they are excellent teachers. I just think Sydney may be one of the first kids they have really ever spent time around that had such a heroic past. They seem to be treating her with kid gloves. It is totally understandable. They don't yet know Sydney well enough to know her limits. And, as we all know, Sydney (like any 5 year old kiddo) can be all too adept at taking advantage of every opportunity. After all, that is how she has survived neuroblastoma, isn't it? I have been waiting for us all to get to know each other a little bit better before we all sit down and talk to each other. It is sweet that they are so gentle and caring with Sydney. I can tell that they truly care and they want to do everything possible that they can for her. I want Sydney to be special but not "special". I want her to be normal just like any other kiddo and in order to get there she will have to be treated just like any other child. With everything that she has been through it is real easy to give her the benefit of the doubt. It is real easy to tell her that she can just sit down if she doesn't want to play. It is so easy to just help her a little bit. Trust me, I understand wanting to coddle her but, if we are truly building little people here, we have to give her the tools to survive life. Her teachers will be major players as we shape Sydney and get her ready for life outside of the hospital walls and I can't think of a better team to do it.
I am glad to see we all have purpose.
5:06 AM 8/31/2006
Yesterday marked another milestone in Sydney's life. Sydney was vaccinated. I was sitting there looking at her shot vaccination record. The last date on her card was from back in 2002. It is strange how things like this will set you off. I took a moment to look back and reflect on all that Sydney has been through. Wow, she has been a trooper and really all there was to show for it was a gap on her shot record. I realized that the only thing that really gives our journey any meaning is the fact that we chose for it to. In a way it made me feel empty. I know that sounds strange but I did. This has been such a major monument in our lives. It has been all encompassing. It has defined who we have become and who we will be. It isn't just a gap in time.
As I look back on our life I am still so thankful for many of the byproducts that have come from this roller coaster ride. After 3 years I still maintain that I am a better person because of the experience. I still hate the fact that Sydney got cancer. I hate that she had to suffer and I hate the fact that we still live in fear of this beast. However, I have a deeper more meaningful appreciation for my family and friends than I ever could have had before. I love more. I feel more. Yes, I am more of a man than I ever could have been had we never been slashed by this double edged sword. The big "C' gave me the gift of my family. I realized that my family was the reason I was here. They are my purpose.
However, they aren't my only purpose. Throughout this process I discovered that this whole disease was my purpose. Believe it or not, it empowered me. I discovered that I could do something about it. I don't yet have the power to cure this disease but I do have the power to comfort others that enter this world. I have the power to educate and to raise awareness. I have the power to hunt for the cure. I have discovered that I can make a difference in others lives as well. As powerless as this disease makes you feel I have found a way to feel power. Searching for the cure not only gives me the self satisfaction that I am doing something meaningful for my family but it also gives me the satisfaction of helping others. It feels like important work and I am empowered. Here I can make a real difference. One of my goals when I first started this diary was the hope that I could help others through this process, that I could make this journey somewhat gentler for those that followed in our footsteps and everyday I try to do that. I learn more everyday but I think I am having small successes. Others know they aren't alone. We are providing hope.
It isn't just a gap in time.
It is a purpose.
4:41 AM 9/1/2006
Grammie, my grandmother and the kiddos great grandmother, is here to visit and celebrate her birthday (which happens to be today BTW.) We love it when she is in town. The kids all love the syrupy sweetness that seems to drip off of her. That is the great thing about grandmothers. They get it. They have lived long enough to see it all and experience life. They know what is important - family - and it becomes contagious when they are around. I can't speak for other grandmothers but I sure feel whole when my Grammie is around. They are warm and enveloping in love.
As a treat I always like to bring Grammie with me as I pick up the kids from school. This gives her a clearer picture of our day to day lives and what the kids are up to. Plus, it gives us 20 or 30 minutes of quiet car ride to talk before the chaos begins. It is one of my favorite times. Yes, I am a 35 year old man and like my kiddos I still feel giddy when I get to see my Grammie. That is the beauty of grandmothers - you never outgrow them.
Yesterday was no different. At about 2:00 PM I woke Ainsley and plopped her into the car. We then picked up Grammy and headed to pick up Sydney. The car ride was nice and we had the opportunity to chat a bit without too many interruptions from my little back seat driver. Ainsley was still a bit groggy and thankfully her jabber box was still asleep. Sydney was happy to see her great grandmother there to pick her up from school but, as usual, kept us pretty much in the dark as to her daily activities. Despite my thorough inquisition I still have no idea what she did at school yesterday.
Our next stop was to Arborlawn to pick up Graham who had just completed his second day of school post sickness. The report from his teachers was good and with the exception of the green playdoh colored poo that he greeted me with at the door everything seemed on the up and up. I told him that his Grammy was there to see him and he jumped for joy as we raced back to the car to see her. Once inside he grabbed his juice and I buckled him in.
Within about a minute we were off and driving again. Twerp noise and jabber filled the car. Then all of a sudden out of my rear view mirror I could see Graham starting to spew. Within seconds he was full vomit. It was a gusher and looked like a scene straight out of the exorcist. I was helpless and all I could do was sit and watch in horror in my rear view mirror. It was warm in the car and now it was no longer Grammy love that was enveloping the car. It was now the smell of things that I cannot even begin to describe. Graham was covered in vomit. The car stank and I just raced to get us all home quickly and safely. Sydney felt like she was at the scene of a car accident. The scene and the smell was enough to make her vomit but she just could not keep herself from looking. As much as she tried she just could not look away. She used this opportunity to describe the scene to us in the front seat in gory detail.
Eventually we made it home. I cleaned up Graham and the car and I am happy to say that there weren't any further incidents.
I sure hope Grammy enjoyed her personalized tour of our world.
Sometimes purpose stinks.
4:05 AM 9/5/2006
I guess I have to start this weekend back on last Friday. It was Grammie's birthday and we celebrated with nothing less than a trip to Sydney's school to eat with her class. I picked her up from DeeDee's a bit early so that we could stop and get some food on the way. I was hoping to be a few minutes late. The teachers had warned us that the first ten minutes were pretty chaotic with all of the hand washing and lunch preparations. I had a feeling that this was going to be chaotic enough and we did not need the extra fun to get our meal started off. As we arrived there were still a few kiddos scrubbing up but most had made there way to their tables and were in the process of emptying their lunch boxes.
We were greeted and ushered to Sydney's table. It was a round table with five miniature chairs. Everything was Sydney sized and although getting into the chairs was not necessarily a problem I knew getting out of them would take an act of congress and some deep knee bending. Regardless, we were committed and down we went. Sydney was extremely excited to see Grammy and spent her first few minutes climbing all over her. I, on the other hand, sat in a daze as the hustle and bustle buzzed around me. There were kids getting their lunches and unpacking them, there were kids scrambling to find their seats, there were kids washing their hands, and the teachers were racing back and forth amongst the gaggle of pint-sized little adults assisting them with their preparation. All was chaos, except for the little boy, John, who sat to my left. He just stared at me - stared and stared.
Almost immediately it became silent as Miss McPheeter called them to order. She asked Sydney to introduce her guests. Sydney did not stumble as she said 'This is my Daddy and this is my Grammie.' I felt a sense of pride. After another introduction we said a group prayer and we were off to the races. I took my first bite and I heard it - "Mark!" It was Benjamin who was sitting directly across from me. Now you may be wondering - who is this kiddo and how does he know Mark? Well, during the first day of school I felt a tug on one of my pockets and turned around to find Benjamin. He asked me what my name was and I said "Mark!" From that day on whenever he has seen my he bursts out "Mark!" and it is always followed by a barrage of questions. Today was no different. Before I had gotten the first piece of chicken into my mouth he was already on me. "What is your favorite color? Is it green? Mine isn't. Mine is like purple? Do you know what color it is?" I tried to think in kid. "Burgundy?" I asked. "What's that?" he said. "It is like purple" I replied. He looked at me as though I was the dumbest person he had ever laid eyes on and retorted "No! It is violet - violet, you know, like purple?" I was just really pleased that he did not end the statement with "duh" although I could tell that is exactly how it felt. John was still sitting to my left and he had still not broken eye contact with me. Benjamin kept the questions coming with "Mark! What is my favorite letter? What is my favorite food? Why do you like Chik-fil-a? I have a brother, guess his name?" On and on and on. John just stared away. Grammie and Sydney just munched away through this inquisition.
I finally turned to John and said "Hi!" He looked straight at me and said "My name is John. J - O - H - N. John. Guess what my middle name is. It starts with an L. Can you open this?" He handed me a small plastic container. I pried off the lid and said Larry. He too gave me that look as to say that I was the dumbest human he had ever seen. He said "No, it is Leonard. Can you spell it?" Luckily I spelled Leonard correctly and I immediately passed his test. He had checked me out and I wasn't totally stupid so I was now his buddy. The inquisition continued from Benjamin but I somehow felt better now that I knew that John was on my side. I continued to answer questions and try to pass their tests throughout the remainder of lunch. By the end of our time I had only had about two bites and had to scarf down the remainder.
Now, I can't say that this was the most comfortable lunch. In fact, it was down right uncomfortable. I can't say that it was relaxing either. The constant barrage of test questions left me frazzled. I can't even say that the food was particularly good. After all, most of mine was cold. I never even really had the opportunity to concentrate on my daughter or Grammie but thankfully they seemed to have a pretty good time.
Given all of that I can also tell you that this was probably the best lunch I have had in recent memory. I can not remember the last time I have laughed so hard as I did on the way home. I can't really even do the story justice. It was just too, too funny. So, I offer one piece of advice. If you have a young child that is in school (or even if you don't), go have lunch with them at school. I can't promise you good food or atmosphere but I can guarantee you one of the funniest experiences you will have in a long time. It is one of those moments in life that just can't help but be appreciated.
Purpii can be so much fun.
5:13 AM 9/6/2006
Well, yesterday there were no lunches. Instead, there was dinner. To celebrate Grammie's visit and her last night in town before she headed back to Illinois we went to Chili's for dinner. A night out with the Dungan Five is a celebration whether you want one or not. It is like a party in a box and I can guarantee you laughing, spilled drinks, prizes, and on occasion even flying cake. It is the type of party that really draws attention. In fact, the Dungan Five Party in a Box is exactly the type of thing I needed in college. I would have been the coolest kid on campus. Sound to good to be true? Well, it is, but I have to come up with some kind of excuse for the raucous behavior. Regardless, we all had fun.
The thing that floored me was Chili's commitment to raising funds and awareness for St. Jude's. I was blown away that they had a Chili's Care Center at the hospital. I know that they have done this type of thing before. In fact, I think we have colored in a chili on a piece of paper, signed it, and made our donation for each of the last couple of years. Previously, it was always kind of a low profile fundraising event (at least at our Chili's) and other than the decorated chilis hanging from the wall you really had no idea what was going on. Last year it took a little work to even make a donation. This year was quite the opposite affair and it really had my mind racing.
Chilis was decked out and it went well beyond the hanging pictures. All of the wait staff were wearing St. Jude's t-shirts that were for sale. As we were seated we were even given a dissertation and asked to make a donation and color in our own chilis. There were posters and table toppers and inserts to our menu. Even the children's menu/coloring book was themed for St. Jude's and this particular fundraiser. The seek and find even included words like "hope" and the educational activities were all focused on childhood cancer. I was absolutely blown away. They were raising funds by selling t-shirts, taking donations for the colored chili's, and on September 25th they will be donating 100% of their sales to the cause. It is an incredible campaign for awareness and they have to be commended. I admit it - I am jealous. I have had similar ideas for campaigns and attempts for Lunch for Life but, at the very least, they have proven that the concept works.
Most know that my favorite research institution for neuroblastoma is not St. Jude's. In fact, many times I have probably been unfair in my assessment of them. I guess I have just gotten a little bitter because their focus has not traditionally been on neuroblastoma. They have made great strides in diseases like leukemia and historically that has been their main research direction. I was frustrated that so much money was going in their direction for childhood cancer and I just new it wasn't going towards neuroblastoma. Their success, how great it was, just further frustrated me in our position. To be fair, St Jude's is starting to do more and more research on neuroblastoma and, in its own right, is becoming a neuroblastoma center worth considering, especially for the uninsured.. (Boy, that hurt to say, I wonder why?)
Regardless, going to Chilis was a great experience last night for more than one reason. Although Lunch for Life is coming along wonderfully this year it gave me some great ideas and inspired me to be more creative.
It was a boost to my purpose.
5:10 AM 9/7/2006
Yesterday was another day back in the saddle for everyone. After a night of celebration it was time to get back and focus. It was a busy day for Sydney for two reasons. First, it was picture day at school. I know that isn't a big deal in the broad spectrum of things but big picture events are more than that to me. They are miniature milestones and opportunities to be thankful for where we are in life. Every time I get to strut into my office and place a new picture of Sydney onto my desk I get that extra special tinge of accomplishment. It is that we made it, you and me kid type of feeling of thankfulness. Unfortunately, that feeling is always followed with analysis which drives me completely nuts. I know how lucky we are for our time together and I also know that every day could be our last that we live in this bubble. Just so you know, the fear never goes away. You live it and breath it everyday. You get better at dealing with it,but it is there. We all know the reality of our situation.
See, there I go. I take a happy moment like taking some pictures and jumping another hurdle of life and almost immediately it gets analyzed into fear. Do you know how completely annoying that is? I hate that. I love many of the gifts that this journey has bestowed upon me. Most notably, it has given me a deeper appreciation for my family and a realization of what is truly important. Unfortunately it also gives that nagging question on everything I do. "What does it mean?" I have become accustomed to find the meaning in every experience that I have. It is great.(sarcasm) Yes, it may make me a more "sensitive" man but, jeez, is it annoying. See, there I go again. It can't just be annoying it has to make me more sensitive too. Everything has to have a reason. It has to have meaning. It can't just happen.
You see, we all deal with this in some way and it is clear that I still have my demons too. I dealt with my pain by analyzing it. I tried to give it meaning. It has gotten me through everyday.
The other important thing about yesterday was that it was Sydney's first appointment with speech therapy. Unfortunately, because I rambled on about my level of nuttiness, I just don't have time to go into it right now. It will have to wait for another day.
Proof: You don't even have to be sane to have a purpose!
5:45 AM 9/8/2006
I woke up this morning to find two emails in my inbox from parents with children who recently relapsed. I can immediately taste their fear and pain. My gut starts to turn because I can remember those feelings all too well. At this point, the parents know to much. They have been to the brink with their child and they know what it feels like to go back. They know exactly how to handle the rigors of treatment. By this point in their lives it has been grinded into their souls. They know what lies in their future except now they don't have hope as their companion. You see, when you relapse the doctors tell you that the disease will eventually win. Given that, it is really hard to find any semblance of hope. It is hard to believe that you will ever be happy again.
I have actually written volumes on relapse that I have never published. I have many of my own personal theories on the subject but have never posted them for fear of being wrong. Yes, it would bother me if I put something out there for other parents to read and it was wrong. It would bother me if I provided false hope. But, my real fear of being wrong, is that it would come at the cost of my daughter's life. In essence, I really don't want to know if I am wrong. I like believing in my delusion. However, I think it is time. I think it is time to put it out on the table.
Relapse does not mean death and it is my belief that relapse does not mean that your child is going to die. There I said it. I think I just heard the world cringe. I know I just pissed off half of the oncologists throughout the world but there you have it. I believe that the standard relapse treatment option is a self-fulfilling prophecy and if you choose to follow that path the disease will do just as your doctors have said. The focus becomes almost solely on quality of life which I understand. But, not when it dictates treatment failure.
I know the statistics and my goal is absolutely not to provide false hope but I think the game has changed in recent years. There are more weapons available and, therefore, more opportunities for success. It really comes down to what you believe about the disease. I will not stand here and say that it is easy. I won't say that every child with relapse will survive but I will come out and flatly say - it is possible. I know many kids that are 2, 3, 5, 10 years out of relapse and clear of disease and if that is achievable than so is the cure. Don't give up hope.
Over the coming weeks I hope to lay it all out there on the table for others to form their own opinions. I will discuss both sides as fairly as I can. There is merit to both points of view. I may not convince you that I am right but I will definitely convince you that I am not wrong. The answer is not black and white. However, there is hope and this is my purpose.
5:00 AM 9/11/2006
This was no ordinary weekend. This was a weekend full of super heroes and underoos. This weekend we decided to potty train the Dudester. Yep, it was time to let the little man free and see what he would do. It all started on Saturday morning. As soon as the little Grahamster woke up we ripped off his diaper cleaned his hinny and slapped on some Thomas the Train underoos. For the next two days we would take him to the restroom every 15 to 30 minutes. There were many times that he wanted his "Care Bear" diapers back on but we stood firm. As a side note, you don't feel particularly manly when your man-child runs around the house crying "Put my Care Bear diaper on, put my Care Bear diaper back on."
To put an end to this activity I decided to take Graham out to the golf course with me to putt and play around the chipping green. Those are actually his second favorite things to do. His real excitement is driving his Daddy around the driving range in the golf cart. He has made it a habit of hiding things in the car or in my locker so that once we arrive at our practice destination we have to drive all the way back to get whatever item he has "forgotten." He also had the added benefit of driving us back to the club house every fifteen minutes to run to the potty. He was in heaven.
In the few minutes that we actually did get to putter around on the greens I ran in to some of my old buddies. This is the group of golfers that I used to play with on almost a daily basis back in the old days before I had any responsibilities. It was good to see them but it was even better to introduce my son who, for some unknown reason, was introducing himself as Superman. Yes, you heard it, I would say "Graham, I would like you to meet Mr. Miller." He would then confidently stick out his hand, look them straight in the eye, and say "Hi, I am Superman." It was incredible. Talk about going from opposite sides of the spectrum. An hour before this he was running around naked screaming "put my Care Bear diaper on." and now he was Superman. I have never been prouder. I tell you, if you haven't experienced your 2 year old son introduce himself as Superman before then you have missed one of life's greatest moments.
The rest of the weekend went well. Graham really got pretty good at using the potty. He now understands the feeling and it is only a matter of time before he will master this skill. I am proud.
Today will be a busy day. Sydney has a dentist appointment at noon and then speech therapy at 4:30 PM. Unfortunately, she has a cavity. I don't know that they will fill it today but we are not to far from having it filled.
I know it sounds busy but I can handle it.
I have a purpose and, after all, my son is Superman.
4:30 AM 9/12/2005
Wow, there is quite a bit to update today. I am happy to report that Sydney is doing well. She went to the dentist today and it seems that her teeth are in surprisingly good shape. She has a loose front tooth but it is believed to be loose for a good old fashioned reason. Her adult tooth seems to be pushing it out of the way. It is a little early for such an occurrence but the x-rays support the conclusion. It makes me somewhat nervous because we are still yet to perform the panoramic x-ray and we really don't know what to expect. There is no doubt that the chemo that she endured did some damage to her adult teeth. At that age they were still just seedlings of teeth but the chemo can have a dramatic effect. We have been forewarned that she will most likely have malformed and/or teeth that are completely missing. It will make for some significant dentist bills in our future so I would just assume that the teeth stay in her mouth. None the less, it looks like the tooth fairy will be visiting us soon.
Sydney also went to her second speech therapy session. We are working on "S" at this point and it seems to be working. I know she can't really here the sounds but she seems to be forming the correctly. Practice makes perfect and we have been given some flash cards to work on with her. She is going twice a week and seems to love it.
There has been some really interesting developments on our trip to New York. Over the weekend I was talking to another parent of a child doing 3F8. They are on our same trial but had been switched to one week long treatment cycles. Just out of curiosity I contacted Yichih, one of the nurse practitioners, and sure enough, we no longer have to be in New York for two weeks. Our treatments will be cut in half. We now receive twice the dose each day but only have five day treatment cycles. So, to make a long story short, I had a lot of scrambling to do to cut our trip in half. We now leave on Sunday the 24th and come home in the evening on Friday the 29th.
Well, there you have it. There are the facts. Unfortunately I did not even get the chance to tell you about Graham's first day at school in "The Incredibles" underwear. It ended in perhaps one of the funniest moments in near history but unfortunately it will have to wait until tomorrow.
I have purpose this morning.
5:34 AM 9/13/2006
Graham is now on day five of his care bear free diaperless underoo wearing existence. He continues to get better and better everyday but he still lacks mastery in a couple of key areas. His major hurdle appears to be the "tuck." If you don't know what the "tuck" is then a historically accurate example of what occurs when you don't utilize this critical move is probably best.
On Monday afternoon I made my usual jaunt out to pick up the kids. Sydney was already at home due to her afternoon dentist appointment and I decided to let Ainsley sleep in a bit. This had us running a little bit late to pick up the Grahamster but I figured that school was probably a great place to continue his potty training. After all, they had thorough experience in the area. So, in short, I wasn't too worried about our tardiness but I was excited to see how successful he was.
By the time I arrived at school Graham was ready to go home. He had just awoken from his nap and the class was going through the process of visiting the potty. I knew this was the perfect opportunity for him to empty his bladder before the 20 minute car ride home. I started by simply asking him to go potty. That did not work. Apparently Graham has some privacy issues and does not like going to the potty at school. I really can't blame him. The bathroom is situated at the end of the room. There are no doors. It is just a small little cubby that is about 8 foot long by about 3 feet wide. Their is a junior toilet on one end and a sink on the other.
I carefully explained to Graham that he had to go potty before he went in the car. This wasn't new information. Even the other kids in his class supported me. They all nodded their heads in unison. It was ass if I had just spoken the gospel. Some of them even broke out into splinter groups to discuss my "rightness." I could hear conversations like "Yeah, my mommy says you go to the bathroom before you leave." and "Go potty before go car." I appreciated the support but Graham was having none of it. He then began with a barrage of "No nots" and "Not workin" which is Dudely for "No I am not going to the potty" and "I can't go right now."
I could not give in and after several minutes of arguing and shuffling him back towards the bathroom I finally got him into the vicinity. It then became a battle to get him to pull his pants down. I tried to help him but that just made him madder. He tried to pull his pants back up while his underwear was around his knees and he just ended up falling over on the bathroom floor and crying. Eventually I got him sitting on the potty. He wasn't happy and he was still crying. Sydney was peaking in on him which just made him madder so I asked her to leave. She would not listen so I had to physically pick her up and remove her. Meanwhile, Ainsley had found I nice table to stand on so I had to rescue her. Just as I picked her up Graham began to cry again in earnest. I rushed back to the bathroom to find a stream shooting from the potty to the sink.
Graham was sitting on the potty just as he was supposed to but he had forgotten to "tuck" wee willy winky and there is was. The perfect stream was shooting from his lap across the bathroom and onto the floor and the wall.
That my friends is the "tuck" and it is a critical step in toilet mastery.
It took a while for me to get out of school that afternoon. I had to clean it up while holding Ainsley, getting Graham dressed, and trying to keep the other looky loos out of the puddles - all of whom were jockeying for position to get the best angle to see what was going on. In the end, all I could really do was laugh. I congratulated my son, gathered up my gaggle of Dungans, and headed out the door.
Two rules of life:
Remember your purpose and don't forget the tuck.
5:03 AM 11/14/2006
Everyone had a great day yesterday and I can find myself, once again, in a place where I can talk a little bit about relapse. Now, first off, I need a disclaimer. I am going to write about relapse from the perspective of my opinion. I have no intention of insulting anyone's choices or hurting feelings. There are no right answers in relapseland but there are informed choices. I want to discuss those. Additionally, I am open to debate. If someone snoops in my diary and doesn't agree with me then, by all means, write away. I will include your argument. The point of these entries is to help people make good choices and it is necessary to have all of the facts. Unfortunately, more of us than not will probably face this horror. It is best to have an opinion.
I guess I should start off with where my interest began. Well, obviously, I am not just a casual observer. To this day, 2 years after a funky MRI and an even murkier immunocytology report we still don't know whether Sydney truly relapsed or not. But, for her especially, I have always been planning in the back of my head. I ask "What do I do if she did relapse?" or "What do I do if she didn't?" or worse yet "What do I do if she really does relapse?" In the beginning, I was really frustrated. Nearly everyone I saw relapse was eventually succumbing to the disease. What I was seeing was very similar to what Debbie wrote in my guest book. 1 out of 10 were surviving - at best. Eventually, I began to find survivors and once I found one it was much easier to find more. I found that the survivors were doing different things than the kids that weren't surviving and eventually I began to form my own opinions and conclusions
I discovered four distinct paths. First, there was standard relapse therapy. Standard relapse therapy was (and is) a mid dose combination of Topotecan and Cytoxan. Almost every institution in the US offers this as the standard answer to relapse. They explain that there is no cure to relapsed neuroblastoma and that this treatment will eventually fail. Like lemmings we hop, one after another, into this abyss. Generally we know of few other alternatives and tend to put quality of life first. With experts telling us that this is the answer we forge ahead with little hope of a future. We choose this path and it generally ends exactly as our oncologists predicted. Kids will take this until their marrows finally give way or until their eventual progression which ever occurs first. They will then typically switch to oral cytoxan or oral VP16 and run it through its course. Eventually, with this path of therapy, the disease will raise it's ugly head and all that is left to fight it are some truly desperate measures. Unfortunately, at this point, the body has generally been too beat up with chemo and it just never has the ability to recover before the disease takes hold again. Some kids survive with this tactic but there are very few and all of the survivors that I know of eventually went on to other forms of therapy. In my personal experience I have seen most people take this path of action and it is perhaps the most frustrating to me. It is characterized by a pretty good quality of life however few remissions have been attained using these methods alone and it generally ends in treatment failure.
The second path that I am familiar with is the high dose approach. This has been used far less in recent years for four main reasons. First, like any high dose chemo regimen, there are significant risks and toxicities. Secondly, the quality of life was poor. Third, most of the kids have already reached lifetime limits on many of the most effective agents. Fourth, in absence of anything else, this therapy eventually ends in another relapse or progression. The problem with this approach is that it really isn't any different than what we did in the first place to get rid of the disease. Unfortunately, this time around the body is less capable of tolerating the therapy, there are fewer chemotherapies available to treat, and the quality of life is dismal. It is an interesting approach but think about it. If treatment already failed using this theory in the first place, why would you try this same approach again. You know the outcome. I know, I know, the methodology is great as an induction regimin to beat back bulky disease. In that sense it worked but in the grand scheme of "life" it offered no difference in future. Without some significant change in the regimen there really is no difference from what we did in the first place. The good news about this methodology is that I saw more remissions. Unfortunately, I just never see many of them stick.
As you can tell these were not my favorite methods to battle relapsed neuroblastoma. The first predicted failure and the second seemed to be more effective but had appalling quality of life and, in absence of anything else and if you were real lucky, eventually ended in another relapse. If I was going to save Sydney's life these were not my best options. For better or worse these treatment philosophies were not where I found most successes. Thankfully, as I continued looking I found, in my opinion, better alternatives. Hopefully tomorrow I will have time to discuss those.
It is a purpose.
6:24 AM 9/15/2005
I had a really late start last this morning. I stayed up to all hours answering emails, making phone calls, and doing some work. The good news is that I accomplished a lot considering the fact that I am going to be out of the office today. Unfortunately, that doesn't leave much time to write in my diary this morning. In fact, right now I have two "helpers" watching "Higgly Town Heroes" beside me and another (the Dudester) in the bathroom. I really regret not having the time to discuss relapse therapies further this morning. I will promise myself to do it on Monday morning.
Until then the kiddos are doing great. They are tugging on me and it is obviously time to go. It is time to be a Higgly Town Hero and clean the bathroom wall.
This morning my purpose is conflicting with my purpose.
5:28 AM 9/18/2005
I have been absolutely astounded by the number of emails that I have received from people that were right in the midst of making a decision about relapse. Ironically, three of them even met with the exact same oncologist. within the past two weeks. I think relapse is a hard subject because there really is no official path. Well, that isn't necessarily true. There is an official path but the outcome is known and it isn't a good one. There is hope but it is generally at another institution and the battle to save your child's life now means uprooting and traveling for treatment. It is a hard road and a huge leap of faith.
Nearly everyone that asks my advice gets the exact same answer. Regardless of where your child is treated or what you are planning in the back of your mind I always suggest that a parent talk to one of the oncologists at Sloan and to Dr. Maris at CHOP. These two opinions pretty much encapsulate the two most successful views on the treatment of relapsed neuroblastoma that there are. Talking to them by email or phone is a good minimal option but I truly believe a visit is the best practice. I know it is expensive and I know it is inconvenient but it is absolutely worth it. There is value to meeting people face to face, talking to other families, and inspecting the facilities. In the end, whichever direction you decide to go, you as the leader in the war against your child's cancer have met with the best and seen all that there is to offer. You have done the research and are in a position to make an educated decision. I can't reiterate it enough. This isn't like diagnosis. Relapsed neuroblastoma isn't something that every pediatric oncologist can treat successfully. It isn't due to a lack of talent, it is due to a lack of tools and experience in dealing with it day in and day out. There are treatment options and perspectives that you simply don't have unless you go to one of these institutions. This time I don't just suggest it. It is in your child's best interest for you to talk to these people. Go.
Now I know I am going to get a bunch of email suggesting other doctors. What about Dr. Reynolds? Dr. Sondel? Dr. Russell? Drs. Seeger, Villablanca, Yanik, Shusterman, Cohn, Twist, Vic, Wagner, Matthay? The list goes on. Yes, and all great oncologists - all great oncologists for neuroblastoma. All of whom I respect and admire greatly. I think you should talk to any and all of them that you feel comfortable with. If these are your primary oncologists even better, but, also ask the question of Maris and one of the oncologists at Sloan.
Now that I have that out of the way I can start to discuss the last two paths to treatment of relapse. The reason I suggest the two oncologists above is because they are the ones that I have seen implement these two methods the best and with the most success. Additionally, they have the medical toolbox to actually carry out their visions. The first method of treatment of relapsed neuroblastoma is the one I have seen most utilized by Maris. His is the theory of treating it as a managed disease, much like aids. He seems to believe that there is merit to prolonged exposure to low dose agents to manage the disease. He has been able to add years to children's lives using this approach. Your child will probably never clear of disease using this methodology but the goal of this treatment is to always keep it in check. This spares the body of the toxicities of aggressive therapy and seems to add many more years of life span. The quality of life appears to be excellent. However, to date, the outcome is known. Eventually, the disease will win. We simply haven't discovered the drugs to keep it in check. The benefit to this approach is that it spares the body to fight for another day. With the hope of a new drug or discovery on the horizon his could be a worthwhile approach. I also want to point out that this is just my opinion of his therapy and I strongly urge you not to take my word for it. I can guarantee that he would probably not like my presentation of his treatment approach. Go and talk to him yourself. Your child may or may not be eligible for this approach and it may or may not be in their best interest because of their treatment history or status. In short, don't take my word for it and definitely ask the questions.
The final approach to treatment of relapsed neuroblastoma is just one of the many that are utilized at Sloan. I hesitate ever putting them in a box and saying that this is how they treat relapsed neuroblastoma because I have seen them use so many approaches. They really seem to carve a unique path for each of their patients and as soon as I say I think they will do this for your child they will do something else. Regardless of the methodology and treatment specifics that they utilize I have seen them get many kids into a second or greater remission and I have developed my own fourth theory of the treatment of relapsed neuroblastoma while watching all of this through my own eyes.
Unfortunately, I have once again run out of time. I can here the pitter patter of little feet on the stairs which means I have a job to do.
Right now I can't see the purpose for my purpii. Perhaps tomorrow.
5:43 AM 9/19/2006
I reread my diary entry and I realized that I was guilty of blurring the lines. I think I should have kept to my discussion on relapse treatment philosophies and not discussed the oncologists at the same time. In the process, I have branded Dr. Maris with a relapse strategy and I don't think that is a fair assumption. While I do believe that Dr. Maris tends to favor a low dose strategy that is not the reason I choose him as one of the oncologists that one should meet. I choose him for the same reason I choose Kushner - experience, equipment, and creativity. The fact of the matter is that these two doctors see more relapse than any one else in the world. They both seem to have a finger on the pulse of what is available and they have an uncanny knack for putting together treatment plans that seem to work. Although Sydney has never been treated by Dr. Maris I have met him several times, I have watched him at several conferences, and I have followed many of his patients. I have always been impressed with his abilities. He is known for working with parents to find workable treatments and is not afraid to push the envelope. He is not afraid to try new things. Most importantly he is extremely active in the neuroblastoma community and seems to understand all of the treatments available.
Dr. Maris has at his disposal many of the treatments that many oncologists have only read about. He is extremely active with MIBG treatments and protocols but also has experience with ABT-751, Fenretinide, CEP-701. Again, many doctors just read about these agents. He has actually tried them. He has seen how they work and knows (as much as one can) how they are working. He is aware of the data and the research and I think that is one of the reasons that he appears to be more effective when using these agents. This isn't to say that his focus is merely on agents with mild toxicities. I believe he will use more aggressive agents to get patients to a state of stability and then he will use these lower dose agents to manage the stability. That is only my opinion.
I admire Dr. Kushner for many of the same reasons. Although he is best known for using the antibody (because he is at Sloan), I think his true gift is his ingenious use of chemotherapy. Many of the concoctions that you see used in relapse therapies came straight out of his head. Generally speaking he is always one step ahead when it comes to using chemotherapy. That is one of the reasons that I never try to guess what he will do for a particular child. In short, I know he is brilliant. He along with Kramer, Modak, and Cheung are well respected oncologists and all have made important discoveries in the world of neuroblastoma. For instance, it was Dr. Kramer's CNS protocol that revolutionized CNS relapses. In short, one of the important reasons you go to Sloan is to discuss the antibodies but don't think that is their only strength. I would put them head to head with any team when it comes to chemotherapy, radiation, MIBG, or the like. It is important to talk about the 3F8. I certainly can't say that it is a silver bullet. I can't say that it will cure every one. But, I can say it is an effective weapon against neuroblastoma and I can say that 3F8 kills neuroblastoma in kids.
In short, I believe in these two oncologists because I believe that they are the absolute best in the world. In my opinion they know more about the disease and its treatment than anyone else and they have done it more successfully. They have access to all of the best tools and they know how to use them.
They have a purpose too.
4:48 AM 9/20/2006
Late yesterday evening I received the sad news that a fellow angel gained her wings. Christi Thomas has gone to heaven. I have followed Christi's journey for much of the last four years. The Thomas Team were on a separate but parallel path to ours. Christi was diagnosed about 6 months before Sydney and I always felt that they were one of the survivors from our "generation." They joined the NB list about the same time as we did and were one of the first to welcome us. They feel like old friends and my heart absolutely aches. I have followed them more closely over the past few months and it has been an exercise in reality. No family should have to endure their pain. It seems so incredibly senseless and it has been gut wrenchingly sad. Their family has closely chronicled her last few weeks and it has brought the world to tears. She was and is a beautiful little girl and she will live on my heart forever. I pray that their family finds comfort - especially her little sister Shayla. Christi you will be missed and thank you for honoring us with your life.
4:42 AM 9/22/2006
The day before yesterday was a somewhat chaotic day. In the end I stayed up too late and slept in yesterday morning. I am happy to report that the Dungan five are okay. Over the past week I really have not had the opportunity to talk to much about the kiddos. They are doing wonderfully and their lives have been exceptionally routine. Sydney has started her GM-CSF in preparation for her next treatment cycle of 3F8 next week. Thankfully we have not really had any strange side effects. We have gotten into the habit of pre medicating her with Vistaril which seems to keep the hives away and reduces some of the funky little side effects that we have seen at the beginning of the last few cycles. Believe it or not she is really excited about our impending trip to Sloan and can't wait to go up and see all of her friends. She is starting to write short sentences and finds great joy in writing the nurses letters. We have quite the collection of post it notes and note cards filled with little inscriptions. Here is one of the latest:
Hi Cat, I love you and my heart is so happy to see you. Love, Sydney.
As you can see even though Sydney knows what is coming - days of tummy owies - she still can't wait to get there. It amazes me. She and I will be leaving for New York on Sunday afternoon and we will be returning the following Friday.
Graham has been doing incredibly. For the most part he is a full-fledged potty going little Dudely. He still makes the occasional mistake but is becoming more and more consistent everyday. He is aware of the feeling and has begun to ask to go to the potty when he is ready. I would love to regale you with a story of potty-training-hood-dum but there has been little excitement. Well that isn't entirely true. Earlier this week I really put my foot in it - literally.
Graham has gotten the "number 1" thing down. I don't know why but it seems to be the first half of the whole potty thing that the kiddos really seem to get down. "Number 2" seems to be a whole new realization and sensation. Although Graham is approaching mastery on "Number 1", the "Number 2 sensation is still in the works. I am going to be frank. Human poo scares me. I am like a hawk and I am always on the watch for misplaced poo. I have never feared changing diapers or the like. That is where poo belongs. However, I have always feared the diaperless pooing. For this reason, I am always on the lookout.
It was in the evening. Graham had made it to the potty but he forgot the ever important tuck and ended up urinating all over her legs and clothes. No problem. I stripped him down, washed him off and made my way back to the laundry room with his clothes. On my way back to the bathroom and up the stairs to get him a change of clothes I noticed him in dining room. He had kind of a quirky look about him and his knees seem to be pointed in a bit. Oh, my god. I knew what that was. A pooing was getting ready to take place. I shrieked which scared him and in one swift move I leaped across the room scooped him up and flew to the rest room where I set the boy on the potty. Sure enough. Plop, plop, fizz, fizz. Oh what a relief that was. While the Dudester finished up I decided to walk back to make sure that no phantom pooh escaped. I stepped into the dining room, reached for the light switch, and realized that the floor felt spongy. I had stepped in my worst nightmare. Human poo. Barefooted.
Horror of horrors.
Now I would love to sum up this story with some kind of cute statement. I would love to tell you how this made me love my kiddos and family even more. I would love to tell you how lucky I was. Come on, people. I stepped in human poo - the Kryptonite of Superdad. It isn't going to happen.
Sometimes purpose can just be down right shi--y!
4:25 AM 9/25/2006
I am happy to report that we landed safely in New York with out incident. Unfortunately, we left a little late because of some weather along the east coast but we had such a strong tail wind we still made it in early. Sydney and I are slowly getting back into the grind. Once we got back to the Ronald I gave her some Vistaril as a premed to her GM-CSF shot and we immediately headed out to Gristedes for some groceries. Sydney loves the grocery store because it has grocery carts that are Sydney sized and she takes great joy in ushering me around the store while she pushes our grocery cart. I kept having to remind myself that this was a short stay and not to overload on what we usually purchase. I am happy to say it was healthy stuff like vegetables, milk, and fruit. (Did you read that Lynley?)
By the time we got back from the grocer we were rewarded with a call from Allie, our first official New York friend. She came and spent the afternoon with us and entertained Sydney while I unpacked the groceries and all of our luggage. We all ended up going out for a quick bite to eat a little later.
Sydney had another reaction to the GM-CSF yesterday. I thought we had dispelled the rumor that it was actually the GM-CSF during the last visit but there is no doubt in my mind that it is what is causing her belly pain. Last time we had Sydney's antibiotic to blame but this time she is antibiotic free. It is clear that it is the GM-CSF that is the culprit. About 15 to 30 minutes after her shot she doubles over and complains of pain in her belly. It is if she has some type of cramp. I am beginning to believe that it is somehow related to the new preservative that they are using in the GM-CSF. The good news is that the pain seems to be short-lived ( 5 to 10 minutes) She seems to believe that if she gets food into her stomach it makes it feel better. This morning I will try feeding her before giving the shot.
Today marks the first day that Sydney should be receiving the new double dose 3F8. It ought to be very interesting but I am a little leery. Mondays have been tough enough for Sydney without the additional mouse juice. I am expecting more pain and possibly more hives and rashes but hopefully it will go smoothly. Regardless, it will be a tough morning for my little girl.
Today my purpose is clear.
5:26 AM 9/26/2006
The first day of the new regimen is in the history books. I spent much of my morning asking questions about the new double dose. My first stop was with Yichih the nurse practitioner. She must have been ready for my questions because she preempted all of my interruptions with answers. It turns out that this is the third week of the double dose, single week treatment cycles. The first week there were several complaints of headaches but that was not confirmed in the second week or in our experience. For the most part people claimed that the pain came earlier and lingered longer but the intensity was about the same and that has certainly been our experience. They have had more complaints about residual pain. Sydney experienced this as well. About twenty minutes after the infusion was over she had another wave of pain that needed to be calmed with a half rescue dose of Dilaudad. She then complained sporadically that her tummy hurt. Her comments and the pain seemed to be frequent but short-lived. Sydney's pain started about twenty minutes after the infusion began. This was somewhat of a surprise as we had been told to expect the pain to start almost immediately (within the first 5 to 10 minutes) I was somewhat cautious when it came to dealing with her pain yesterday and I was anxious to stay ahead of it. In the end she received 1 full dose of Dilaudad as a premed and then we gave her 3 half doses throughout the remainder of the treatment day.
If I had started this story by saying that we left the hospital at about 6:00 PM you would have thought it an awful day. But, truth be known, it really wasn't all that bad. Sydney had a late start. We did not even begin the infusion until about 11:45 and I just let her sleep away the afternoon. All in all, it really was a pretty good treatment day. If I had to compare it to many of our first days back in the saddle again I might even have to say it went better in many ways. Unfortunately, Sydney never really fully recovered when we arrived back at the Ronald. She was content to sit in her bed, snack, and watch cartoons. She feel asleep peacefully at about 8:30. Although I heard her whimper a few times throughout the night she seemed to rest pretty comfortably. No, it wasn't a day in the park but it was a pretty good first treatment day all things considered.
This purpose did all right.
4:38 AM 9/27/2006
Day 2 is down and I am happy to report that Sydney tolerated treatment well again. I find myself tempering my statements regarding the new dosing for fear of coming off like an ogre but our experience has been - well - terrific. Yes, the pain starts a bit earlier and, yes, it lasts a bit longer but, to be honest, given the fact that treatment only lasts five days, I think this is a huge increase in quality of life. The biggest difference that I have noticed in Sydney thus far is that she is not as active in the afternoons. This was only the second day of treatment and even during the old treatment dosing I certainly would not have considered that to be too strange. I am interested to see what today brings our way. Overall, I would say that this was a mildly harsher treatment in our experience thus far but the trade off in quality of life is enormously better.
The more that I think about this new protocol the more excited I am. Of course, we really won't get to take full advantage of it since we are nearing the end of our treatment at Sloan. However, that really is not the point. For the families that follow in our footsteps this is an enormous gift. It reduces cost significantly. With only needing to be in New York for 5 days instead of 12 it cuts costs by more than half. That is less food bills, less hotel bills, less medical bills, less entertainment bills, less everything. That does not even begin to address the increase in quality of life in being able to be with your family for more than 50% of the time. I guess what I am trying to say is that this is no small change. Its impact is enormous to the families.
All of this is well and good but it means nothing if the new dosing is not as efficacious as the old method. So, you know me, I grilled Dr. Kushner about the change. He gave three pretty good reasons. First, is efficacy. The have been doing the high dose trials now for several months and they are up to a level which is 5 times that amount that Sydney is doing now (10 times what she had been doing previously) and they have found that, not only is it well tolerated, the kids were responding well. Additionally, lab models indicated that it was actually more beneficial. In the end, they used to deliver 3F8 over a single week. When they decided to increase the amount of drug they actually just increased the time period to two weeks. At that point they really had no data regarding dose escalation. Moving treatment back to one week is really no different to the way that it started out. It is just that now they are doing it with twice the drug. The second benefit that Dr. Kushner found was for the kids that had a HAMA. In many cases kids typically HAMA'd at the end of the first week. Because of this they were never given the second weeks dosing. By moving all of the treatment to a single week the kids that will HAMA are at least receiving the full benefit of the entire dose of 3F8. In this sense it is quite beneficial. Finally, he said the decision was made from the perspective of beds. Scheduling was a nightmare as there were so many needing beds for 3F8. Many patients were being delayed or turned away because there simply weren't enough spots available. By cutting the treatment period in half they effectively doubled the availability. Well, there you have it - Kushnerisms in a nutshell.
My purpose is mildly optimistic.
4:36 AM9/28/2006
We made it through another day. Wednesday's treatment went fairly well. Once again, Sydney make it through treatment with only two half rescue doses of Dilaudad. I have been trying to decide if the pain was a bit more intense or whether I just did not stay on top of the pain as well as the days prior. It seemed like it might have been a bit more intense but she was also a bit late in receiving her first dose of Dilaudad. Regardless of the cause, she seemed to be in a little more pain and it was evident in her heart rate. To me it appears that we have developed a trend with her heart rate. Each day it has climber higher and higher and lingered there longer. On day 1 it was in the 140s, on day two it was the 150s, and yesterday it was the 160s and 170s. It has me a bit concerned but it does not seem to be related to pain. I don't know what it is about the 3F8 but there is definitely something that it is doing to their heat rates that it has very little to do with the pain. Others have noticed this trend as well. At this point it is entirely manageable and nothing to be too concerned about but we are not alone in our experience. I am just hoping that Sydney has hit her threshold and her heart rate does not continue to climb.
Now those were the facts but Sydney said something to me before we went to bed that really puts this whole thing into perspective. Just as I shut off the light and got ready to go to bed she said
"Daddy?"
"Yes Honey," I replied.
"This was a great day. It was perfect."
"I am glad."
"You know, Daddy? You were right about the sleepy medicine. It makes the owies go away. Today was the perfect day, can you make tomorrow just like today?"
"I will do my best, honey."
"Thank you, Daddy. I love you. You are the best Daddy. Thank you for my perfect day."
"I love you too honey. Sleep well."
I am continually completely amazed by the perspectives of these little ones. Here I thought that I really did not do as great of a job managing the pain as the day before and Sydney's perception was totally different. In her mind, even after all that she had been through, that was a perfect day. Today my quality of life got better again.
My purpose is amazing.
4:56 AM 9/29/2006
Good morning! As usual the the morning of the final day of treatment leaves me scrambling to get everything packed and cleaned. Sydney woke up this morning and told be to stop cleaning and to either go to sleep or to go type on my computer. So here I am. I have a feeling this won't last though. Although I can't see her through the dark bedroom I can hear the sheets rustle. All in all, yesterday was a pretty good day of treatment. In fact, I would say that it was just as good as Tuesday. I am happy to report that we seemed to hit the upper ceiling of heart rate. Although Sydney's engine was running fast again it stayed in the 160s and then fell relatively quickly after treatment was completed. All in all, it was a pretty good day. Of course, I did not ask her so I could be totally wrong again. Regardless, I am praying that today goes as smoothly and that we are able to make our 4:00 PM flight.
Well, it is quiet once again. I am going to sneak out of bed and see if I can finish cleaning. I feel like a teenager trying o sneak out at night. Boy, has life changed.
Purpose makes it somehow more fulfilling though.
4:41 AM 10/2/2006
I blinked and somehow we finished antibodies and we are back home. I don't think you understand. I am not still in New York. I am at home with my family. In fact, I spent all weekend with my family. This 1 week 3F8 thing is amazing. I can't believe how quickly that went by. Not quickly enough, though, for my poor little son. I have got to find a solution for the poor little man. This time alone with the girls -- Mommy, Ainsley, and DeeDee -- is not doing anything good for his manhood. I guess it really is good that I was only gone for a week. Thankfully Graham still maintained some sense of his boyhood manliness. I heard many reports of him running around in his Superman cape. Unfortunately, I also heard about him throwing a fit because DeeDee took away his Superman lipstick. (Don't ask! I am really not up to discussing it yet.) Then, the night before we got home he woke in the middle of the night screaming "I am a princess! Give me back my princess stuff." It is clear that this shortened one week treatment cycle could not have come at a better time. I have a feeling that had we waited another 7 days he would have almost assuredly greeted me at the airport dressed as Snow White or Cinderella. Yes, it seems this shortened cycle has saved my Dudely as well. I have had two days at home with him now. I have spent much of the time grunting and scratching and I am pretty sure we have worked all of that girlie stuff out.
In all due seriousness, I still really do look back on last week's treatment in amazement. My perspective really has not changed. The pain comes earlier and it last longer. But, to be honest, that really does not bother me. Sydney is so whacked out (technical term) on Dilaudad she really has no concept that the therapy is any different. I have asked her several times what she has thought about it and she does not seem to think it is any different. So, to make a long story short, the pain coming earlier and lasting longer does not really seem to effect her. The difference I did notice however was her heart rate. It certainly did run a bit higher than normal and it seemed less related to her actual pain and more to the antibody itself. The other thing I noticed is that Sydney did not recover as quickly in the afternoon and evening. She definitely lost a couple of good hours of fun everyday due to the increased dosage of 3F8 but I can't really complain seeing that she gained 7 days of non treatment time at home with her family. From what I understand there were others who experienced more residual pain but that was not our experience. The other thing I noticed about Sydney was that when we had gotten home I could definitely see the toll on her little body. She clearly lost weight but this was due to the fact that she simply was not eating very well due to the changed schedule. She totally missed lunch and getting her to eat dinner was a bit like pulling teeth. It will take a couple of days at least to get her back to fighting weight but I am happy to say she will be doing those things at home and at school.
All in all, I am still extremely pleased with the new regimen. Like with everything, there are trade offs, but, in my mind, this one isn't even close. This is a huge improvement on quality of life.
My purpose is whole again.
4:34 AM 10/03/06
We have only been back a few short days and we are already into full swing. Yesterday Sydney spent the entire day at the zoo with her class. Lynley and I played hooky at lunch and met them at the picnic tables at the zoo for lunch. Sydney seemed to be fully recovered and was one of the most active in her class. Neither Lynley nor I know whether she was going bezerk in her effort to impress her parents or whether it was because she was so excited to be back with all of her friends. We were just happy to see her feeling so well. It was clear that she had all of the energy in the world.
Today Graham and Ainsley both have dentist appointments and it looks like Graham might even get a surprise visit with Dr. Debbie. He has woken up several times throughout the night to complain that his ear hurt. It would not be surprising to me if he had an ear infection. He has had some significant congestion and a cough over the last week. It sure doesn't take us long to get back into the swing of things.
Unfortunately, I have a mountain of work in front of me and I had best get back to work. Playing catch up after a shortened trip to New York doesn't seem to have changed.
At least it changed for my purpose.
4:26 AM 10/04/2006
Lynley definitely has some guilt about yesterday. The good news was that Graham and Ainsley's trip to the dentist went smoothly. They were both given the clean bill of health. Afterwards, Lynley called me to discuss whether we were actually going to take Graham in to see Dr. Debbie. I told her to make the decision since she had been with him all morning. The trick with Graham is that he has been well trained by his sister and has an inkling for the little purple pills as well. When he complains of an ailment you are never too sure of whether he is just jabbering for the sake of jabbering, jabbering because he wants some Tylenol, or jabbering because he is actually sick. I have mentioned this before. My son is sensitive, okay? After waking up the night before he had not complained of his ear hurting all morning and it finally sounded like his congestion was clearing up. Were we on the road to recovery? Were his ear aches real, imagined, or just attributable to the drainage of snot? Who knew? The point was that he seemed to be a picture of health and Lynley elected not to take him to see Dr. Debbie. That worked just fine for me. She had spent all morning with the boy and had a much better gauge on him than I.
By the time evening rolled around Graham was back to complaining about his ear again. I looked in both ears with an otoscope and could not differentiate any difference between the two ears. Both looked healthy to me. Of course, my otoscope is a pocket flashlight with a specula on one end so I would not listen to me. Additionally, I haven't got a clue unless the ear is bright red with a miniature flashing neon sign that says "Ear infection here." Regardless, by the time Mommy got home he had developed a low grade fever (99.2F). In my mind it was not a fever but it was certainly enough to open the flood gates of maternal guilt. Lynley has been kicking herself ever since and I have had to spend my time listening to fun facts about maternal instinct. Regardless, Graham continued to play the rest of the evening and with a dose of Tylenol and a bath his temperature eventually came back down to normal. There is no doubting that today we will be making a trip to see Dr. Debbie on the Dudely's behalf.
Just because you have a purpose does not make you right.
4:23 AM 10/5/2006
It is official. The Dudester is sick. He has an ear infection but his real problem seems to be the bronchiolitis. Listening to his chest you would think the little man was a 75 year old smoker. I took the gaggle of junior Dungans with me to see Dr. Debbie yesterday afternoon. It was quite the site. I would not admit this publicly but I was a little scared. This was the first time that I had all 3 of them alone at the doctor's office. Sure I have been there several times alone with two of them and Lynley and I have been there often with all three but this was my first time all alone. The issue was not whether I could handle it. The question was how much screaming, crying, and fighting I could buy without being asked to leave. The had me savagely out numbered. I was setting myself up for failure and I could see their evil little masterminds at work.
Before we got out of the car I laid down the law. I explained what behavior was appropriate and what type of behavior would end up in jail time. I also explained the reward system. If they were good they would get a sticker and a lollipop. If they were bad I would decide it was time for flu shots. Okay, I didn't actually say that but I sure thought it. In all actuality I asked Sydney to be my superhero helper, I strapped Ainsley in the stroller, and I gambled on the fact that Graham was to sick to cause much trouble.
As it turns out my kids were perfect little angels. I would say I was stunned but that would not make me look very good. So, I will just say that it was the expected result from my expert parenting skills.
So, to make a short story longer, Graham is sick. He still has a ton of energy and he appears to be just fine on the outside but it does not take too close of an inspection to discover that he is not up to par. We will be keeping him home for the next few days. He needs regular treatments of albuterol on the nebulizer and he is also receiving prednisone and an antibiotic. We need to get the rattle out of his chest and then we can start to worry about the ear infection.
Just another day in the life of purpose.
6:38 AM 10/6/2006
There is a conspiracy. My children are trying to make me "stupid" by slowly depriving me of sleep. For the third night in a row I have awoken before 3:00 AM and have been unable to go back to sleep due to some type of kiddo intervention. Unfortunately, this morning it was the third of my children, Ainsley, who for some unknown reason decided to cry and scream until about 6:00 AM. We are still at a loss as to why. Eventually we calmed her down and eventually we got her back to bed. I really have no clue as to why. She seemed totally fine. She appeared healthy - just not happy. We gave her some Tylenol just for good measure and put her back to bed a bit ago and she seems to be resting comfortably. Unfortunately that has left me with near minutes to update my diary. Perhaps, I will have more time this weekend.
Right now, I have purpii to focus on.
5:03 AM 10/9/2006
All in all we had a pretty good weekend. It started off with a trip to the Dr. Debbie. After picking up Sydney from school I raced back towards our side of town to drop her off at Mommy's work. This is one of Sydney's favorite pastimes and it reduced my "twerp" overhead while making yet another trip to see Dr. Debbie last week. This time it was Ainsley who was in need of her excellent care. So, to make a long story short, I scooped up Graham and Ainsley and whisked them in and out of Debbie's office. As it turns out Graham was fairing much better. Unfortunately, it was Ainsley that was the next of our kids to succumb to the virus and ear infection - two down one to go.
On our way home we had a huge surprise. Sydney finally lost her very first tooth. I say finally but, to me, it was neither finally nor on time. It was incredibly early. She is just five years old and from what I understand it is extremely early to lose a tooth. I feigned true excitement but I must admit that it has me concerned. The good news is that we know an "adult" tooth was pushing this one out. What we still do not know is what the condition of this tooth will be when it finally surfaces. We have been told to expect malformed and deformed teeth to be her norm. For many who may not know, the reason for Sydney's future teeth problems is the chemo that she received in treatment. Unfortunately, when she was receiving these chemotherapeutic agents it was also an important time for the formation of these little seedlings of adult teeth. Worse yet, no one really knows what to suspect because (a) so few of these kids have survived long term and (b) it has really only been in the last fifteen years that they have been using such strong concentrations in induction. It is an unknown and it makes this moment in our lives bittersweet. I am so happy that she has lost her first tooth. What an incredible milestone. Who knew that she would ever reach this point in her life. Remember it was only 3 years and 4 months ago that she was given a 15% to 25% chance to live for 2 years. However, milestones are frightening because, like her adult teeth, we just don't know what her future will hold. We still live day to day and are thankful for every moment.
Overnight the tooth fairy brought her a dollar. Apparently inflation is running rampant in the land of the mysterious and supernatural. I remember getting a nickel. Then, of course, my tooth fairy could have just been a tight wad. Regardless, we used her dollar and her collection of good girl stickers (she gets a sticker every time that she is good and they earn her rewards) and we went and bought her a brand new Disney Princess bicycle. She spent much of her weekend riding it around the block with her baby brother slowly following in his big wheel. All in all, it was a superb weekend until late last night when Sydney awoke with an ear infection. Our third has fallen victim. The good news is that we should hopefully have it out of our system.
Today my purpose will include a ride to see Dr. Debbie.
5:00 AM 10/10/2006
Three down! I guess I will start out by saying that it sounds like everyone had a good night's rest. I did not hear a peep all night. It isn't all that surprising considering the drugs that are swimming around in their little bodies. Between the threee of them we have Motirn, Tylenol, Albuterol, Omnicef, Prednisone., Rescon GG, Tobramycin, Claritin, and Singulair. Yesterday afternoon Sydney's ear infection was confirmed by Dr. Debbie. Hear left ear is bulging with infection juice and it certainly would not be surprising to see it rupture. This could potentially addd another antibiotic to the mix. She also has, or had, "pink eye." As bad as her ear looked I was expecting the absolute worst. I was expecting her to be up all night long but thankfully they have all rested comfortably. Whatever this virus was that eventually led them all down the path to these ear infections I am happy that they are all on the mend and it has made it through them so quickly. Of all of the bugs we have seen throughout preschool this one certainly seemed the most convenient for everyone involved.
It is ironic that I am talking about my kids having a virus. Maybe it means something but I just received one of the more interesting emails that I have received in a long time about neuroblastoma. There is a group of fathers floating around in the world of neuroblastoma and we talk fairly frequently. Most importantly we keep each other informed of what is going on in the world of research. I don't think there is anyone of us that is on top of it all but as I group I think we do a pretty good job of keeping a pulse on the most promising neuroblastoma research. This mornings email was about the Sinbis virus. The have been studying this relatively benign virus in mice infected with neuroblastoma and have discovered that it does a pretty good job of killing the disease. In fact, it is surprisingly effective. In the couple of cell lines that they tested they found it to be between 80% and 100% effective in mice. I think this type of viral therapy will be a big player in the future of cancer research and it looks like this could be an excellent place to start. For those of you who would like to know more about it, here it is:
[187] Oncolytic Viral Therapy for Neuroblastoma Cells by Sindbis Virus
Ayako Takenouchi, Yuji Shino, Tadashi Matsunaga, Hideo Yoshida, Katsunori Kouchi, Tomoro Hishiki, Shin-ichi Yamada, Yoshiharu Sato, Keita Terui, Tetsuya Mitsunaga, Mitsuyuki Nakata, Naomi Ohnuma, Hiroshi Shirasawa Department of Pediatric Surgery, Graduate School of Medichine, Chiba University, Chiba, Japan; Department of Molecular Virology, Graduate School of Medichine, Chiba University, Chiba, Japan
Background: Recently, the application of replication-competent viruses has been extensively studied as anticancer agents. Sindbis virus (SIN) is an RNA virus that belongs to the Alphavirus genus in the Togaviridae virus family, and is considered to have limited or no toxicity against humans. However, SIN shows cytopathic effects on various cancer cell lines. In this study, we have investigated the antitumor effect of the replication-competent SIN AR339 strain on neuroblastoma (NB) cells. Materials and Methods: Five NB cell lines (SK-N-SH, IMR32, RT-BM-1, GOTO, LA-N-5) were tested to determine the susceptibility of NB cell lines to SIN in vitro. Cells were plated onto 24-well plates at 1105 /well and infected with SIN. Morphologic changes and cell viabilities were analyzed. To assess the in vivo effects of SIN on NB, SK-N-SH or IMR32 cells (1106 ) were injected subcutaneously into the back of nude mice (BALB/cAnNcrj-nu/nu). SIN injection at a dose of 1106 plaque-forming units (pfu) intra-tumor (i.t.), or intravenous (i.v.) was started when the tumor reached 5 mm in diameter. Injection was repeated twice a week thereafter. Tumor volumes were measured twice a week. Injection was discontinued once the tumor had become undetectable. Results: SIN showed drastic cytopathic effects on all NB cell lines tested in vitro. There were almost no viable NB cells after 48 to 72 hours from SIN infection at a MOI (multiplicity of infection) of 0.01. In xenograft models, i.t. and i.v. inoculation of SIN resulted in remarkable regression of the implanted tumors. In the SIN i.t. group, 4 out of 5 SK-N-SH tumors completely disappeared within 3-8 weeks. Five out of 6 IMR32 tumors also disappeared completely by SIN i.t. within 7-10 weeks. The survival rate of the xenograft mice was significantly higher in the SIN i.t. group than in the control group injected with normal saline (SK-N-SH: 80 vs 0% ; p=0.0126, IMR32: 100 vs 0% ; p=0.00114, at days 200). In the SIN i.v. group, 6 out of 7 SK-N-SH tumors completely disappeared within 4-8 weeks, but one of those relapsed 2 weeks after discontinuing SIN injection. Conclusions: Our results suggest that SIN is significantly oncolytic against NB in vitro and in vivo, and thus is a possible candidate of a novel therapeutic agent for NB.
The frustrating thing about this study, like so many others out there, is that we simply can't get them to market quickly. No matter how good the research is we still have two problems. We have a funding problem and a population problem. Simply put, we have too few kids and too few dollars to test all of these therapies quickly. It will take more creativity and more cooperation throughout the neuroblastoma community to get anywhere fast. We are spending too much money and time trying to prove or disprove the impact of antibody therapy on overall survival when we could be asking so many other important questions. We know antibodies kill disease. We know that most kids should get them but they aren't the silver bullet. Let's move on. The cure is out there.
Some days my purpose seems so frustrating.
6:09 AM 10/11/2006
Good morning! I am happy to report that we made it through an entire day without one of the kiddos complaining about an ear ache. Finally, they all seem to be on the mend. Sydney was back in school and Graham was as well. Ainsley, too, was back into her routine at home with Martha. It feels so good to have everyone back into some sort of normalcy. Tomorrow we will be heading back to the oncology clinic for a HAMA draw in the morning but other than that this week should hopefully smooth sailing.
Lynley and I actually went out on a small date last night. It was fun but she and I really needed to regroup after the chaos that we have experienced lately. With the kiddos all sick we have been operating in survival mode and we needed to get our minds set straight before we went completely insane. When we have sick kiddos around the house Lynley and I are real efficient at adjusting to caring for the kids. We have excellent teamwork but we just kind of turn into robots. We are able to shirk whatever is not an immediate priority right off of our backs and focus on the here and now. However, after the mayhem and civil unrest that inevitably ensues we have to step away and realign our priorities. Each one of our kiddos has their own special needs and in order to deal with them effectively we have to move away from this reactionary lifestyle. Moving from survival mode to the land of living is as simple as changing from reactive to proactive thinking. Unfortunately we have to make the conscious decision or it seems real easy to fall back into the reactionary lifestyle. The good news is now we feel like we are in charge again and we can get back to focusing on what we need to -- training our children before they train us.
We are back to our purpose.
5:15 AM 10/12/2006
Many saw the plane crash on the news yesterday afternoon. There was quite a commotion amongst the neuroblastoma community as the crash occurred about a block from the Ronald McDonald in New York City. The Ronald is located at 405 E. 73rd between York and First. The crash occurred on 72nd between York and the East River. It was exactly one block away as the crow flies. Luckily, the crash occurred on the 72nd street side of the building which had far less pedestrian traffic. It is quite common for many of the families to walk on the York side of the building where the crash occurred on their way to Sloan Kettering or some of the other area hospitals. In fact, the first time that we traveled to New York we stayed at the Helmsley Medical Tower which is right next door to the Belair Tower (just across the street on the 71st side.) So, as you can see, this was right in the middle of all of the action. I can't tell you how many times Sydney and I have looked out the window at this building.
I quickly counted all of the people I knew on my fingers and toes and immediately started checking all of the websites of the families that I knew were there. First, was the Saxon's. Paul and his family, who originally hailed from Cook's, were currently up there enduring their second week of high dose 3F8. Thankfully Leigh had already contacted Terrill and they had posted that they were safe. There were many others and all were safe but from what I understand there was quite a commotion. The police barricaded the streets all the way up to First Ave. and many had to wait for representatives from the Ronald McDonald House to escort them back to the house. Keep in mind that the house accommodates about 84 families. I have to imagine that they spent the better part of the evening walking the families back and forth to the Ronald McDonald House. I don't know how the night went but I imagine it was full of noise and activity.
Thankfully it was much less exciting around here. Ironically a fire truck visited Graham's school yesterday morning and he had a great time with all of his partners in crime inspecting the pump truck and watching it shoot water across the parking lot. Ainsley's and Sydney's day was far less exciting but I am happy to say that they are all well on the road to recovery.
Here, it was just another day of purpose.
6:21 AM 10/13/2006
Yesterday we had a visit to the oncology clinic at Cook's. As always it is incredibly refreshing to stop by to see all of our friends. However, it was surprising to see how much has changed. They have added two more oncologists, the staff at the front desk has changed, and the last time I made it up to 3 North there was not a soul I recognized. Yet, the more things change, the more things stay the same. We were still greeted in the same loving matter and it still felt special to dawn those halls. Sydney had a HAMA draw which meant she had to get a needle in her arm. She spent much of the morning fretting about it. It seems that the less and less that we visit the clinic and the older she gets the harder these procedures are on her. In the big scheme of things it is truly a minor procedure but she has such a tough time with it. She has always been such a trooper with all of the procedures that she has endured and I am really having a lot of difficulty giving her comfort with this little hiccup. I am at a loss as to why this is such a mental hurdle for her. This will continue to be challenge but hopefully far less frequent as we near the end of treatment. After this little procedure she was happy to see several familiar faces and was quite the happy and well behaved little girl. It was as if a switch had been flipped in her brain.
The funny thing about Cook's is that I have always worn the fact that Sydney was an oncology patient at Cook's as a badge of pride. I know that sounds strange but it is true. I know Lynley loves everyone at Cook's but she certainly does not necessarily feel the same way about it that I do. I guess it was because of how I dealt with Sydney's diagnosis. My way of dealing with the fact that Sydney had neuroblastoma was to make it mean something. For me it was an opportunity. I was given an opportunity to take a bad situation and learn from it or to make something good happen from the experience. I was given a challenge by life - by God - and it was my duty, my responsibility, to make it mean something. So, when I walk into the oncology clinic at Cook's, I do it with a sense of pride. I do it because I was given Sydney and I am so thankful for the experience of her life and the opportunity to truly make my own mean something. In that sense it is a gift. In that sense I have been able to deal with the fear that still is a constant companion. I still feel safe when I dawn those doors.
I guess this goes to show that it may be easier to get cancer into remission than insanity out of my brain.
It was a gentle reminder that my purpose is more than words.
5:17 AM 10/16/2006
Today I am feeling the sucker punch of another family. Paul Saxon just got home from there first two week treatment of high dose 3F8. I have had such high hopes for them as they have had a difficult time getting Paul back into a position where they could even consider doing some type of immunotherapy. Since Paul's relapse in December of 2004 it has been a long and hard road of chemotherapy. At times he was able to breeze by on low dose oral VP16 and the like but for the entire 20 months since his little body has been fighting back with chemotherapy. This was supposed to be a great time to give his body a break from the toxicity and bring him back into remission. We all had high hopes. After all, we had see many, many kids respond to the high dose 3F8 where other therapies had failed. After two weeks of pretty rigorous and painful high dose 3F8 they got back home this weekend to discover a mass on his head. From what I can tell they are pretty sure that it is another tumor and they have all of the medical teams conferring to help find an answer. There are still several options on the table but none are as hopeful for Paul's family as the one treatment that he just failed. I know they will be considering many options.
This just absolutely breaks my heart. I really was so excited for them to get to the point where they were able to do 3F8. I have seen so many have such huge successes and such great response with 3F8 I just knew it would be the answer for Paul. To see therapy fail just breaks my heart and brings me back down to reality. I know the statistics. I know that 85% of kids respond to the 3F8 and those are such terrific odds for neuroblastoma treatment that I forget that sometimes it just doesn't work. I simply don't understand why some kids fail to respond. We are dealing with the same disease aren't we? It just makes no sense. I hate it. I have seen others not respond to 3F8 before but they are so few and far between you just never think it is going to happen. I feel so badly for Paul and his family. I only wish I knew the answer.
There is still MIBG therapy and a slew of different chemical cocktails to try. One of the ones that I am starting to change my thinking about is Nifurtimox in combination with chemotherapy. We originally saw this drug's data at the ANR conference. I should probably say that it was Neil Hutchinson and John London (fathers of other children) who brought it to my attention and, to be honest, I wasn't that excited. The data stems form a single child who developed chagas disease, a human tropical parasitic disease, that came from a transfusion that was tainted. Apparently she received some blood from someone who had just been in South America. From what I understand this child was transfusion dependent, having received some 80 transfusions through her standard therapy. I believe she was on A3793, the same upfront trial that Sydney had been on. Anyway, therapy had pretty much failed for this 5 year old little girl. Her neuroblastoma was considered chemotherapy resistant and they began salvage chemotherapy at about the same time that she acquired chagas from the blood transfusion. To treat the chagas they gave this little girl Nifurtimox. This combined treatment ended in a completely unexpected clinical remission for the little girl. So, you may infer that Nifurtimox had some effect on the neuroblastoma cell making it less resistant to chemotherapy. The great news is that Nifurtimox was few side effects and they are extremely mild in comparison to other therapies. Since this abstract was presented both John and Neil have gone through the arduous task of trying this combination on their kids. Penelope, John's daughter, who had been sent home to "die with dignity" over 2 months ago has started responding to the Nifurtimox/chemotherapy cocktail. We don't know a lot yet but we do know that the node on her neck has gotten smaller and her HVA/VMA has dropped significantly. There is no doubt she is moving in a better direction and she is doing it on a chemo cocktail that has failed for her before without the Nifurtimox. There are some theories on why it might be working but nothing definitive as of yet. The issue is that this is one of those treatments that few know about and if you are in relapse land it may very well be hope where other therapies have failed.
My purpose was been taken back but it is more committed than ever.
5:15 AM 10/17/2006
Yesterday was pretty close to back to normal. The kiddos were back in school and Ainsley was at home with Martha. After lunch DeeDee visited Sydney's school where she was a guest cook for the day. My mother decided that Snickerdoodles were the recipe of the day and had all of the kids knee deep in sugar and dough. She originally thought of having them make healthy snacks but I quickly kyboshed the idea. They were kids. They needed sugar - especially if I was not going to be there. From what I understand a great time was had by all. My mother felt as entertained as I did the last time I visited their class. It is so funny to hear what comes out of the mouths of babes. They have heard enough and they have just enough sense to put together some really pertinent statements. My favorite part is when they take something real, twist it, and then say it back to you. It is kind of like playing the game telephone. It is true, kids say the strangest things. Some of the great quotes from yesterday were about grandmothers having gray hair. Here is what my mother had to report: "One of the little boys said that his grandmother had grey hair. I commented that I was fighting it every step of the way. A little girl said that I could buy grey hair. Then, another little boy added that his grandmother had a wig and I could buy one. Miss McPheeters had a hard time controlling her laughter."
Later that afternoon I took Ainsley back to see Dr. Debbie. She was on the road to recovery but it is quite clear that she is not entirely well. She was still having that nasty side effect of waking up from a solid sleep screaming. Just in case, we elected to take her in for a look-see. As it turns out she is not completely over her ear infection. Although it is greatly improved it was likely it would return in the weeks to come if we simply finished the existing antibody course. Although the ear did not look severe enough to continue waking her from a dead Dr. Debbie put her on a course of Biaxin. Hopefully this will clear up the remains and deal with any lurking infection that we are unable to see.
Thankfully, Graham is completely healed . His only problem is that he has developed a permanent leak and a whine. The boy has mastered the ability to go to the bathroom like a big boy. In fact I can't remember the last time he made an accident. The problem is that he still thinks he needs to go to the restroom every five minutes. If we don't allow him to succumb to his obvious addiction we have to listen to the whine. "I have to go potty. Go potty Daddy. Make accident. Have to go potty daddy." Then, after he has finished ,we get to listen to the reverse whine as he scoots around the house with his pants around his ankles trying to convince someone to pull his pants up. "Need help. Can't do it. Can't put pants on." The irony in this display is that he is entirely capable of pulling up his own pants and, in fact, he always ends up doing it himself. The problem is that, for some reason, he will stumble around for the next five minutes with his little friend peeking out at the world whining about his pants being pulled up. Almost as soon as they are back on we are back to the "Got to go potty. Make poopoo. Make accident. Got to go potty."
Well I have to run. Ironically, I have to go to the potty.
Isn't purpose grand!
5:40 AM 10/18/2006
Good Morning! It has been a busy couple of days around the Dungan household and I anticipate that it will be getting busier in the days to come. I am heading to Houston for two days for a CNCF presentation to the Texas Children's Cancer Center research conference. Pat Tallungan will be giving the presentation but I will be there to offer moral support and to meet with the various faculty members. I should be back on Thursday afternoon but this will leave Lynley to fend for herself with the kiddos. As is par for the course when I go out of town in October we have a bit of a scare. Last night we got it and, to be honest, we really do not know what to make of it. Graham woke up about 10:30 PM crying. After a bit of trying to settle him we finally woke him enough to identify what the issue was. Apparently he has having some rather severe leg pain. He seemed to indicate that the pain was coming from his right shin but it is hard to tell with a half awake 2 and a half year old that loves to mimic his sister. You know, if we had not had the experience that we have had with childhood cancer we would write this off to the millions of different things this could be. Unfortunately, we have had experience with neuroblastoma and waking in the middle of the night with leg pain and it absolutely sends shivers down our spine to see it happen. In the end we gave the boy some Ibuprofen and he spent the rest of the night sleeping comfortably - with his elbow firmly implanted in my back. I am sure this is something incredibly benign but I would be lying to you if it did not send shivers up my spine. In this case, only time will tell.
On another note, I wanted to update everyone on Paul Saxon. It appears that he may not have progressed on the high dose 3F8 and the presumed spread of disease may have, in fact, simply been a side effect of treatment. Over time the node on Paul's head has shrunken and although it is still visible it is much smaller. Yesterday, they followed up with a CT scan and a bone scan and both have come back completely negative. In reality the lump on Paul's scalp could be from all types of things and the fact of the matter is that this therapy is so far out on the cutting edge no one really knows exactly what can be expected. It is great news but I think everyone is quietly celebrating and no one wants to get too comfortable. I can speak first hand (I know many who will read this can as well) and say that, although this is incredible news, this little spot in limbo land feels much different. It may seem like everyone should be up and dancing it is difficult to get past the fear that still exists. For the first time since this scare arose you are able to breath but not exhale fully. Something just won't let you believe it is all clear. I think it is a protection mechanism. It is a way protect hope and keep it from being completely decimated again. It is a good feeling but not the sense of relief that one might expect. That can and will, however, come with time. For the meantime we sit and we watch and we wait and we try and enjoy every minute in between. I am cautiously optimistic and entirely thankful that things appear differently than we first assumed. This could be the greatest news of all. If you pray, keep Paul with you.
There is all kinds of purpose in this world.
5:24 AM 10/20/2006
It feels good to be back from Houston. I had a great night of rest last night and I am ready to hit the ground running. My trip to Houston was a jam packed, pedal to the metal tour of the neuroblastoma program at Texas Children's. It started almost immediately upon my arrival in Houston and it did not let up until I stepped back into my car yesterday afternoon. I arrived in Houston at about 1:30 PM on Wednesday. The bulk of my afternoon was spent meeting with Pat Tallungan about CNCF business. We are both absolutely buried in phone calls and opportunities for the CNCF and it is a challenge to get every thing prioritized. However, we are ecstatic at how well things are going for the foundation. We are truly sitting at a point with the foundation that is unlike any other. There is no doubt that we are going to explode over the next year or two.
After meeting with Pat we met Dr. Heidi Russell and Dr. Jason Shohet for dinner. We must have been having a pretty good time because the next thing I knew it was about 10:30 PM. We had spent the time talking about neuroblastoma and what our dreams and aspirations were concerning research. After a few blinks it was morning again and we were ushered off to an auditorium at Texas Children's for our presentation.. The purpose of our presentation was to provide the 75 member faculty of the cancer center with our perspectives as parents of children with neuroblastoma. Pat presented to oncologists, researchers, child life specialists and the like and she did an excellent job of painting the picture of what life was like in our world. She explained our needs and what we needed from the medical community. After the presentation we fielded many questions and I think it was a learning experience for all. Many were surprised by our perspectives and appreciated our honesty. I think it was an incredibly valuable experience. Even though we both (physicians and parents) work in the same world, what we take away from the experience is entirely different. I think we shed some light into our world.
The remainder of the morning we met with various departments at the hospital. The purpose was two fold. It was to meet with them to help share our perspective and to learn of ways that we could collaborate to benefit the families and children of neuroblastoma and, to an extent, cancer in general. We identified many opportunities and I think they will be a part of many of he educational programs that we are in the process of putting together. These include smaller regional CNCF parent's conferences, collaboration on neuroblastoma materials, and an ongoing series of online seminars and presentations covering various aspects of neuroblastoma. After these discussions we spent quite a bit of time meeting with the research teams to get a better handle on what was being studied at Texas Children's. They are asking some very interesting research questions and many are inline with the CNCF's research goals. There is no doubt that we will be working with them to further there research goals and initiatives.
I was blown away by the facility itself. Although I had been there before I did not have access to many of the areas that we saw yesterday. I knew that they had the only neuroblastoma program in Texas but I had no concept of its size or reach. I had no idea that Texas Children's had the largest pediatric oncology program in the United States and that it was the largest pediatric hospital as well. The neuroblastoma program saw some 36 stage IV patients last year and was working on research projects with 3 different research laboratories within the facility. It was, by far, the most impressive facility that I had ever seen. They have done an incredible job to improve the quality of life for the patients in their care. There really isn't enough time to go over everything that we discussed or saw but I can tell you that I came away from the experience with my mind buzzing. I just wish I could do this full time. We could do so much.
It just made my purpose that much more evident.
5:00 AM 10/23/2006
The Dungan five had another great weekend. Everybody seems to have made their way back into the land of the living and the all seem pretty content. We began the weekend with a trip to the humane society where we selected a new family kitten. Now first, you should know. I am not a kitten guy. In fact, I don't really care for cats. The one thing that you can count on however is the natural attraction of any cat for me. They can't help it. They love me and they just can't keep themselves from cuddling and loving me. In fact, as I type this, I have one cat on my shoulder and another lounging at my side. In cat, I am a stud muffin and completely irresistible but I guess that really isn't the important part. After all, the cat is for the kids who, as you might guess, the kitten really doesn't care for. Cats are attracted to ambivalence and, well, my kiddos don't exactly exude that. They are more the in your face and pull your tail type. Once again, I was tricked into getting another cat for the sake of the children and in the end I ended up with the undying love and devotion of another feline looking for protection.
The kiddos really do seem to love the cat and it has been a great motivator for good behavior around the house. Just about any behavior can be modified with positive or negative reinforcement with the kitty. Eat your vegetables and you can play with the kitty. Clean up the play room and you can play with the kitty. Don't beat your sister and you can play with the kitty. It is perhaps the most effective kid training tool I have ever purchased. Unfortunately, as soon as we leave the house they seem to forget all of their kitty training and even the fact that they have a kitten. I will give you a perfect example.
On Friday we had a parent/teacher meeting with Sydney's teacher. I am happy to report that Sydney is doing really well. Originally we were concerned about socialization and her ability to keep up with the classroom but we have learned that she is doing exceptionally well. She is meeting all of her milestones and seems to be fully integrated and engaged. She is normal and I think this is an important distinction. She is normal in the sense of a normal child not as a cancer survivor. I am please to learn that she isn't any more "special" than her personality would allow. One area that she needs some work on is her ability to associate sounds with letters. I think this is particularly difficult for her with her hearing loss, however, it should be relatively easy to overcome. The teachers gave us some guidance as to what types of activities and games would be most useful in helping us to teach her this skill. This weekend we set out to the store to find some training tools. We spent quite a bit of time in the toy isle finding the best games for teaching phonetics and reading. In the end, Sydney was incredibly excited about the specialized attention and the fact that we were going to be working with her on how to read. Unfortunately this excitement turned into giddiness in the store which spread like wildfire throughout our remaining forest of kiddos. The next thing I knew we had a full out epidemic of misbehavior. I tried using the kitten as a motivator but it simply did not work. In the end and grasping at straws we finally used our newfound training toys as leverage for good behavior. We told Sydney that if she did not shape up and start acting like a princess she would not get to play with her new toys. She busted out in tears and began to scream "If you don't let me play with those toys I will never learn to read and you'll be sorry. Waa. I will never learn to read." Wow, she really had the waterworks going and the looks from passersby were priceless. How cruel we were by not teaching our daughter to read. See, I told you, she is older and smarter and normal - even if she can't yet read.
My purpose has to be smarter as well with or without a kitten.
5:25 AM 10/24/2006
I am still trying to figure out why this kitten loves me so. It is unnatural if you ask me. Regardless, here I find myself, yet again, trying to write with a kitten on my arm. Oh joy of joys. I guess I can rank this right up there with all of the other things we do for our children to make them happy. Yesterday was another good day for us but it was not so good for Martha. Unfortunately, Martha's grandson is back in the ICU. About a month ago he fell and hit his head on a concrete curb. It was either the cause of the fall or the result of the fall but he has been having seizures pretty regularly ever since. It appears they are becoming more regular and more intense. Over the weekend they were readmitted into the hospital and that is where they have been ever since.
We really don't have many answers. Unfortunately, Martha and her family are predominantly Spanish speaking and much is lost in the translation. It seems like the family is really at a loss as to what is going on. Fortunately, one of Martha's daughter's is also a nurse so we are hoping that the communication issue is just between the other family members.
This makes me wonder about the challenges for families that do not speak in the native tongue of where they are being treated and have ventured into the world of neuroblastoma. Pediatric cancer is already a tough enough road but think of how isolating it would be if you could not communicate with your nurses and doctors. The fear must be overwhelming. We were so lucky because not only did we know the language but we also had the benefit of technology and the ability to reach out to others in our same situation. That power is huge in having that sense of control. I can't imagine what this journey would be like with out it. It just brings back the thought that it could always be worse.
It will be a difficult week for us as we scramble to make sure that Ainsley is covered but nothing compared to what I fear her family is enduring.
You still have purpose even when you can't comprehend. My worry is that it is totally encased in fear.
4:51 10/25/2006
Yesterday, I received a call from Sydney's teacher. Sydney had fallen down and bumped her head. She had a good size knot on her head and her eyes were extremely dilated. I asked if she had thrown up and they said "no" and I asked if she had been knocked unconscious and they, again, said "no." For me, this was enough but they still preferred that I come and pick her up. To be honest, I wasn't really all that concerned. The dilation in Sydney's eyes is a fairly common sight for me. Ever since she was treated with the ch14.18 she has had extremely reactive and on occasion dilated pupils. At the time we thought it was just one of the rarer side effects of antibody therapy called pupilitonia. These ocular symptoms can last for a long time but I am thinking that two and a half years would be longer than the norm. They call this side effect "parasympathetic denervation" and they believe that it is a temporary condition caused by the anti GD2 antibodies such as ch14.18, hu14.18, and 3F8. It can last for six months plus but I think Sydney's continuing issues can be explained away by the fact that she is still receiving the antibodies. Regardless, over time I have been tempered by the regular appearance of dilated pupils and the fact that Sydney's were dilated did not alarm me. Of course, I had this information and Sydney's teacher did not. So I made my way to the school to try and alleviate their concerns. When I arrived at Sydney's school I found her laying down and milking all of the attention for what it is worth. The nurse had done a terrific job of providing ice and reducing the swelling but Sydney still had a pretty good bump above her left eye. I really wasn't given much of an option but to take her home from school. Sydney really did not want to leave. She wanted to go back to play with her friends. Nonetheless, I don't think the school was too keen on accepting the liability of keeping her around. Apparently, with head injuries, one bonk and you are out. I talked to her a bit to ensure that we weren't dealing with anything more sinister and then we made our way home where she spent the rest of the day playing and watching TV. Sydney never mentioned her head again. Until, of course, we were getting ready for bed and she wanted one of those little purple pills. In the end she made a pretty full recovery. She isn't the prettiest thing to look at but the important thing is that she is just fine.
My purpose has been tempered.
6:13 AM 10/26/2007
Oddly enough, the kitten is still alive. I think that is a huge testament to how much I love my children. Surely no ordinary parent could possibly endure this. That cat is a nonstop meowing menace. I would put it out of its misery right now if it did not love me so much. It would simply break its "wittle" heart. I have tried to get Lynley to do the deed but she just mumbles something about me being insane and grumpy when I don't get a good night's rest. But wow, I still think that if it weren't for those kiddos I would be grilling cat tonight. I just never thought my nemesis would fit in the palm of my hand.
Regardless, I am up late and tired. I am somewhat happy to report that we got through yesterday without any doctor's visits or emergency trips to the school. Everyone seems to be in working order which is nice. This break in the chaos has given Lynley and I an opportunity to discuss and focus on Sydney's future in treatment. By the books, Sydney is nearing the end of her trial on 3F8 and now we have to plan on what may or may not come next. As you may remember I am the aggressive one and Lynley is the one that protects Sydney's quality of life. It is this mix between Lynley and I that I think leads us to make as balanced of a decision as possible.
In order, to really grasp what opportunities lay before Sydney I think we have to have a good understanding of where she is. Sydney has now been in treatment for almost 3 and a half years and she has shown no evidence of disease for at least 2 years and quite possibly 3. The great unknown is still that funky MRI and immunocytology in September of 2004. If Sydney relapsed, history and experience would lead one to believe that Sydney would eventually succumb to the disease. In that sense, I think it is always important to continually search for treatment options that preserve her quality of life and offer hope to stave off disease for more time. If Sydney relapsed she could live 1 more year, 2 more years, 5 more years, or 10 and in that time miracles could happen, cures could be found, and life could be lived. In fact, she could be one of those long time relapse survivors that just continue to live. They are out there. They are few and far between but they are out there. They are 5 and 10 years out of treatment and surviving. They are the hope that so many of us hang our hats on.
Now, if Sydney never relapsed. She has a chance. I don't know that her overall odds have really improved but it would seem that the longer she lives cancer free the more likely she would be to survive. Regardless of what you ultimately believe about whether she relapsed or not the fact still remains that she was n-myc amplified and that is not a good indicator. Although the line is not permanently imprinted in the sand many with n-myc amplification ultimately fair poorly and we have to remember that in balancing treatment with quality of life.
There will be more on this in the coming days. We are planning our future.
We have purpose.
5:30 AM 10/27/2006
Okay, so just as quickly as I mention how well we all feel I discover a collection of red bumps on Sydney. There are about 15 of the little bumps on her right thigh. At first we thought she may have been bitten by something over night but late last night I received a phone call from one of Sydney's teachers that one of the kids in her class had the chicken pox. So, now I am thinking that this coincidence is a little too coincidental and I am planning for the worst. One of the problems is the fact that neither Sydney nor I have ever had the chicken pox and worse yet neither of us have been vaccinated. Today will be a mad rush to get the both of us vaccinated. It may not prevent an outbreak of the itchy little buggers but it will hopefully reduce their intensity. The funny thing is that ever since I heard of this little conundrum I have become the itchiest person in the world. I just can't stop feeling the tingly little sensation of an itch. At this point I know it is in my mind but between that and the cat on my shoulder my world certainly feels like it is going off the deep end.
Even my purpose is itchy!
5:08 AM 10/30/2006
Hello from itchy central. We still don't have a confirmed diagnosis of chicken pox but I think that is more related to the fact that Dr. Debbie wasn't interested in seeing Sydney. Our description was apparently enough. Over the past few days the little bumps have spread and now they are cropping up on different parts of her body and the old ones are beginning to scab over. Thankfully the itchiness has been manageable and she has remained fairly comfortable. I, on the other hand, am still very itchy. I don't have any red bumps and no other outward signs of the chicken pox so I think this proves that, once and for all , I am just mental. We are watching Graham and Ainsley carefully and so far they seem to have skated by. However, it is still early in our chicken pox exposure and only time will tell.
I have really wanted to get back to the subject of neuroblastoma and what our future might hold. As usual, our lives got a little busy and I just never got the opportunity to get our thoughts down on paper. However, in the next few months we will have to make some tough decisions and now is the time to prepare. I really don't know if I am right but I do have some theories of where we are so I am going to use my diary as a place to work these issues out in my mind. At times it may seem like I am just writing a stream of consciousness and at others I might even make sense, but I think the journey of what goes through a parents mind is as important as the decision that is made. Many ask me why we chose a certain path for Sydney and the answer is never simple. Sometimes there is no one answer. Sometimes I even forget. We think and think and we study and study and we pray and pray and we hope we do the right thing. Ultimately, we will have to live with all of the decisions that we make regarding our child's treatment. Hold on, it will be a bumpy ride.
First off, I will freely admit that I am not excited about the idea of antibody therapy ending. In my mind, I truly believe it has added a tremendous amount of quality time to Sydney's life. If it was not for antibody therapy I really do not believe that we would be where we are today. It isn't that I have some false hope of what 3F8 does and it isn't that I believe it is some magic bullet. My reasons are simple. Many families put there children through 3F8 in the hope that it will cure their children. They hope that it will create some type of long lasting immunity or vaccine like protection. To be honest (and I could be wrong) I really don't believe in all of that. What I do believe in is its clinical utility as a weapon to kill neuroblastoma cells in marrow and on bone. That is what is proven. That is what we know as fact. The other stuff is pie in the sky. It is theory, and hope, and possibility, but it isn't fact. It isn't what we know. The theory that 3F8 produces HAMA which produces AB3 which produces some kind of long lasting immunity is a grand idea. It just is not proven. In fact, (IN MY OPINION) many kids survive neuroblastoma after 3F8 not because of this notion of immunity but simply because of the fact that 3F8 kills neuroblastoma cells. It is the routine barrage of an agent that is effective at killing neuroblastoma that eventually wins. It eventually kills all of the cells. Again, that is all my opinion, but I think it is an important distinction and, if I am right, the notion that more 3F8 is better than less certainly holds water. My theory with Sydney is that if she did relapse the 3F8 has been enough to manage her disease. The constant barrage of 3F8 has continually killed neuroblastoma cells in Sydney's body. With as aggressive of disease as Sydney has she certainly would have progressed if it was not doing something. It is my belief that when she started the 3F8 she had a small enough amount of disease that the 3F8 was able to eventually overcome and kill it. In other words, the routine treatment cycles of the antibody was able to kill neuroblastoma quicker that it was growing and eventually at some point we might even kill it all. Did we reach that point? Is the 13th round of antibodies going to be the fatal punch? Is it the 14th? Or, was it the 4th? We don't know. We don't have a test that is sensitive enough to know. But, why stop if we don't know? As benign as this treatment is, why stop it? If it continues to do its job, why not do it until she is 40? If she relapsed, we are told by most doctors that she will eventually succumb to the disease. If that is truly the case, then why stop something that appears to be working? Why are we concerned about late effects when (a) there apparently aren't any at 15 years post treatment and (b) most believe that the relapsed kids won't survive that long anyway? Why stop? Am I making sense? Is this logical? Have I been living in this world so long that I no longer have perspective? As far as I can tell, nothing has changed. I am still fighting for Sydney's life here.
Well, crud, the cat is on my shoulder and it is time to run this morning. I will have to get back to this tomorrow. There is much, much more to say.
Purpose is not black and white.
4:20 AM 10/31/2006
Happy Halloween! The kids, chicken pox or not, could not be happier and, to be honest, I am pretty excited about it as well. Last year's holiday still rings loud and clear in my mind and I remember how happy Sydney and Graham were. We had just gotten out of the hospital earlier that day and decided to suit the kids up and take them begging for candy. Of all of the holidays it was my favorite to watch them last year. The had such a wonderful time. Seeing them like that just makes my heart jump for joy. When I was growing up I was always saddened when I outgrew something because I remembered how much joy I felt about the experience. I knew that I may never feel that way again. What I did not realize was how much better it would feel watching my children share those experiences all over again.
Sydney's spots have crusted over on her legs and she continues to have great energy and appears to have managed the itchiness far better than her father who is still yet to get a single chicken pock. It really seems like this has gone by much quicker for Sydney that we had anticipated but all of her spots seem to have crusted over. Perhaps some of her original vaccination survived the transplant. Perhaps, she just had a really mild case or, perhaps, the worst is yet to come. Regardless, she technically meets the requirements of not being contageous and she certainly seems no worse for the wear. We will be keeping her home again today and watching her closely for any signs of continued infection but I am hopeful that we are moving out of the world of the chicken pox. Frankly, I don't think I can take the itchiness anymore.
Yesterday, I talked about the fact that I wanted Sydney to continue to take antibodies even though our protocol is coming to an end. If we are going to continue to take antibodies I will need to convince Kushner that it is in Sydney's best interest and fits within the protocol. This probably won't surprise anyone but I have several arguments. The best is what I call my "Cute Little Caucasian White Girl Discrimination Suit" and it is directly related to the recent protocol changes that switched Sydney's treatment cycle from two weeks to one week long. By making this change to the protocol they have effectively added over 13 weeks to the protocol. Think about it. By reducing treatment from two weeks to one week 13 times they have added 13 weeks. They have not changed the time between treatment cycles just the cycles themselves. So, since the protocol basically reads that you get up to two years of antibody treatment assuming you do not HAMA, you would receive 2 more treatment cycles of 3F8 than the kids that were under the two week cycle regimen.. The kids starting the protocol right now will be eligible for up to 15 cycles of 3F8 whereas Sydney was only eligible for 13. Why should she not receive the same amount of treatment as the other kids that are starting treatment right now? It is because of discrimination against cute little white Caucasian girls! That is why! (Please do not take me seriously.) Any way, it is a legitimate gripe and a perfect come back to Kushner's comment that I know he will make which is "There is no evidence that 15 cycles of treatment is any better than 13." To which my comment will be "I thought you generally believed more 3F8 was better than less." Followed by "and she would also have the same opportunity to develop a HAMA as those beginning treatment now." which is an important point and effectively argues on both sides of the coin. The current belief is that those that develop HAMA after 4 cycles of 3F8 typically fair better than those that never develop a HAMA. This will be my opportunity to test and see if that concept still rings true. It has been over two years before I had heard someone utter that assumption. However, it is an important point because if it is the case you would have to argue that giving Sydney further opportunities to develop a HAMA would be in her best interest. Finally, I will make the same arguments that I made yesterday regarding the proven clinical utility of 3F8 at cleaning the marrow and our shared theories that, generally, more 3F8 is better than less. In the end, I think I stand on some fairly strong ground. Whether you believe that the HAMA is a good response (eventually) or not I think we can argue that more antibody therapy is better than none for Sydney. I have argued on both sides and drawn the same conclusion. Hmm. What am I missing?
I have to run but tomorrow I want to take a look at the other side of the coin. What are the risks to Sydney? What are the potential side effects? What impact on her quality of life would more treatment have?
Purpose would be so much more fun if lives were not balancing on it.
4:20 AM 11/1/2006
I was right about Halloween. The kids had an absolute blast. Last night had to rank up there as some of the most fun ever had by the kids. We did spend a little time trick or treating but the bulk of our time was spent waching the kids hand out candy at the front door. I imagine we had well over 300 trick or treaters and Sydney and Graham, dressed as Wonder Woman and Superman, gave candy out to each and every one of them. They truly felt like the super heroes that they were. I think they had more fun handing candy out than they did trick or treating. Lynley and I just sat in the background and watched as they ran the show.
There were a myriad of comments last night that just left us in stitches. Most were uttered by Graham. He still lives under the delusion that he is the actual Superman and takes offense at people that do not realize it. I can't tell you how many times last night someone said to him "Aren't you the cute little Superman" and he would look at them smugly dead-faced and say "Yes, I am." or "You got it." He takes it so seriously - so seriously I am beginning to wonder myself. At times he was somewhat torn because you could tell that he was scared by some of the trick or treaters costumes but still felt the obligation to be Superman and not his alter ego Graham Dungan. After they would leave you would hear Graham mutter under his breath "Wow, scary guy, Pheew!" The other funny thing they would do is comment on everyone's costumes. First off, they called everyone a "creature" but they treated everyone as if they themselves were adults. There is nothing quite like the site of a 2 and a 5 year old telling a 10 year old that he has a cute little costume or that he was a cute little boy. They were clearly emulating the many adults that had met them at the doors earlier in the evening. All in all, I know it was a blast for them and for Lynley and I it was an opportunity to just sit back and watch our kids have the time in our lives. It was entertainment for all.
I know I said that I would talk more about our future plans regarding treatment this morning but I just don't feel like it right now. My mind isn't in the right place. Perhaps tomorrow I will be back.
Some days I just want to enjoy my purpii.
5:03 AM 11/2/2007
I have grown to dislike talking about the side effects of 3F8. Sydney has endured them for so long I think we have all gotten used to them. The shock and awe has warn off. To us, it has become another chore - just something else that we do. Sydney has learned to cope with the pain and treatment weeks are pretty much in cruise drive. Sydney can do it all by herself. These days I try and help her but she pretty much has it worked out in her mind of exactly how to deal with it. I am handy though. I am able to cover her with a blanket, tell her it is going to get better, and watch her vitals for a sign of more or less Dilaudad or for when she needs oxygen. The rest of it is all her and she handles it so well that I have been trained to rarely give it another thought. Sure, I hate to see her in pain but that is one trade off I am willing to endure for the hope that we are winning this battle. I am sure my impression of this process would be different if Sydney resented treatment or if she did not walk into the day hospital everyday with a huge smile ready to start another round of therapy. When it comes to 3F8 treatment, it is her attitude and our experience that gives me such deeply rosy shaded glasses.
Whenever I talk to another set of parents about the 3F8 I always have to work to tell them how bad it is. I feel like I am making it up. My memory has faded since the first time Sydney endured antibody therapy and about all I can remember to say is that they will hate me after the first few days of treatment and think that I am out of my gourd. I then tell them "But, it will get better. It will get much better." Truth be known, I think many of them think I am out of my mind. But, they are always also the first ones to say it was worth it once they have gotten those first few treatments under their belts. I also have to remember that it is not a rosy experience for everyone. Although I can't remember anyone having any long term side effects from treatment I have certainly have seen some scary things. I remember Hanna Douglas fighting with extremely high blood pressure and heart rate. I remember Carolyn Coveney being over-dosed (not due to negligence) on some of the pain medications. I remember many families developing allergies to the GM-CSF that were so severe that they had trouble breathing. To this day Dawson DeCap still takes his 3F8 with out the GM-CSF. There were others too, with allergies and reactions and I think we all have had those days that seemed like they would never end. On occasion there are fevers, blood pressure issues, heart rate concerns, and allergic reactions. It is part of what they endure in the quest for survival.
Then there are cases like Paul Saxon. He and his family and I have traveled this world so closely that I feel the family's pain personally. I think about them constantly and am always looking for a way to figure out how I can help them. I would not take credit for them choosing to go to Sloan for 3F8 but I would think that Sydney's good experience would have certainly had an impact on their decision. Their experience has been nothing short of a nightmare. Now, first off, Paul is on a different trial than Sydney. In fact, he is currently on a dose that is 10 times higher than the one that Sydney received for 10+ rounds. The dose is so high that Paul is one of the first to try it. Paul's pain through the treatment was manageable. It wasn't good but it was livable. The problem really began when he got home a little over two weeks ago. Since then he has been in the hospital much of the time and I believe he is still being treated with narcotics for the pain he is experiencing. No one knows why he is still experiencing pain. Scans have continually come back negative and they will be doing an MIBG scan today to further rule disease out. Some have called his problems serum sickness and some of his other issues can probably be ruled as unrelated to the actual 3F8 but, the fact remains that, he has suffered for nearly two weeks. Even though Paul is not doing the same trial. Even though they are doing a phase I and we are doing a phase II it still pains me to see what Paul had to endure with this therapy. I feel guilty because I did not prepare them better. I told them it would be bad. I just did not know it would mean this. I tell you this story not for your sympathy but to illustrate the point that we don't always know what the side effects will be. Even if our experience was a great one it does not mean everyone else's will be the same and, in fact, it does not mean ours will remain this way. We are on the cutting edge of science and there are often few answers as to what ails us.
The good side to all of this and the point that I think is important to make is: I have never seen anyone die from 3F8 and, in fact, I have never seen anyone have long term issues. I have however, seen those things with neuroblastoma, with chemotherapy, with transplant, and with radiation. In the grand scheme of things 3F8 still appears fairly benign.
When looking at purpose it is always good to take off those rose colored glasses and to take a look at reality.
4:44 AM 11/3/2006
In rereading my diary for yesterday I was somewhat bothered by what I wrote and how it sounded. My conclusion regarding 3F8 as being fairly benign was in regards to Sydney. When I read it later it seemed like it could also mean that Paul's experience was an "acceptable" side effect. I want to make it clear that I did not mean that. In fact, after seeing Paul's experience and knowing that another family is having difficulties at this dosing level I would have a tough time recommending the high dose (heated) therapy to anyone. Unfortunately, that is the really bad thing about phase I trials. By their very design, therapy will most likely fail for some and be too toxic for others. It isn't happenstance. It isn't a mere coincidence. It is by design.
For those that don't know, Phase I trials are generally designed to determine the maximum tolerated dose of a given agent. They are attempting to ask the basic question "How much of this drug can I give to a child before it creates some major side effects?" To answer this seemingly simple question you are going to have give kids enough drug to give them those side effects. So, as I said before, generally speaking, overdosing a child on a drug is part of the trial. That is the only way we know how much is too much to give. Sometimes, but rarely, we don't need to give a dose that is likely to create severe side effects. Sometimes they are able to achieve the maximum effectiveness without giving any more drug.
The other side of the coin are generally the first people to enter a phase I trial. The FDA and child advocacy groups go out of their way to protect the kids with dosing. Unfortunately, this also has the byproduct of testing drugs on kids where we know that the dose given is not going to be effective. In other words, we know from mouse models and adults that the amount given to these kids will not achieve the desired result. So, in many phase I trials, we have yet another group that is going to most likely fair poorly because the won't receive enough drug to truly make a difference.
In a phase I trial for neuroblastoma they generally use a 3 + 3 model. This means that they will give 3 children the minimum dose. If it is well tolerated by all of the children they will escalate the amount of drug that is given to 3 more children. This process will continue until they start experiencing side effects or until they have achieved their goals of the the trial. However, it is usually not reached until they discover some sort of toxicity. The trial becomes more complicated at this point and occasionally they back down doses or try more kids at a particular dosing level but this is generally how it goes.
So, by its very definition, some kids will receive too little drug to make a difference and some kids will receive too much drug and have toxicities from therapy. However, the kids somewhere in the middle might have a chance at receiving some benefit. If the drug works and if they were given the right dose they may just actually benefit from the trial. This is why it is difficult to look at a phase I trial and know whether the agent is effective or not. For example, 15 kids could be in a phase I trial. Of these 15, 3 could die from toxicity, 9 could progress and eventually succumb to the disease, 1 could have stable disease and 2 could be cleared of disease. That doesn't sound good does it. In reality, it could be great. In reality this could be what a phase I trial of the cure for neuroblastoma could look like. I don't say this to scare anyone. There are examples where agents can continue to be more and more effective until the final dose is achieved. I happen to think that is what we will find the 3F8 high dose trial but it is certainly not the norm. Phase I trials are important - scary - but important. Do your research and make your best guess. That is unfortunately all we can do.
There is no doubt about it. Phase 1 trials are tricky to comprehend and it is even trickier to figure out if your child will benefit from the treatment given the dosing schedule. This is why I always complain about trial design and that I think we need to be smarter about how we design trials for our children. There are solutions to trial design that we should be looking into. We should be considering multi armed trials, intrapatient dose escalation, and achieving adequate dosing levels in our early adopters. It isn't only about the science. It is about our kids.
Please pray that Paul finds comfort.
With hope and purpose - until another time.
5:39 AM 11/6/2006
There are a lot of times when I forget that anyone actually reads this diary. Although I hope it is helpful to others and I think it will be a great gift for Sydney on her 18th birthday, I still do much of my writing in the diary for myself. To this day it is still therapeutic and it helps me figure out what I really think. However, there are other times when I am very aware of the fact that others read my diary and that becomes so much more apparent when I write about the 3F8. When I do write about it I know what is coming and the last week was no different. I don't know how many emails I received but it sure seemed like a lot. Most were supportive, some asked that a clarify some things, and then there are always the group of people that sit on entirely opposite sides of the 3F8 question and want to weigh in on the subject. So we all have the same frame of reference, there are two groups that really don't care for my writing - those that really believe in the 3F8 and those that don't. I will get to those later.
First off, for the first time in history (I think) I have gone back in my diary and made some additions. There were some that were concerned that my talk about some of the kiddos that had side effects was misleading and I see their point. First, I stated that Carolyn was overdosed. While this is true I want to make sure that I make it very clear that this was not due to negligence. It was a very strange sequence of events that led to the incident and I don't think anyone could have expected Carolyn's reaction. The team at Sloan should actually be credited for their fast action and caring response. Secondly, I also discussed Hanna Douglas having some extremely high blood pressures and heart rates. While this was also true it was more of a situation where an existing condition appears to be he culprit. 3F8 just aggravated the condition and the situation was more clear while her body was stressed.
Now, with all of that being said it really does not change my point. Being in 3F8 treatment does carry some risks. Although most of these incidents had very little to do with the actual 3F8, the kids would have never been in those positions without being in treatment. When the choice is no treatment versus 3F8 that is something that you have to take into consideration. I still maintain that I have never seen anyone die of a toxicity related to 3F8 (I certainly have with chemo) and, in my mind at least, the benefit far outweighs the risks. So, when I make my decision about Sydney that is what I think about it.
Secondly, someone actually challenged me regarding whether I would really not "recommend" the heat modified (high dose) 3F8 to another family. This was someone that knew me too well. The fact remains that I have seen this treatment really help some kids and they know that. I have seen it save lives and work where all other treatments have failed. Now, knowing what I do about phase I trials would I still not suggest someone look into it for their child if I thought it might benefit them? Of course not. In fact, if I thought it could help Sydney and she was eligible I would be in New York in a second. BUT, I would be full of questions and I could guarantee I would wear the team out. I would want to know every detail about this dosing level. I would want to know what has happened to the other kids at this dosing level. I would want a plan in place to manage the pain. I would be all over them. I would be all about full disclosure. But, you are right, I would probably not, not at least recommend that they call the team at Sloan and grill them. Kuddos, I must be more transparent that I thought.
The rest of the email I received was from the ones that sit on the fringes of 3F8 - those that believe I don't tout 3F8 enough and those that think I tout them too much. Both sides have some merit but neither is absolute. In fact, I have stood toe to toe arguing with the best of the best when it comes to this subject. I can't tell you how many times I have aggravated oncologists across the country by arguing about the efficacy of 3F8 and, on the other side of the coin, I have argued with Kushner and Cheung about what is really known about the 3F8. Unfortunately, I really don't have enough time to get into both of these sides of the spectrum today but it is something that I think needs to be addressed. I know that as long as I continue to write I will continue to have one side or the other mad at me but it really does not change my perspective. When I make a decision for Sydney I have to base it on what I know and what is fact. It is not gospel. It is not black and white. It is simply what I think about when I am trying to decide what is best to do for my daughter to save her life.
It is my purpose.
5:12 AM 11/7/2006
Sydney went back to school yesterday. It is so good to get her back into the swing of things. I don't know who was going more stir crazy with her around the house, Sydney or everyone else. I am really happy with how well she tolerated the chicken pox. In all due honesty she handled the itchiness far better than I and I did not even have a single "pox" appear. In fact, to this day, I am still itching. Regardless, Sydney must have eventually had about 50 chicken pox appear on her body and I only caught her scratching a few times. The rest of the time she was off and running, creating havoc around the household. She never seemed even the least bit sick to me. The first day back at school was a treat for Sydney. She was so happy to be back with her friends. It is these ordinary things that seem to be so valuable to all of us.
Now, back to where I was yesterday. Ever since I have been involved in the world of neuroblastoma there has been an interesting phenomenon and that is the disconnect between those that go to Sloan and those that do not. I remember many intense rivalries and debates between many on the NBlast list (the neuroblastoma listserv). I tried to stay away from those discussions because, quite frankly, they just made me uncomfortable and I never felt like either side was necessarily right. There was always some argument about who had the best surgeon, or what the best hospital was, or who had the best neuroblastoma program. I always vowed to myself to keep an open mind about what I learned and what I saw.
There is no doubt that there is a phenomenon at Sloan and I think it has even affected me to a certain extent. It is this sense that something truly remarkable is going on there. It isn't a baseless statement but let me see if I can explain why I think so many have that feeling. Like any hospital around the country the neuroblastoma patients tend to clump together and talk about neuroblastoma and their child's experiences. With as many patients as Sloan Kettering sees it does not take long for you to meet 20 or even 50 different families of children with neuroblastoma. Before long you have heard many of the stories and a common theme seems to appear. Most were told not to come to Sloan Kettering. Most were told that nothing was proven and that they were going there for false hope. Many families are there because their own doctors gave up and they were left with no other alternative. So, here you are. Stuck with this group of hard luck stories, desperate parents, and neuroblastoma outcasts. It is not hard to invest in these people's stories and their lives and this sense of it is us against the world starts to develop. This is further complicated by the fact that, for whatever the reason, most of these kids begin to respond. Now you are armed with all of these real life examples of kids that were literally sent home to die but instead came to Sloan and now they are responding or free of disease. These parents have seen it time and again through their very own eyes and not only is their child responding and surviving but many of those around them are doing the same thing. Soon enough your old friends are leaving and going back to their lives and new ones are coming through the door and you begin to watch this process all over again.
Now, I am not saying that everyone survives. Not everyone makes it through chemo, not every one stays clean, not everyone responds to every agent tried but there are so many people you have met who, listening to other oncologists, aren't supposed to be walking around this world that are. It is as though you are surrounded by miracle stories. All of these people who were told not to go because it was unproven, and because it was voodoo are now walking around in elementary schools. After experiencing this kind of success it is really hard not to suggest Sloan to almost everyone you meet. The fact remains that they (the parents of these children) want all of our children to survive and those successes are the ones that they know. It isn't voodoo. It isn't magic. They have just seen success and they want to share their miracles.
So, when you hear someone from Sloan say that they think they have the best surgeon in the world, it is generally because of their experience. In fact, let's just take a moment to look at surgery. First off, Sydney did not have her surgery at Sloan. However, I can't tell you how many times I have been told by a family that no one else would do their surgery but Dr. LaQuaglia at Sloan Kettering. I can't tell you how many times a surgeon has gone in to do a partial resection at another hospital only to be followed by a complete resection by Dr. LaQuaglia. I can't tell you how many times I have heard him come out of surgery to tell parents that he got all of the tumor out when everyone around the world said it could not be done. Now, on the other side of the coin, I can't tell you how many stories I have heard about physicians around the world doing partial resections. I can't tell you how many times those very same patients have gone back under the knife at Sloan Kettering and I can't tell you how many ended up with complete resections because of his hands. I can't tell you how many countless stories I have heard about this man and how many of his patients I have met first hand. I can't tell you how many successes I have seen with my very own eyes but there have been many. Now, if I knew someone was due to have a surgery that was particularly difficult who do you think I would suggest. If I was going to give the best possible advice I could what would it be? If I had your child's very best interest at heart what would you expect me to say? The answer is hidden in the Sloan phenomenon. It is emotional and anecdotal and not always based in real hard solid fact but there are so many successes we simply can't help ourselves. In this world the evidence is overwhelming.
Don't write to me yet. Tomorrow I will talk about the other side of the coin.
Everyone has purpose, you know.
4:56 AM 11/8/2006
Good morning! Yesterday afternoon Sydney and Graham went to see Dr. Debbie. For Sydney this was her second round of vaccinations. For Graham it was a visit to get his ear infection diagnosed. It is a handy feature to have self diagnosing kiddos. Once again Dr. Debbie pointed out that ear infections were not contagious and there was no reason for any of the other kiddos to come down with an infection. The irony is that although we all know that ear infections aren't contagious our kiddos seem to get them in unison anyway - ear infections altogether now. Lynley and I must just have an ear design flaw in our genes. It would not be the first.
I have spent the last couple of days talking about the different treatment options that lay before Sydney. Somehow this turned into the great Sloan debate but I still think it is important to see both sides. Yesterday I did my best to explain the Sloan perspective from some one who experienced it. Today I will address some of the arguments that I regularly hear from the other side. I am still amazed that the subject attracts such heated debate but I can understand the perspective from this side as well. Everyone wants to believe that the hospital that they come from is the best. It is a natural feeling. I certainly would not want my child not being treated at the very best hospital in the entire world. Of course, that is why I chose to live in Fort Worth and have Sydney diagnosed at Cook's. No? Well, I have to believe that I am giving her the very best care in the world. That is my job as a daddy. This is life and death. I have to give her the best opportunity. That decision rests on my shoulders. So, by default, I have to believe that I am doing the best that can be done for my daughter. Would I be able to live with my decision if I did not believe that? Of course not and in this sense we all have to believe we are doing the best for our children. We are not all being treated at the same hospital and we are not doing the same therapies yet we all believe we are doing the best for our child, who is right? It is my contention that this is one of the sources of much of the animosity towards Sloan, at least from my perspective. The bulk of email that I get that complains about Sloan or 3F8 or just about anything related to Manhattan or the state of New York always seems to come down to this. How dare you say Sloan Kettering is the best hospital for neuroblastoma out there? I am always careful to point out that I don't say that. I do however believe they have more tools than most, if not all, other institutions, they have seen more cases of neuroblastoma than anyone else, and the availability of an antibody for the treatment of neuroblastoma I think is key.
One of the other arguments that I hear regularly is that it is unproven. It doesn't really matter what you are talking about they just say it is unproven. Well I think the key to this argument is to dissect it. Exactly what is unproven - survival? I have spent hundreds of thousands of words discussing this single topic. I can prove that more kids survive because of an antibody. I can prove that they don't. And then I can prove anywhere in between. With all of the research conspiracy theories out there I can throw just about any proven fact into doubt regarding these statistics. The fact remains however that antibodies kill neuroblastoma in kids. Period. That is indisputable. Do not be confused by the arguments. It is simple. It is just another drug that works to kill neuroblastoma, just like chemo and just like radiation.
The other arguments against Sloan and many of their therapies deal with selection. This is the argument that I get from most of the medical community. Many that have studied antibodies or understand them can no longer refute that they are doing something. They then turn to the argument that Sloan is somehow naturally selecting success. I have heard this argument in regards to the antibody and I have heard a different version in relation to their CNS (Central Nervous System) relapse protocol. When talking about the antibody I have heard many mention that the reason their statistics are so good is that they only put kids into trial in which they know the antibody will work. They usually say "That is bad science." Maybe it is and maybe it isn't but don't we want to treat our kids with drugs that will work for them? If antibodies only work for certain kids wouldn't we only want to treat those kids with them? I really don't know whether this does or does not happen but I personally consider it highly unlikely. Anyway, it is an interesting argument to explain the theorized increased survival but it would certainly not keep me from seeing if my child was a candidate for therapy.
The CNS argument is a little different. The argument here is that the CNS relapse survival curve is so short that if you can actually get your child to New York then that is quite a feat in and of itself. The belief is that if you can survive getting to New York than you have already selected out those most likely to survive because the average survival of a brain relapse is about two weeks. In other words, if you survived that long you are probably more likely to survive long term and in this way they have naturally selected out the survivors for their trial. I really don't know enough of the facts to dissect this argument to find out what is true and what is not but it is a very interesting argument and I have seen it from many fronts. I will pledge to research it more. I am curious about the validity of the "two week" life expectancy statement and I am interested in what the 3, 6, and 9 month and 1, 2 and 5 year survival statistic is without the Sloan regimen. Regardless, the argument isn't that the treatment doesn't work you just have to get there first.
Anyway, I have taken another day and bored the group of people that are interested in hearing another funny Dungan twerp story. I have done my damage. You can send in your arguments now.
Purpose sure is interesting I just wish it wasn't life and death.
5:33 AM 11/9/2005
Wow! I had to go back and read my diary entries again. I only got a couple of email and they were only simply downright helpful - no animosity, no arguments, no "Mark Dungan you are out of your mind." I am completely amazed. After years of watching this argument play out on the NBLAST list and in the email flitting from coast to coast I was sure I would spark some type of debate. I was so positive that my lashings were coming that I would even cover my eyes when opening my inbox. None the less, the thing that I generally like about heated discussions like this is that some good information generally comes out of them. Yesterday, I got a bit about that.
One of the successes from neuroblastoma that I have been most impressed with over the last year has been the CNS relapse protocol data that was published this year. I have written about it before in my diary. In my mind it was one of the most impressive findings to come out of the ANR meeting. I wanted to know why many others did not feel that way. Sure, they were doctors from NANT institutions and oncologists that weren't from Sloan but, none the less, I wanted to know why this piece of research that I felt was so important was not met with the same excitement by their colleagues. I honestly use this tactic allot. If I see a piece of research that I really like I then call their "competitors" (for lack of a better word) to get there feelings on it. Using this process I have discovered that just about every issue has two sides that have pretty good merit. Trust me, many of the NANT researchers don't like me because I take them to task on Sloan research and I do the same in opposite fashion to the Sloan team. Generally speaking I can always get down to the nuts and bolts of the argument as to the efficacy of a particular piece of research. There is not always a right or wrong answer but at least, at that point, I feel informed enough to make an opinion. These arguments go much deeper than many of us realize. Trust me, the debate about the efficacy of Sloan dropping transplant goes way beyond overall survival. There are several other concerns like its impact on secondary malignancies. The good news to report is that although these researchers don't agree they bring up some very important points.
In a way that is what I was hoping for in this discussion about Sloan versus the world. There isn't going to be an absolute answer but at least we can all make better decisions about our kids. That was one of the points that I took away from an email that I received from one of the families that has actually undergone the CNS relapse protocol. She wrote:
Let me chime in too -- Since she completed the MSKCC CNS relapse protocol, I want to add one thing.
Not only does the child need to make it to NY, but the parents must have the complete support from the sending hospital/doctors. They have to make sure the child has all the needed "stuff" (tumor samples, "right" amount of disease, etc.) her neurosurgeon did her biopsy with the knowledge that we were heading to NY so she "debulked" her as much as possible to make her eligible. Also, the sending hospital needs to do a lot of work in a very short period of time so that the child can get there as soon as possible. We had our first appointment with Dr. Kramer within a month of her relapse.
All in all, it doesn't really matter what you think of people's arguments. There is clearly all kinds of cooperation and commitment that is necessary to make this happen. There are requirements with every trial but if you can bring it together and you can make it happen then there is clearly some light at the end of the tunnel. That is the point. Here is a little girl who is not a statistic, not a debate, and not even an argument about a trials efficacy. She is a real beautiful little girl that is alive and well thanks to this protocol. In the world of CNS relapse I don't think anyone could offer more hope. So often we get all wrapped up in statistics and theories when what is important is right before us.
Well, once again, I appreciate the feedback and I got another opportunity to let my brain release. I guess this is a great way to expend all of my nervous energy from our impending scan week that starts on Monday.
Purpose and hope. It is what I live by.
4:41 AM 11/10/2006
Here it is, already Friday again. The weeks just seem to fly by. Sydney has enjoyed a week of itchilessness and has just about caught back up. It is a good thing because Monday marks the beginning of scan week which will mean three more days out of school. All of this time out of school has really driven home the point of how much older she is. When she is home she appears so much older. She needs her Daddy's snuggles less and less and she is content to sit at the kitchen table to do artwork or to sit in the playroom and listen to her iPod. She is getting more independent and I just don't know how much I like it. In some ways she is so much like a teenager. For her I know it is just growth. My little girl is growing up. But, for me, it is much more than that and it is a harder hurdle to overcome. Perhaps I was spoiled being the father of a girl who truly needed her Daddy but I am just not ready to give that all up. To me she will always be the sweet little angel that I slept in the crib with at the hospital. She will always be the one that torchered me with the 48 hours straight of Bambi. Those experiences somehow bonded me to my daughter in a way that cannot be explained.
I know that as our kids grow up they will become more independant. They will have their own friends and they will do their own things. I understand that kids grow up and they move farther apart. I am just simply not ready for that. As the years go by I know that letting go will be hard and I don't want to do it. When I had children I found myself for the first time. I understood what and who I was supposed to be. It became my identity and I have no use for it being something else. I am a daddy. It is what I do.
It is my purpose.
5:11 AM 11/13/2006
Well, after a great weekend, I am here sitting at the computer getting ready to put the war paint on. This morning Sydney will begin her next round of scans starting with a check of her bone marrow aspirates and biopsies. At this point I am really shocked that someone hasn't developed a dip stick of some sort.. Regardless, they will be drilling four holes into her hips which will mark the begin of the quarterly hunt for disease. I won't expect to hear anything today but maybe sometime tomorrow we will get word.
This round of scans is somewhat different than the last few. For once in a long while we don't have some sort of lingering ache or pain that could be attributed to disease. You might think that is a good thing (which it probably is in reality.) But, in our minds, it is just as scary as the previous scan weeks for no other reason than because it is different. I have said it before and I will say it again. Neuroblastoma has never really struck our family when we were expecting it. It was always been the unexpected. So, for us, the unexpected is just as scary as the expected.
Even I have grown tired of the worry and fear of scan week. It is annoying. I am tired of writing about it and tired of thinking about. Shouldn't we be used to it by now? Every 3 months it is the same old thing. Can't we just stop the complaining and get on with our lives? In short, the answer is a resounding "No!" It does not matter how much time goes by. When your child's life and future depends on what feels like a flip of the coin, it is as real and as fresh as the first time. I don't know that I will ever no longer fear this disease and, to be honest, I don't know that I want to. As long as I fear it I feel that we are somewhat protected. I know, I know. Asinine! It might be asinine but it is effective and it seems to work for me.
The process of the bone marrow aspiration is pretty simple for Sydney. We will arrive at the clinic at about 7:45 AM for some blood work and a checkup. After a couple of hours we will make our way over to the hospital where we will meet with anesthesia and have another mini checkup. When they are ready we will finally carry Sydney back to the OR where we will give her kisses goodbye and they will put her under with the mask. At this point we will leave but Sydney's fun will just begin. They will start with putting in a peripheral IV and then they will follow that with prepping her. They will do two holes on the front of her hips and then flip her over and do the same on the opposite side. After about 30 to 40 minutes they will come and update us and then it is usually only a short while before they call us back to recovery. We will go back to find an obstinate, little, drugged-out twerp that doesn't want to eat a popsicle or drink any juice. Within about 15 or 30 minutes she will return to herself and we will begin to pack up and make or way home - a little sorer, a little groggier, and a whole lot nervous-er.
And then we wait. We wait and wait. Will we have a future? Only time will tell.
Today I am full of prayers and purpose.
4:31 AM 11/14/2006
It turns out that yesterday was one of the best bone marrow aspiration and biopsy days that I think Sydney has ever had. I don't know the results but I can say that the actual procedure went about as smoothly as one could expect. We arrived at the clinic at about 7:45 AM. Cook's Oncology was experimenting with a new patient management system aimed at reducing infection. It was chaotic and crowded. I am sure that it was a nightmare for the staff and, judging by the discussions in the waiting room, not that much better for the patients. I am sure it will take some time to work the kinks out of the system. Right now, it might be improving infection control but it is putting a serious hurt on the patient experience. I understand what they are trying to accomplish. The problem I think is just that their physical space is simply too limited. Regardless, although it took a while to get back to the treatment area, once we were there it went incredibly smoothly. We even had the opportunity and pleasure to be seen by Dr. Eames. As always it was great to see her. She was as kind as ever and more than willing to allow me to bounce ideas off of her. I am sure it will go down in Sydney's chart as yet another "long discussion with Mr. Dungan."
After our little preparatory visit we made our way back over to the hospital for our procedure. With the timing of our visits we had just over an hour and a half to kill. We decided to make our way up to the third floor for a little play in the playroom and to visit with all of our friends in the unit. As it turns out, Sara Ferguson, the Duchess of York, was visiting the hospital and the oncology unit. Sydney was truly excited about the opportunity to see a real, live princess so we waited in the playroom for our chance to catch a glimpse as she came by. When she finally made it up to the third floor it was clear that we were running out of time. At first Sydney was really confused because she wasn't wearing a tiara. After all, everyone knows that "real" princesses wear tiaras. Time was running short and Sydney was supposed to be in the prep area for surgery. Figuring that she would be just a few minutes behind me a made my way down to outpatient surgery to get the process started sans Lynley and Sydney. Two of our favorite nurses were in charge of the "fast track" oncology patients so they were pretty understanding when I showed up alone. With all of the time that we wait I figured it would not be a big deal for them to wait a few minutes for Sydney. After all we were just going to answer a few questions before we would be waiting again. I must admit that I had a pretty good time telling them that they would have to wait a few minutes as my daughter was busy with the Duchess of York. In the end, it turned out that Sydney spent a good five minutes talking with the Duchess. Sydney was incredibly excited and even received one of her children's books to take home.
The rest of the morning went perfectly. We took Sydney back to the operating room where we left her talking to the nurses. Within about an hour we were back with her in the recovery room where she woke in a pretty decent mood. We were back home a little before 1:00 PM. Sydney had a large bowl of chicken noodle soup followed by some Doritos and then spent the remainder of the day playing. All in all, I could not of asked for anything more from a day filled with a trip to the operating room. Well, I take that back. I could ask for clean scans. I can assure you I am praying and hoping fervently.
It will be a nervous day of purposeful waiting.
5:09 AM 11/15/2006
Well, here we are waiting, waiting and waiting. We still don't know anything and today begins another set of scans. Sydney will have her CT scan today, the favorite of all of her scans. I must admit it is one of my favorite scans too. The CT scan is the best from several points of view. It is Sydney's favorite because it is the original first "sleepy tunnel." Yes, whenever we have talked about scans from the dawn of time, she has always loved the sleepy tunnel. It is covered in flowers, she used to get sleepy medicine, but she always gets Mommy and Daddy to act silly and tell her made up stories. It is fun for Lynley and I because we pick on each other. Usually I will tell a story about princesses or kitties on some sort of adventure but the story can always be applied to real life. Okay, I admit it. I use the stories to pick on my wife or my kiddos. For instance, my wife always leaves the porch light on during the day which is one of my pet peeves. So, I will make my story about a princess trying to escape an evil witch who leaves the porch light on. Hey, don't look at me that way, she does the same thing to me. The other thing that Lynley and I do is switch off during the story trying to make the next chapter more outlandish than the one before. By the end of the scan the story is complex simply trying to remember the characters names is a challenge. It is almost like a game of improvisational memory. None the less, the pressure is on because whether we remember the plot or not Sydney always does and is anxious to hear the next part of her story. It is actually quite fun and a great way to take the stress out of an already stressful week. Of course, all of this story telling is to comfort Sydney who is having to endure and stay still for the test but we all have a pretty good time. In fact, I can't remember the last time when all of us, technicians included, didn't leave the "sleepy tunnel" with out a good laugh, sometimes a nervous laugh, but always a laugh.
We may not be waiting quietly but we are waiting, hoping, and praying purposefully.
6:16 AM 11/16/2006
I still don't know anything about Sydney's marrow results. How frustrating! I was hoping that it would not come to this but it is time for drastic measures. I hereby officially change my precious third child's name from Ainsley Eames Dungan's to Ainsley "Bad Favorite Oncologist" Dungan. Furthermore, I reserve the right to call her by this name until such time that Dr. Eames calls me to give me Sydney's scan results. There you have it. I really had hoped that I would not have had to stoop to this level but I was left with no other alternative. My temperamental male psyche can only handle so much.
Other than this hiccup in our lives yesterday went smoothly. Actually it was jam packed with so much activity I can not even begin to get through it all now. Sydney's CT scan went smashingly well and my debut story, "The Witch and the Porch Light", left everyone in stitches. Yesterday was a simply incredible day but I dare not say anything about it until my life is whole again. Life feels too good right now and that scares me tremendously with these scan results. After all, our lives have only been turned upside down when the were right side up in the first place.
More nervous chatter.........
Still purposefully hoping and praying.
10:18 AM 11/16/2006
I am happy to announce that Ainsley's name has once again changed to Ainsley Eames "The best oncologist in the whole wide world" Dungan in honor of Dr. Eames who called this morning to let us know that Sydney's marrows were clear of disease. More test are pending but the world is a little brighter for me this morning.
5:03 AM 11/17/2006
It is so relieving to have such a nice and relaxing night of rest. We still have not heard back on the rest of the scan results but we are obviously quite pleased to hear about the marrows. Given Sydney's last hurdle in the road we always use that as our biggest yardstick. It has been ever 3 years since we have seen anything abnormal on the CT or MIBG scans so we always have a bit more confidence with those. Of course, in my totally non professional opinion I continue to see disease everywhere whenever I look at an MIBG scan so I simply chose not to look. The stress and worry from my incompetence is simply too overwhelming. It is far easier to stand away from the monitors and simply try and make the best of Sydney's time on the scanner.
All in all, Sydney's MIBG scan went well. We spent quite a lot of time back there but it was mostly due to our socializing. We have become so close to so many that have cared for Sydney that scan time almost seems like a reunion. It is time for us to all stand around and take a moment to see what we have all accomplished. There is a debt of gratitude that I will always have for those that have participated in Sydney's care that I will never be able to repay. It is important to me that they all know how much I value them. They have a choice to work with Pediatric Oncology patients and I am so thankful that they do. They have made a difference in our lives. Regardless of what our future holds they will always hold a special place in our hearts.
The night before last I had the opportunity to meet another neuroblastoma family at Cook's. I have crossed paths with them several times online but this was my first chance meeting with them in person. Their son is currently undergoing hu14.18 antibody therapy there. As a side note, I was extremely impressed at how well tolerated this agent appeared to be. Here it was the evening after his second day of infusions and he was happily playing computer games and seemed to be perfectly comfortable and alert. In fact, had I not known that he had just undergone antibody therapy, I would have called you a liar had you told me otherwise. Regardless, he seemed a highly intelligent young man and another example of the brilliance and charismatic charm that seems to plague the population of children with neuroblastoma. (So, I am biased!) I spent much of the evening talking to this father who also happens to be an orthopedic surgeon. It was incredibly interesting to hear his perspective and thoughts. I am lucky in that I have had the opportunity to meet and talk with so many families. It is always interesting to hear about their journeys, their interests, and their speculation but it was quite a treat to hear it from one of the medical community themselves. It adds an entirely new dimension to this world. Although he certainly has a better medical understanding to make decisions for his son than most, it ultimately comes down to the same thing. He is still a dad. A loving, caring dad fighting for his child's life.
There is so much purpose, I just wish there were more answers.
6:23 AM 11/20/2006
The news is finally in. Sydney's scans have all come back negative. We could not be happier. We had a completely relaxing weekend and it was entirely care free. On Friday we celebrated the news with our friends the Robertson's. Sydney was incredibly excited to see Truman. It had been about a month since the last time they had all been together yet it is clear that their love is still very much alive. They are all growing up and it was funny to watch them across the table as the each played their video games individually. The moment we left and came back to our house however the googly eyes came out in full force. They spent the rest of the night chasing each other around the house and playing in the playroom. Twerp love was alive and well in our house.
The rest of the weekend was relatively quite as we prepared for our upcoming trip to Huntsville, AL for Thanksgiving. The only distraction seems to be a tent that they have set up in the living room. In fact, they are in it right this very moment. The funny thing about tents and twerps is that they are apparently under the belief that they are sound proof. I guess that since they cant see me in there they must assume that I don't exist. They keep making these elaborate plans of what they are going to do to me with no obvious concept that I am right here on the couch. Either my children are a few tacos short of a combination plate or I have just discovered a secret weapon. The fact that they have no concept that I can hear them from outside of the tent can work to my favor and in the war of raising kids even the smallest of tactical advantages can be critical. I don't think I am going to let them in on the fact that I can hear them. Like her cleans scans I am going to milk this for as long as we can.
We are breathing again and our purpose feels right.
4:52 AM 11/21/2006
Sydney is out of school all week. That makes Martha's job around the house a little bit tougher. For some reason, when Sydney is home from school and Mommy and Daddy are not here she thinks that she can rule the roost. This is an interesting phenomenon and a clear sign that my five year old teenager is growing up. When people always say "5 going on 16" I never take it literally but I might have to rethink my position on that. Sydney is growing up so fast that it is scary.
The night before last she was looking at a picture of herself from two years ago. In it she was lying in my arms as we napped on the couch. It was just after her last two rounds of chemotherapy and she was bald. Sydney said "Hey, look at me, no hair. Why was I bald?" Lynley explained to her that she was sick and she had some medicine that made her hair go away. Now this was not the first time that we have had a discussion like this with Sydney. In fact, all through treatment we were pretty honest with her and we always let her know what was coming. We explained every procedure and, to the extent that we could, what everything would feel like. For instance, when it came to the 3F8 we would tell her that we would start by watching Sponge Bob. When the show begins the nurse would give her some medicine and by the time that Sponge Bob was over she would have bad tummy owies. We would then tell her that Cat would come in and save the day. She would give her more medicine that would make the tummy owies go away and then she would fall asleep.
The reason I tell you this story is to illustrate the point that Sydney was one well informed little patient. She knew everything that was coming her way. We were open and honest and we laid everything on the table. We thought it was important that we told her what to expect so she felt in control and so she knew that we were in charge. I believe that there is power in knowing that you control something whether you really do or not. That is hypothetical garbage but, the fact of the matter is that, I think it worked really well for Sydney. To this day I think she coped tremendously well. But, even this is not really the point. The point is that Sydney really has very little recollection that any of this happened. After all that chemotherapy, all of those surgeries, weeks of radiation and years of painful immunotherapy she really has no recollection other than some vague memory of and strange attraction to the people that cared for her. She doesn't wake up screaming. She doesn't cry herself to sleep every night screaming "Why me?" She doesn't really even remember. In fact, the thing only thing I think she knows for sure is that Mommy and Daddy love her and that she can get away with more around the house when we aren't here.
To many this may not mean a whole lot. But to someone just stepping into this world and worried about what their child's future may hold, I am happy to report that, even after all of this, it seems to be happiness. Well, happiness and twerpfulness - and argumentativeness, and snot-nose-kidness - but mostly happiness.
Purpose is still perspective.
5:07 AM 11/27/2006
It feels like I have been away from my diary for weeks. Last night we arrived back from our Thanksgiving trip to Alabama. As always the kids had a wonderful time. They absolutely love going to visit Mimi and Papa. For them everything is perfect there. Mommy and Daddy aren't all hustle and bustle. We don't have to work and we are far enough away from our routines that there aren't a million things flying through our heads. For 4 or 5 short days we completely relax. I noticed this type of effect on our kiddos whenever Sydney was in treatment. The more stressed out we were the more stressed out the kids were. There it was obvious that we had to keep our stress in check. When you are in the hospital fighting for the life of your child you are especially aware of how you cope with stress and you are acutely aware of its impact on your child. The days in the hospital are tough enough for your child and the last thing they need is a stressed out parent. As a parent we learn to put our stresses away and hide them so that we can put on our best front for our child.
In normal life, away from those hospital doors, we (or at least I) get wrapped up in life. Everything seems to operate in fast forward and I am always in a hurry to get to the next thing. There are the stresses of work, the house, and getting the kids to and from their schools and activities. Then, on top of that, there are the stresses of finding time to talk to other parents, researching neuroblastoma, and trying to figure out how we will find a cure. I am not complaining. That is one of the things that I do that I appreciate the most. But, it all makes for a very hectic schedule and one that always has Lynley and I running from one place to the other. With all of this happening, we are further stressed by the fact that we want to spend more time with the kids. All of this, and we are not even in treatment. What is the difference? I think it is because when life is not on the line we forget to keep our stress in check. After all, it is normal life. Isn't it?
Well, I still don't know how to simplify life but I am learning a lesson and that was seen on the faces and demeanor of my children. I think they were happy because Mommy and Daddy were relaxed. We weren't in fast forward. We weren't constantly herding them towards whatever was next. We just enjoyed ourselves and were thankful for where we had come from and where we were.
I need to learn to live this way. I need to appreciate what I have. I need to run my life with out it running me. Now, I have the best excuse in he world because I have seen it in my children's faces.
Purpose is a journey. It is important to take a break and smell the flowers every once in a while.
5:03 AM 11/28/2006
The trick after any vacation is sliding back into the routine of life. For some reason the Dungan family never eases into this transition. It is somewhat more like a high speed, head on collision. Yesterday was no different. We were already to begin an already jam packed week before our next trip to New York when it became more and more evident that Graham was coming down with something. He had great energy levels but he sounded somewhat like Froggy from the Little Rascals. We elected to take him to school but we decided to go ahead and make a doctor's appointment for him just in case. Sydney was raring to go to school. Her teacher had completed the transformation from Miss McPheeter to Mrs. Underwood and this would be the first time she would get to see her in weeks. Ainsley, as usual, was just glad to be home and was happily surprised to have the house alone to herself and Martha. There is nothing like the one on one attention that she truly believes that she deserves. She is lucky she is so darn cute.
Later in the morning I picked up Graham from school and took him to visit Dr. Debbie. As it turns out Froggy has a case of Croup. It is a viral infection of the vocal chords, larynx, and windpipe and it is incredibly contagious. Fortunately, it is only contagious until about the third day of the illness. So Graham should be out of the woods. Unfortunately, I am pretty sure that the little man has already exposed Sydney and Ainsley so it will be interesting to see if we can get them through the incubation period and infection before we head to New York. On the way home we picked up some steroids for him and then he became a Lunch for Life bag stuffer.(Sorry, there are no child labor laws enforceable within the Dungan household).
Sydney ended up having a great day at school. She was so incredibly happy to have her teacher back. After school she too was booted to the lunch bag labor lines. After a good dinner and some fun we all headed off to bed. All of us, except for Sydney I am guessing, because I woke up to a noise at 2:30 this morning. I went into her room to find her wide awake and playing with her kitten, the bane to my existence. She feigned sleep when she heard me coming down the hall but I am much smarter than that. She is my first child but, contrary to the 'under 6' popular opinion, I haven't become that much more of an idiot. I asked her if she had been up the entire time. She did not answer me which was a clear indication that she had. I took the kitten and suggested that she go to sleep. None the less, this morning ought to be very, very interesting. I am still debating whether I should still make her go to school. It would be a great lesson for her to learn but I am not real excited about wearing her system down in light of the Croup and her upcoming treatment cycle. This is such a ludicrous problem to have it just makes me laugh. My five year old sneakily stayed up to 2:30 AM to play with her kitten. What do you do with that?
As for me I spent my entire day stuffing "Lunch for Life" lunch bags. There are about 100,000 of them to get out of the door (literally) and as soon as we get one batch completed it is out the door and into the UPS truck. It is easy work but I must admit that it is somewhat boring. 3000 down, 97000 to go. Guess what I will be doing today? The good news is that I will get a small break to run to the University of Arlington to hear a presentation on neuroblastoma. One of the students there has chosen to do a research project on the effective treatments of neuroblastoma and has invited us to come. I never turn down an opportunity to cheer on someone that is willing to help educate the world about neuroblastoma.
This is what purpose looks like in fast forward.
5:42 AM 11/29/2006
Well, yesterday turned out to be a lot less hectic than I was anticipating. Sydney woke up at about 6:45 with a big smile on her face. I am guessing that she must not have stayed up the entire night playing with Boo, her kitten. To listen to her tell the story, Boo woke her up in the middle of the night and she was just trying to cuddle him back to sleep. I guess this goes to prove that not everything that comes out of a five year old mouth is a lie. Quite frankly, as much as I love my daughter I was beginning to doubt that fact. Thankfully, she appears to be growing out of it but, boy, 2006 will go down in her chart as the year of lies. Today will mark her first shot of GMCSF for this therapy cycle as we prepare for our next trip to Sloan.
Graham appeared to improve greatly over night. Given that this was the fourth day of hoarseness it was clear he was past the bulk of the contagiousness so we sent him on his way to school. Ainsley was ecstatic as this was another day for Martha to focus entirely on her. I am telling you now. There is a diva in our midst.
After some more bag stuffing I made my way over to the University of Arlington to listen to Gera's presentation on neuroblastoma. She did a great job and presenting the information very clearly. It is such a broad and technical topic I was honestly surprised that she did such an amazing job at getting the point across so succinctly. I am always interested to see the faces of people that hear the word neuroblastoma for the first time. I know what our faces look like but when your are just a casual observer what keeps your attention and what makes a difference. I guess it interests me from an awareness and education standpoint. How to we communicate what neuroblastoma is, why it is so deadly, and why it needs funding so desperately in a short, intelligible manner? What is the elevator pitch for neuroblastoma research funding? What makes it matter? Given 30 minutes or an hour of time I can convince nearly anyone that neuroblastoma needs their support, however, the bulk of the world doesn't have that long to sit to talk about it. How do I get it across quickly and how do I stimulate their own questions to keep them interested? That is the question and that is my challenge.
Well, I had best be off. There is a mountain of email awaiting me and those darn lunch bags are still looming over my head.
It will be another full day of purpose.
4:26 AM 11/30/2006
Yesterday, Ainsley came down with a fever and, if I had to hazard a guess, this this would be our second child to come down with the Croup. In all actuality, I am somewhat glad. This way she will not be contagious when we all go to New York. So, although I am sad she is sick it is a good thing for our trip to New York, she is still operating with a smile on her face and still happily living in our parallel universe where she believes that she is an only child.
Sydney started her GM-CSF yesterday and almost like clockwork she had a reaction We had premedicated her with Vistaril but I am guessing that we did not give it quite enough time to ferment in her body. Within about 15 minutes of the injection she began to itch. The reaction was systemic as she began to madly itch all over her body. Within minutes her heart rate began to race and she became scared of the reaction. From what I can tell it gave her a bit of a panic attack as she could not control the feeling. It took 10 or 15 minutes to calm her back down and get the situation back under control. I would like for us to be able to take credit for the improvement with our superior cuddling powers but I think it was more likely the Vistaril setting in. I think today we will give it an additional 30 minutes to stew before we give her the GM-CSF.
A few minutes after we got Sydney to calm down and rest Graham began a coughing fit which ended in, my favorite, projectile vomiting. His illness, however, was a reaction to the prednisone and less an issue of true grossitude and sickness. Once we bathed him and got him back into some warm clothes he was ready and raring to go.
So there you have it - a few hours in the life of the Dungan clan. It wasn't pretty but in the grand scheme of things it wasn't all that bad.
Just another day of purpose.
5:41 AM 12/1/2006
It was a little over 3 years ago that I was so overwhelmed and so desperate that I made a plea for everyone's help to cure neuroblastoma. I asked my family, my friends, and others in our shoes to give up lunch for one day and to donate it to research. My goal was to raise enough money for the Children's Neuroblastoma Cancer Foundation that we could make a significant impact on the neuroblastoma research world. Since that time we have funded several grants through out the country and piloted new projects at both Sloan Kettering and the New Approaches to Neuroblastoma Treatment (NANT) Consortium . Lunch for Life has also grown from the combined works of some 30 families with children that have neuroblastoma to almost 300. We have appeared in newspapers and magazines and we have been heard on television and radio in nearly every major city in the United States. In this short time we have made incredible strides to educate and make people aware of neuroblastoma. We have not yet found the cure but we have funded important work. We are closer to the cure today because of our lunches.
Unfortunately, the need for our lunches is more important than ever. The fact of the matter is that more dollars continue to be cut from research programs across the country as the government continues to reduce medical research spending. Additionally, although we continue to see children in advertising for the American Cancer Society, less than 4% of those funds actually go towards pediatric cancer and sadly enough less than 10% of even that fraction will be put to use towards neuroblastoma. That is approximately 40 cents for every $100.00 raised. Even the large pediatric cancer organizations have difficulty getting research dollars into the hands of those that need it most. Even CureSearch, the foundation supporting the largest children’s oncology group in North America which supports the clinical and biological research at over 200 participating institutions and treats about 90% of pediatric patients spends less than 5% of every dollar raised on neuroblastoma. In short, it is us, the families and friends of children with neuroblastoma that have to make the difference. We must do better for our children and that is why Lunch for Life is here. The facts remain:
Cancer is the number one disease killer of children in the United States.
Neuroblastoma is the most common cancer found in infants, almost double that of leukemia, and the most common solid tumor cancer in children, second only to brain tumors.
Childhood cancer kills more children per year than cystic fibrosis, muscular dystrophy, asthma and AIDS combined.
There are 15 children diagnosed with cancer for every one child diagnosed with pediatric AIDS and yet the U.S. invests approximately $595,000 for research per victim of pediatric AIDS and only $20,000 for each victim of childhood cancer.
The point is that Lunch for Life is important to these children. It will make a difference and it will hasten a cure.
Every year I wait until the moment is right to ask my friends and family to help me put an end to neuroblastoma. I try and focus all of my energy to one brief period in which we can make the greatest impact. That time is now. I plead with you to give up at least one lunch and donate that money to neuroblastoma research. I ask you to do that right now. Please go to http://www.lunchforlife.org right now and donate one lunch or more. Then I ask you to take the next crucial step and help me shout it from the roof tops. Ask your friends to donate and ask them to ask their friends. For the next 2 weeks I ask you to ask everyone you know. It is only lunch and if we tell enough people we can make all of the difference in the world. Please help me spread the word. Help us save these kids lives. You have seen what we have endured and we are the lucky ones - help us keep another family from stepping into our footsteps.
For five of you I am going to ask for something very special. On Monday morning I will be creating the 5 star lunch club, a group dedicated to getting the word out and getting those lunches coming in. This group will help me try to raise over $1 million dollars in the next 10 days. Please be a part of the cure. It is only lunch but it will save lives. Please donate now.
http://www.lunchforlife.org
This is purpose in action!
3:23 AM 12/4/2006
Well, here we are. We have officially arrived in New York City for what could, perhaps, be our last round of antibody therapy. This morning, surrounded by the whole Dungan clan Sydney well undergo the first day of 3F8 for this cycle. Yes, you heard me correctly. This time she is surrounded by Graham, Ainsley, Lynley, DeeDee, and I. If you don't think our suite at the Ronald is not the most happening place then you simply don't know us very well. Either way we are happy to be together to support Sydney. Lynley and I made the decision to come as a family this time for a couple of reasons. First, we all like to be together. Second, it is Christmas time in New York and what could be a better time to be here - really? Finally, Lynley and I will be having a sit down with Dr. Kushner to discuss our future plans. We need to figure out the next step. It ought to make for a very interesting conversation.
Now, onto Lunch for Life and the "5 Star Lunch Club." I have been proud of the success of Lunch for Life. To this day I am somewhat amazed at how well we, the families of Lunch for Life, have done to raise money for research. When you think about it, it is really amazing. Three hundred of us have come together to say that enough is enough and more needs to be done. As I had mentioned last week, we have funded some really important research and even more sits on the horizon. We are hastening a cure. I am proud of that.
However, one of the things that has always bothered me was that Lunch for Life turned into an email and word-of-mouth campaign and I was never ever really able to turn it into the grass roots, tree of giving that I wanted to. For those that may not remember the original idea for Lunch for Life was to give lunch and then, on the next day, to tell five friends, and to ask them to do the same. This was supposed to happen everyday for ten days. Had I been able to implement this it should have turned out like so:
Day 1: 1 person * $5 = $5
Day 2: 5 people * $5 = $25
Day 3: 25 people * $5 = $125
Day 4: 125 people * $5 = $625
Day 5: 625 people * $5 = $3,125
Day 6: 3125 people * $5 = $15,625
Day 7: 15,625people * $5 = $78,125
Day 8: 78,125people * $5 = $390,625
Day 9: 390,625people * $5 = $1,953,125
Day 10: 1,953,125 people * $5 = $9,765,625
Now, if everyone that donated gave just five dollars and told just five friends to donate on the very next day and we kept this cycle going for just 10 days, we would raise well over $10 million dollars. In reality, this became difficult to do because the further you got away from the original donor the less connection people would have with our mission of saving lives and thus were less likely to do it. However, we never really gave it a shot and that is what I would like to do with our 5 Star Lunch Club. I am looking for five people that are willing to start this with me. I will keep track of the giving and the donors every day. I will provide a place on this website where we can see how this tree of giving grows every day. We will be able to see who gave and who told who. In this sense we will also be able to see who did not tell their friends and who did not keep their branch of giving going. But, we will also be able to egg everyone on to make sure that they are telling their friends and that they are giving their lunches. Now sure, this is work. It is ten days of making sure your friends, and their friends, and their friends keep this going but, if we do, we could put an end to neuroblastoma. We could put research years ahead of where it is now. Speeding up research like this will save lives - thousands of them. Please be one of my five friends and lets make this happen.
Today, I am going to start off this tree. I will donate my lunch. I will receive a Giving Tree code and tomorrow morning I will post it on this website. My five friends will take this code and donate. They will receive their own giving tree code and, on the following day, give it to their five friends and ask them to donate with their giving tree code. Those five friends will donate and ask their five friends to donate using their giving tree code and so on, and so on, and so on, for 10 days.
Now, if you are one of my five friends, there are rules:
You have to donate at least $10 dollars. ($25 if you've got it! This is a 5 star lunch after all!)
You have to donate online.
You have to convince 5 of your best friends to donate at least $10 online on the very next day and convince them to get 5 of their best friends to do the very same thing on the very next day.
You have to be committed every day. You have to make sure your friends are doing their jobs and their friends are doing their jobs as well. You are responsible for the growth of your branch of the tree and for it to grow properly you must make sure everyone is doing their job.
I never said that his was going to be easy. In fact, it will be hard. No one likes to ask for donations. But, I guarantee you, none of this is nearly as hard as what Sydney or any of these kids have been through. I can guarantee that you would probably prefer to be in your shoes doing this than in Sydney's shoes this week. For 10 days, I am asking for your help. In just 10 days, we could totally change the world. In 10 days, we could literally cure neuroblastoma. I am asking (begging for those of you who are not offended by my desperation) to please help me. At the very least I can guarantee you a very fun ride. We will prove once and for all if this truly will work. If you want to be one of my five friends please drop me an email at mdungan@lunchforlife.org with the title "5 Star Lunch Club" and then be sure to come back to this site tomorrow to get my giving tree code.
This is what purpose looks like. It is hard work but the pay off is indescribable.
3:14 AM 12/5/2006
The first day of antibodies is officially down. As expected, Monday around the Day Hospital was hectic. We arrived at about 8:30 and Sydney and I left at almost 6:00 PM. We were definitely off to a great start. Sydney and Graham had a blast playing together as we waited to get everything up and running. We left Ainsley at the Ronald as she had developed a cough overnight and we wanted to make sure that we did not give that to anyone. The morning check up went smoothly. There were no surprises here. Unfortunately, we did not even really get started until about noon. Sydney tolerated the 3F8 fairly well. She had 1 full premed of Dilaudad and 2 half rescue doses. She had some lingering pain but spent the entire afternoon trying to sleep it off. She never really fully recovered and although we went out for dinner last night she slept her way through it in the stroller. We were hoping the fresh air and change of scenery would do her better but it clearly did not make a difference to her. She was content to snooze the evening away as well. I am hoping today goes as smoothly but with a few more awake hours.
In the meantime, the "5 Star Lunch Club" has officially been formed. If you are unfamiliar with what it is, please read yesterday's post. Otherwise, get ready, get set, go! If you would like to be one of my five friends and become a member of the "5 Star Lunch Club" you need to do the following:
Go to http://www.lunchforlife.org/donate.aspx
Donate at least $10.00 (preferably $25.00, this is a 5 star lunch after all!) in the honor of whatever child you choose and use the Giving Tree Code 20922.
On step 5 of the donation process you will receive a receipt and your very own Giving Tree Code. Write down this number!
Using your new Giving Tree code you need to contact 5 of your very best friends and ask them to donate on Wednesday (tomorrow) using your new Giving Tree code.
On Wednesday your five friends will need to ask 5 of their very best friends to donate on Thursday and to get 5 of their very best friends to do the same on the very next day, and so on, and so on for a total of 10 days.
So, to make a long story short, today is about donating your lunch using the Giving Tree Code I provided you (20922). Tomorrow is about convincing 5 of your very best friends to donate using your Giving Tree Code and coercing them (using mild force when necessary) to continue the tradition of asking 5 of their very best friends to do the same.
Please consider being one of my 5 friends and, if I have more, all the better. It will not be easy but I know this can be done. We can beat neuroblastoma. We just have to choose to do so. It is only lunch and it is only 10 days. We can do it!!
Do you want to see how we are doing. Simply go to http://www.lunchforlife.org/5starlunch.aspx to follow our progress. After you donate you should be listed under my name. Tomorrow your friends will be listed under you. You will be able to follow your progress and to make sure that your branch of the tree is growing as it should. My name is up. There are only 9 days left. Please help me fund the cure!
Today I am filled with hope and purpose.
4:36 AM 12/6/2006
Before treatment yesterday Sydney had a reaction to the GM-CSF which left her starting the morning screaming in pain. I have not completely figured out what is going on but it is clearly an allergic reaction that effects her heart rate, blood pressure, and throat. About fifteen minutes after the GM-CSF injection she goes into this state where she is almost completely inconsolable. She can feel the reaction coming on and then after about a minute she is completely inconsolable and writhing. Apparently the fear is that her windpipe is closing so we need to watch this more closely. We have traditionally used Vistaril as a premed to combat this reaction. Today we will up the dose and see if we can avoid the reaction.
Sometimes a failing IV can be a good thing. Yesterday Sydney's IV spent its entire day on the brink of failure. The catheter was placed in her vein pretty well but because of it's positioning it was causing a pressure problem for the pump. This left our nurse with a very sensitive pump which liked to stop every couple of minutes. This series of mishaps drew out Sydney's 3F8 infusion significantly. I don't know whether it was due to this or due to the fact that this was day two of this cycle but Sydney tolerated the treatment extremely well. In the end she only needed 1 half rescue dose of Dilaudad. This gave her the ability to recover more quickly. She did have a few flashes of residual pain but, all in all, treatment was an improvement from the day before.
Outside of therapy yesterday was an exciting day for a few reasons. First, I got to talk to Kushner about the possibility about continuing treatment. I learned a few things about neuroblastoma and antibodies that I did not know and it has left me in a quandary as to what to do next. I was so ready for this conversation. I had all of my facts ready and was prepared to argue for more antibodies. What I did not prepare for was for him to agree with my premise but to use the annoying power of logic and hidden unknown fact to sway my opinion. It is too much to go into now but I am now sitting on the fence. He has me believing that Sydney will probably never HAMA and that 3F8 has done all that it can for Sydney. Perhaps, I will be able to dissect all of these discussions later.
Another reason that it was an interesting day was that I met Sarel River, a jazz guitarist and composer that produced an album in memory of his son who succumbed to neuroblastoma in 2004. We are in the process of setting up some benefit concerts throughout the country for the CNCF. Jazz has never really been my genre but I can tell you that Sydney loves it. I had the opportunity to sit down and talk with him and his agent and we discussed some of the possibilities. I just might have to start listening to jazz. It was an honor and privilege to meet with him.
On a final note I am extremely happy with how the 5 Star Lunch Club is going. Believe it or not, in the first two days I have learned a tremendous amount just from talking to my five friends. It has stimulated me to be more creative and I am hoping that this creativity will help to make it as successful as it can be. Today is the day that my five friends will get their five friends to donate. This is a critical juncture for our club. Like any game of telephone the message is diluted and changed with each new group of 5 Star Lunchers that join the club. This will be the first opportunity to see how people react when they have no direct connection to neuroblastoma. It will be a learning experience for me as I figure out new ways to keep our message from being diluted and work to ensure that what is important stays important. Remember, all we are talking about is lunch. We aren't asking for people to donate a car. We are asking for a Lunch and the opportunity to cure cancer. It is that simple. I know it isn't fun to ask others to donate lunch and even less fun to ask them to ask five of their best friends. But, let me ask, how much fun will it be when we reach our goal. How big a deal will it have been to ask for someone to give up lunch for one day when it really turns out to cure childhood cancer. For whatever reason you have chosen to help I appreciate it with all of my heart. It is for Sydney, and Sean, and all of the others. It will make the difference.
On days like this there is so much purpose I just can't help but smile. Purpose makes me feel like I can make a difference.
5:17 AM 12/7/2006
We have made it past the midpoint of what is likely our last round of antibody therapy. Sydney continues to do well during treatment but, once again, had a reaction to the GM-CSF early yesterday morning. Although we premedicated her with a full dose of Vistaril she still showed signs of distress. Thankfully we thought well enough ahead to give the shot at the hospital where they coud deliver IV meds as needed. This morning we will be doing it all at the hospital. We will be premedicating her via IV and watching her very closely. I am not anticipating any major problems today but I will be glad to be there at the hospital where we can react quickly.
Sydney only had 1 half dose of Dilaudad yesterday but we kept her pretty medicated with Vistaril and Benadryl. She slept the majority of the day away and we she never really recovered. I am thankful that this will only last a week because her diet has really been off and. with all of the sleep and lack of food, anorexia will start to set in. There is no doubt in my mind that she is losing weight. The other complication appears to be constipation. I have not yet decided whether it is related to the narcotics or whether it is due to her practically nonexistent diet but we are now in high alert mode. We have already started her on Senokot and I have a feeling we will be making our way past Starbucks to get her some coffee. Believe it or not, it really seems to do the trick.
All in all, I would say that this week is better than our first shot at the double dose week. She is more lethargic but comfortable. She has had less residual pain and discomfort and seems content.
We are now on our 4th day of the 5 Star Lunch Club and the fourth level of giving. As you can see, some are doing really well. Unfortunately some, like me wife, are not doing as well. Today I will have to make sure she is adequately inspired. For Sydney and I it is exciting to see the tree grow. Simply go to http://www.lunchforlife.org/5starlunch.aspx to follow our progress. I am anxious to see if the cure truly is only 10 degrees of separation. Who can be the first to complete their branch of the tree. It may take more than 10 days to complete our tree but I am still going to do everything that I can to get it completed. Regardless of where you are on the tree, if you are a 5 Star lunch member and there are not at least five people under your name then today is your day to contact five people and ask them to join with your code and to inspire them to get their five best friends to do the same. We have already raised almost $1000.00 and our tree is still but a seedling If everyone does there job today that number should easily double.. It is critical that every one does their part to keep the tree growing under there name. It is only lunch and it will make all the difference in the world to these kids We are getting closer to the cure, let's see if we can fill up the tree today. Whose branch can become the longest? Get ready today! Fill up your fourth level in the tree because tomorrow there will be a prize for whoever is the first to fill up their fifth level in the tree. Make sure you tell your friends.
Thank you so much for helping. Sydney is watching. Let's see how big we can grow this tree today.
Purpose can grow too.
3:19 AM 12/8/2006
Well, here we sit on the brink of another huge milestone in Sydney's life. Today will be her last infusion of 3F8. In some ways I am glad. Yesterday was another strange day for Sydney. Despite all of our best efforts she, once again, reacted to the GM-CSF. The reaction was about as bad as the day before which was somewhat milder than what we have come to expect but I still hate to see Sydney have these reactions. It is like anything else in treatment. No matter how bad it is, if it is typical, expected, or average we always seem to find a way to deal with it. It is the unexpected or the different that seems to give rise to warranted fear. The great news is that Sydney will not have another shot of GM-CSF. Yesterday her ANC was well over 20, the threshold for deciding when enough "G" is enough. So, to make a long story short, today will hopefully be just another typical day of 3F8. We will go in for our requisite dose of mouse juice, have tummy owies, become enraged on Dilaudad, and then sleep it off for the very last time.
Yesterday was a fruitful day. I finally received a thorough explanation of the Sloan vaccine. I even had the time to research the technologies and agents involved. I am barely smart enough that I can understand it. Unfortunately, I am not quite smart enough that I can explain it to others. I am hoping another day of reading and letting it jell in my mind will give me the skills to break it down into simple enough terms that it makes sense when uttered from my mouth. If you ask me right now, although I understand it, there is no doubt that I could thoroughly confuse the both of us within seconds. Based on the look on the faces of the people that I have tried to explain it to there is definitely some work that needs to be done. Hopefully, another day of research and letting it jell in my mind will get me to the point that I can actually discuss it. The good news is that for those of you that believe the cure for cancer will come from a mixture of the skin secretions of some poisonous frog in the rain forest and a rare mushroom grown only at the top of some distant undocumented mountain then you will be happy with my report. It seems that the vaccine is actually based upon a very poorly designed mollusk and some bark of a Chilean tree that also has the pleasant side effect of doubling for soap and reducing phlegm.
I think the basis for understanding the vaccine and the reason that I have changed my feelings on continuing 3F8 treatment comes down to the same thing, the GD2 antigen. Officially, GD2 is a disialoganglioside expressed on tumors of neuroectodermal origin, including human neuroblastoma and melanoma, with highly restricted expression on normal tissues, principally to the cerebellum and peripheral nerves in humans. The relatively tumor specific expression of GD2 makes it a suitable target for immunotherapy with monoclonal antibodies or with artificial T cell receptors. In my mind GD2 is like the rough side of Velcro. It sticks great to the soft side of Velcro but is completely useless for sticking to anything else. So, in essence, when I think of neuroblastoma expressing GD2 I picture a neuroblastoma cell covered with the rough side of Velcro. In this same sense you might think of 3F8 (or ch14.18 or HU14.18 or other antibodies targeting GD2) as being covered by the soft side of Velcro. As the antibody floats through the body it lands on anything it can stick to (namely things with the rough side of Velcro) like antibodies and they deliver their payload. Does that make sense? That is my highly sophisticated description of GD2. There is more to it but those are the basics that I am able to comprehend.
So, we have basically spent the last two years filling Sydney full of short bursts of the soft side of Velcro hoping that the antibodies would eventually run into a neuroblastoma cell and kill it. This is what we know that antibodies are good at and they are working at that molecular level. They are good at seeking out and finding these hidden neuroblastoma cells that are lurking within these kiddo's bodies. We know they are there. There are just so few and far between that we don't have a test sensitive enough to find them. We are hoping that the antibodies will do the work for us and to get rid of these cells once and for all. The problem seems to be that not all neuroblastoma cells seem to express GD2 really well. These cells can be thought of as Velcro that has been really warn down, that has lost some of its stickiness. Sometimes they stick and sometimes they don't. This is why I believe that more antibody means more opportunity to stick to these slippery cells and deal with them.
All of this is further complicated by the fact that neuroblastoma cells can actually change over time and actually hide the fact that they have GD2. In this sense a cell that an antibody could have stuck to last week can actually avoid the antibody this week. They have proven in a lab that neuroblastoma cells have the ability to make these changes fairly regularly. So, how do we catch these little buggers. How do we get our timing just right. The answer to this question is the HAMA and the bodies resultant production of AB3, sheer brute force and repeated attempts as in Sydney's case, and the hope of this new vaccine. All have opportunity, but none is known to be the silver bullet. Next week we will be at home and I can hopefully delve into this further.
Interesting, interesting stuff.
For now I have a purpose and she is getting ready for her final day of therapy. It is both a happy moment in our lives and one filled with caution and uneasiness. I know it is highly unlikely but a prayer for a HAMA on our very last day would really fit the bill.
5:25 AM 12/11/2006
Home, sweet home for the last time. Yes, it is officially official. We have left the hollowed halls of Memorial Sloan Kettering after our final round of 3F8. I am happy to pass such a great milestone but I am still a bit uneasy. We are back to treading some relatively shaky ground. Given Sydney's last week of treatment I think we are making the right decision (not that we had one to make) to not pursue more 3F8 therapy. Friday was really no better. In fact, it was worse. Sure Sydney tolerated a new peripheral line (her third of the week) and the pain of treatment but it was her blood pressure that ultimately was our nemesis. We finally left the hospital at almost 6:00PM on Friday afternoon. Her blood pressure worsened gradually over the week. What we thought was a little high on Monday grew and grew to about 160 over 95 by Friday afternoon and that was at rest well after the infusion. I almost hate to see what it would have been any earlier. It took 3 or 4 hours to fall and even then it only fell to about 120 over 80 which was acceptable but well above Sydney's norm.
If you did not know, high blood pressure was one of the original DLTs (dose limiting toxicities) for 3F8 therapy. I don't think it is necessarily a cumulative effect but we certainly hit a point where it began to scare me a bit. I think it was the combination of the 12 rounds, the 2 years, and the increased dosages of the continuous barrage of mouse juice (3F8) that finally took its toll on her system. In this sense it makes it much easier to say enough is enough. It will have to wait until tomorrow for me to really delve into the other reasons why pursuing more 3F8 was probably not in Sydney's best interest but it was ultimately this battle over blood pressure that has given me some assurance that no more is truly okay.
The Dungan six (Dee included) then proceeded to have a celebratory weekend in New York. Sydney recovered by Saturday morning and we were off to Rockefeller Center and Times Square. The kids had a blast and we finally made our way back to the Ronald at a little after 1 PM. The girls then left for a trip to Canal Street while I put the kids to bed and caught up on some work. That night we would attend a Christmas party and the kids would get presents from Santa. The next morning we would go out for breakfast pack and then head to the airport for the never ending plane flight. The kids were great but the ending was spectacular. There is only one thing worse than sitting for hours on a plane with mechanical problems and delays and that is when you are sitting on a plane with mechanical problems and delays near a family of six with 3 children under 6 years of age. You always expect the worst and it kind of leaves you on edge. You try and be nice but everyone knows we are all trying to do our best to make the best of a bad situation. Luckily with my well traveled twerps they were treated to a pretty calm flight. Lynley was abused a bit by Ainsley but, all in all, they were pretty good. By midflight, everyone began to relax. Until...
In the moments of pure silence that draped the plane following the pilots announcement that we were on our final approach and that we needed to stay seated Graham decided it was the opportune time to shout (literally) "I need to go PooPoo!!" He used a strong voice with a bit of a grunt to it. I am pretty sure that this was akin to yelling "bomb" while going through the security line or "fire" in the middle of a crowded movie theater. There was panic in the faces of nearly everyone in the front section of the plane. Choking back laughter with fear, in one fell swoop, I unclasped his belt and ripped him from his seat. I placed him across DeeDee's and my lap and shouted for a pull-up diaper "Stat!" I unbuckled his pants as DeeDee untied his shoes and then, in one fluid motion, we had him naked from the waste down and then diapered and redressed. I then flung the boy back across the isle and buckled him back into his chair. I loudly denied that he was my child or that I knew any of these people which was met by appreciation and nervous laughter. Minutes later we made landfall. Graham and I were amongst the first off the plane and we raced to a bathroom where the young man unleashed a bowl of disgustitude that would rival that of a 60 year old man (no offence). A diaper would have be blown to shreds. I was so proud of my boy for holding it. It was a success. Everyone survived. We were home. What a blow out (grown).
All six of my purpii are safe, and happy, and home.
4:49 AM 12/12/2006
Today it was back to the grindstone for the Dungan five. We each made our own transitions smoothly back into our normal lives. It was strange to tell everyone that we were back from our last trip at Sloan. Everyone seems to be so happy for us. They all want to congratulate us. They all want to say "What fabulous news?" For me, however, it is just a tremendously uneasy feeling. It is a milestone but not one that I have come to terms with. I know doing nothing is not the answer. Perhaps now would be a good time to go over my discussion with Kushner. As everyone in the world probably knows. I wanted more mouse juice (3F8). As I jokingly stated, "I came for a HAMA. I paid for a HAMA. Now, I want my HAMA!" Here is why it is important.
A few days ago I talked about neuroblastoma cells and a surface antigen called GD2. I compared it to the rough side of Velcro. I also explained that over time neuroblastoma cells had the ability and habit to go back and forth from expressing GD2. In other words sometimes neuroblastoma cells have Velcro on them and sometimes they don't.. They are constantly evolving and morphing back and forth from one form to the other. 3f8 attaches to neuroblastoma cells by attaching to GD2. So, if you are getting 3F8 while your neuroblastoma is expressing GD2 you are in luck. However if not, this is how it is believed that neuroblastoma cells get by. This is one of the beliefs on why relapses happen. These lone cells that hide from the 3F8 are, by sheer luck, never caught. They just sit and hide within the body waiting to divide and conquer another day.
This is the beauty of the HAMA. You see when you forma a HAMA (the Human Anti-Mouse Antibody) you also develop a third antibody called AB3. The HAMA kills the 3F8 and slowly over weeks or months it eventually goes away. AB3 however lives in the body for years and the cool thing about AB3 is that not only does it get rid of the HAMA but it also has the ability to attach to GD2 and kill neuroblastoma cells. In this sense, AB3 provides a type of immunity to neuroblastoma and it lasts long enough to catch those straggling cells that had previously hidden their Velcro (GD2). It is believed that this AB3 response helps greatly in preventing relapse because it kills these lone cells that are hiding and lurking in our kiddos bodies. You can see. This is why I want my darn HAMA. I want Sydney to have this long lasting protection, this last line of defense.
Kushner understood that this was the reason I wanted a HAMA but his point was that he considered two years of treatment just as good as a HAMA. In other words, in that span of time the neuroblastoma cells would have surely shown their GD2 again. We had 3F8 over a long enough period of time that we probably got all of the cells that we were going to get. In his words, we had probably gotten as much mileage as we were going to out of 3F8 and, if we had killed them by now, 3F8 wasn't going to do the trick. I asked him if he had any data supporting this conclusion. Quite frankly their aren't enough of us to pull any significant data from but he did point out that all of those that he could remember that never produced a HAMA after 12 rounds were fairing well. I can only think of about 5 people over the last 5 or 6 years that have never HAMAed. Thankfully all are survivors so far. In the end, all of these were great points but I still wanted my HAMA. It was only when Sydney started having blood pressure problems that I came to terms with the fact that maybe, just maybe, enough was enough.
I am not happy about not getting a HAMA but I am thankful that Sydney is okay. Her blood pressure problems are enough of a side effect that I can justifiably say that based on that and the minor complication that they won't give her any more 3F8 that it must be time to stop. I can deal with that. I just don't have to like it.
Thankfully, there is a way to achieve that long lasting immunity and that will be the subject of my purpose tomorrow.
5:16 AM 12/13/2006
Part of getting back to speed when you get home is catching up on all of the homework. Oddly enough, around the holidays there is a lot of extra work that they hand out to the parents. There are always presents and snacks to buy and ever since Sydney joined this new school I knew there would be some kind of thought provoking activity. They challenge us that way. They are always looking for new and creative ways to get us all involved. That is great unless you just got back home from treatment and you are scrambling just to get the bear necessities for Christmas. Regardless, our homework was a truly thought provoking and worthwhile question that has left me thinking. Part of the activity is to describe some of our many family Christmas traditions.
This got me thinking, "Exactly what are our Christmas traditions?" Surely by now, 5 years into Sydney's life, we had really developed some really good Christmas traditions that would begin to form her lifelong memories. If by nothing other than sheer habit, we must have formed some truly memorable traditions. As I though about it, I realized that we really haven't. For the last 4 years we have been battling cancer. In fact, most of our Christmas's have included a hospital visit or travel to New York for treatment. In 2003, we arrived home just 4 days before Christmas from her stint in the bone marrow unit for her stem cell transplant. In 2004, she had just relapsed and we were recovering from a hospital stay due to neutropenic fever and severe cellulitus. On the day after Christmas we would be flying out on our first trip to Sloan for our 3F8 therapy prescreening. 2005 and 2006 has had the holidays closely nestled in between treatment stints in New York. Although we have had a week or two before Christmas it has once again kept us from decorating thus far. This year will be another race to get the Christmas tree.
Don't get me wrong, we have had great Christmas'. After all, we have been together. But, for the last 4 years Christmas and the holiday season has been far more about getting the last "Charlie Brown" Christmas tree on the nearest lot and racing to get everything done in the limited amount of time we had in the first place. Even Christmas dinner has been less about a long tradition of family recipes and more about racing to the Honey Baked Ham Store for our quickie store bought ham. These certainly weren't the traditions that I wanted my children to have at Christmas. I want them to remember sitting on Santa's lap, the smell of fresh made caramel, and making that trip out to the Christmas tree farm to get just the right tree. I want them to have all of those wonderful memories that Lynley and I have had. I want them to have that mixture of tradition that makes ours, the Dungan Christmas, so special.
It was then that I realized that although we are always in a race to "complete" the perfect Christmas for our children there is one tradition that we had that was uniquely ours. There is one special tradition in our family that means more than anything else. Our family is together at Christmas. No matter where we are or what we are doing we all take a moment to be together. Whether we have just finished a stem cell transplant, whether we have to get blood on Christmas afternoon, or whether we had enough time to make it to Lowe's to get the perfect tree (or just the straggler we were left with); the one tradition that we are stooped in is that our family is whole. Our family has been together. That is our tradition. No matter where we are or what we are doing, at Christmas, we are, thankfully and appreciatively, together.
Christmas is about our purpii.
4:50 AM 12/14/2006
A few days ago I had mentioned that I would be talking about the upcoming vaccine at Sloan and I thankfully have opportunity today. This is another one of those items on my hit list of anti neuroblastoma therapies that I personally hold out high hopes for. In fact, I am hoping that this will be the thing that will prevent my very own Sydney from relapsing. In comparison to much of what is on the horizon for neuroblastoma, this vaccine has a pretty good track record and history. The fact of the matter is that we know the vaccine can create the antibody response in human beings that we are looking for, what we are hopeful for is that it mounts enough of an attack that it will prevent neuroblastoma, melanoma, and sarcoma. It is this track record of success in creating the antibody response that is also the reason that is not in our kids hands today. You see, there have been some human trials with this vaccine in the past and it has been successful. It is based on this success that the pharmaceutical companies that make the component parts are fighting with each other to see who is going to get the bigger piece of the profits. It is this fighting over future dollars that is the reason that your child and mine have not received the neuroblastoma vaccine. It isn't because they are having trouble with an IRB (institutional review board). It isn't because they are having trouble manufacturing it. It isn't because of a scientific hiccup. It isn't because the FDA doesn't think that the original concoction is not safe. It is because one of the pharmaceutical companies has realized the success this vaccine will have (not only in neuroblastoma) and it wants to make more money when it works. Ultimately, it is not the success in neuroblastoma that these pharmaceutical companies are interested in. It is in the melanomas and sarcomas where they will make there money. We are small fish and just lucky (and unlucky) that we share a common bond with these other cancers. This vaccine could potentially make billions from its use.
This vaccine all comes down to a common thread - GD2. In very generic terms they have been able to create a vaccine which creates a durable antibody response against GD2 (the rough side of Velcro). Five years ago they successfully gave this vaccine to adult patients. This vaccine successfully created the antibody response (the soft side of Velcro) in these patients. This was a huge accomplishment. Before this point in time nobody had been able to correctly accomplish this feat. They had success with other surface antigens such as GM2 but had always failed to create an antibody response to GD2. It wasn't until 2001 that they did it successfully. This is important to melanomas, sarcomas, and neuroblastomas because they all express GD2. GD2 is an especially appealing target. Overexpression of GD2, especially on neuroblastomas and sarcomas, is striking and the frequency of clinical responses after treatment of neuroblastoma patients with mAbs against GD2 is relatively high. In addition, preclinical models have demonstrated that vaccine-induced GD2 antibodies eliminate micrometastases, the presumed source of relapse.
Now, I can talk for days and days about this vaccine and I know I will. It is incredibly interesting and I think it brings some very important questions about Sydney into the forefront. I have some theories on her ability (or inability) to mount an immune response. Regardless, for those who I know are interested in reading ahead I will provide a cheat sheet. The following study was published in 2003 and will be very similar to the vaccine that will be used in neuroblastoma. In other words the will be using the badly designed mollusk blood (KLH) and the tree that reduces phlegm (QS-21) as in the trial cited below. In fact, the only addition should be a forth target vaccine which remains unnamed. In other words the vaccine will target GD2, GM2, GM3 and one other which I do not know. Regardless, for you "meddies" out there here is the info you need:
Consistent Antibody Response against Ganglioside GD2 Induced in Patients with Melanoma by a GD2 Lactone-Keyhole Limpet Hemocyanin Conjugate Vaccine plus Immunological Adjuvant QS-21.
Clinical Cancer Research, Vol. 9, 5214–5220, November 1, 2003
Yep, nerd purpose in overdrive!
6:13 AM 12/15/2006
Wow! This has been a busy morning of email. Regardless, my head is now focused and I can start talking about the vaccine. I think the key is really the study that is mentioned above so I think I will start there. Here is the abstract:
Consistent Antibody Response against Ganglioside GD2 Induced in Patients with Melanoma by a GD2 Lactone-Keyhole Limpet Hemocyanin Conjugate Vaccine plus Immunological Adjuvant QS-21
Govind Ragupathi,1 Philip O. Livingston, Chandra Hood, John Gathuru, Susan E. Krown, Paul B. Chapman, Jedd D. Wolchok, Linda J. Williams, Roberta C. Oldfield, and Wen-Jen Hwu
PURPOSE: Melanomas, sarcomas, and neuroblastomas abundantly express the ganglioside GD2 on the cell surface where it is susceptible to immune attack by antibodies. Overexpression of GD2 on these tumors is striking, as is the frequency of clinical responses after treatment of neuroblastoma with monoclonal antibodies against GD2. In addition, preclinical models have demonstrated the ability of a GD2-keyhole limpet hemocyanin (KLH) conjugate vaccine to induce antibodies that eliminate micrometastases. However, vaccination of patients with GD2-KLH has previously failed to induce a consistent relevant antibody response. We test here whether the use of GD2 lactone-KLH can overcome the low immunogenicity of GD2-KLH. EXPERIMENTAL DESIGN: Eighteen patients with melanoma were vaccinated s.c. in the adjuvant setting on weeks 0, 1, 2, 3, 10, and 24. Groups of 6 patients were entered at three dose levels (3, 10, or 30 micro g) of GD2 lactone (GD2L) in vaccines containing GD2L-KLH plus the immunological adjuvant QS-21. Blood was drawn at regular intervals to assess the antibody response. RESULTS: The vaccine was well tolerated. The majority of patients in all three dose levels produced anti-GD2 antibodies detectable by ELISA assay. Specificity for GD2 was also confirmed by immune thin-layer chromatography. Although there was no statistical difference in terms of titers between the three groups, patients at the 30- micro g dose level had higher titers and longer lasting antibody responses overall by ELISA (median IgM/IgG peak titer 1:640/1:80) and generated the strongest cell surface reactivity by fluorescence-activated cell sorting (median IgM peak percentage positive cells/mean fluorescence intensity for pre- and postvaccination sera is 10%/63 and 70%/135). Patients vaccinated with the 30- micro g GD2 dose also had the most potent complement dependent cytotoxicity using human complement, with 5 of 6 patients showing strong cell surface reactivity by fluorescence-activated cell sorting and >30% cytotoxicity by chromium release with a serum dilution of 1/100. CONCLUSIONS: GD2L-KLH conjugate vaccine plus adjuvant QS-21 induces antibodies against GD2 that bind to the cell surface and induce complement-dependent cytotoxicity in the majority of patients with melanoma.
There are a couple of important items to gleam from this abstract. First, I think it is pretty clear that it has been hard to create an antibody response to GD2. GD2 is not a particularly effective immunogen. In other words, it is not particularly good at getting the body to stimulate an antibody response against it. It has been through a series of studies using antigens such as GM2 and GD3 that they have learned that the could add some ingredients to make GD2 a better immunogen. That was the purpose of the study above. They combined three parts with the vaccine. They used lactone, keyhole limpit hemocyanin (KLH), and QS-21. With other antigens they have found that these conjugates and adjuvants increased the antibody response in humans to other surface antigens. I believe it is one of the pharmaceutical companies that is making one of these components that is the one that has become greedy at our children's expense. I could go into the theoretical reasons why all of these other components seem to make this vaccine work better but I honestly don't think I could do as good of a job as this study does. Rest assured that the really seem to help make the vaccine effective. They seem to not only stimulate an antibody response but the good news is that the antibodies that they do produce appear to produce complement-dependent cytotoxicity (CDC) which is the killer instinct and the indication that they are doing their jobs.
The interesting nugget that I will provide you is that KLH is actually made from a cell similar to hemoglobin that is found in a particular type of muscle, a keyhole limpit. From what I understand it is pretty inefficient at carrying oxygen when compared to hemoglobin and I have no idea what biomechanics make it of value to this vaccine concoction. I can also tell you that crabs love these muscles because the have a hole in the top of their shells (the keyhole) which makes them really easy to scoop out. I can't really tell you anymore about KLH that is all that exciting but I take great pride that we have a vaccine for neuroblastoma made from these goofy little muscles
The other component that I think is pretty interesting is QS-21. As one of the world’s most widely studied adjuvants, research has shown that when added to a vaccine, QS-21 has the potential ability to increase total vaccine-specific antibody response and T-cell response. In addition, QS-21 appears to increase potency of the vaccine with relatively small quantities of antigen and to exhibit synergy with other adjuvants. Because of the ability of QS-21 to improve the body’s immune response to very low doses of antigen, vaccine antigen may be ‘spared,’ which could significantly decrease the amount of antigen required for a given dose and make vaccine production more economical. I am also happy to announce that QS-21 comes from the Chilean soap bark tree. I honestly don't know why that brings me so much joy. I guess it is the fact that I am just glad that the answer to neuroblastoma isn't sitting in my back yard. At least it comes from some spooky rain forest some where.
There you have it. The Sloan vaccine primer. So far everything I have told you is pretty much regurgitated fact. Soon I will be going into the theoretical stuff which is much more my opinion and much less fact and much more theory than actual hard evidence.
The weekend is near and it is time to appreciate my purpii, my loving gaggle of rugrats, and prepare for Christmas.
5:11 AM 12/18/2006
I really love this time of year. Sure, you may think it is because of all the Christmas decorations or the parties. Gauging by my ever expanding waistline you might even wonder if it is all of the great food. Some may have even pondered whether it was because of all the extra time I get to spend with my in-laws. How ever good all of those things may or may not be, the really awesome thing about Christmas is that little kids around the world have to be good -- especially mine. That is the true definition of "happy holidays." At this time of year my kiddos are so concerned about being spied by that peeping tom, Santa Claus, that they don't even have time to plan to be bad. It is awesome. I especially like it because I can take them out in public and everyone is clearly impressed with my parental mastery. At home I can even turn the TV from cartoons to sports without even the smallest of peeps. I love Christmas. We should have it everyday of the year.
In all do honesty everything around the Dungan household is going pretty smoothly. We finally decorated the tree, the stockings are hung from the mantel, the house has been appropriately covered in seasonal knickknacks and green stuff. One of the new treats for this holiday season is the clapper that we plugged the tree into for power. At $19.99 it was a bit expensive. However, it has brought me more joy watching the kiddos turn in on and off every 15 seconds than anything I can remember buying in the past.. There is nothing quite like the pride in a 2 year old's eyes as he discovers that he can turn the tree on and off by merely clapping his hands. In the same sense there is nothing like the joy in a one year old's eyes as she claps constantly essentially foiling her brother and sisters attempts at turning on and off the tree. Unfortunately, it does not keep her attention long and she is off to stealing Christmas ornaments off of the lower branches of the tree and hiding them throughout the house. Sydney too, enjoys the Clapper as well, but five year olds have graduated to a whole new level of enjoyment. She delights herself by identifying all of the different sounds that can actually operate the clapper. At times it sounds like a zoo listening to all of her experimental sounds. I guess the coolest part is that I get to live vicariously through each and everyone of them. I am getting to watch them as they do all of the stuff that I secretly want to do myself and this way I get to do them without those disapproving looks from my blushing bride. Yep, kids and Christmas. It doesn't get more awesome than this.
There is a whole new level of purpose when watching the world through their eyes.
5:05 AM 12/19/2006
Good morning! We have just about put the finishing touches on our pre-Christmas frenzy. There are still a few critical Christmas items to get in place - like a present for my wife (don't tell her) - but it seems we may actually be able to deliver Christmas on time. The kids are still delighting in the fact that the magic Clapper can turn on and off the tree. Had I known it would have created such a ruckus I would have wrapped it up for the kids. In all due honesty, I think Sydney will probably enjoy it a bit more than her Christmas present from Santa. She has asked for Fur Real Friend's Butterscotch, the 36" tall animatronic interactive plush pony. It makes real sounds and eats plastic carrots. The problem is that the pony, the bane to my existence, is roughly $300.00 and not available anywhere. In fact, I am pretty sure that Santa had to find him a couple of weeks ago on EBay and pay a premium to get the neighing nincompoop. Thankfully, I am sure he got it for her even though he thinks it is absolutely ridiculous and that she will probably spend more time playing with the box that Butterscotch came in than the toy itself. I have two problems. I have a five year old that does not understand the value of a dollar and a Hasbro marketing engine that has decided to market extremely expensive toys to five year olds and appreciates the value of the dollars in my pocket a bit too much. Thankfully it is Santa's problem and I don' have to figure it out - or do I. He is real isn't he? I hope so for goodness sake. He has the purchasing leverage to get these things at cost. Regardless, I guess it is a step better than the good old days when you had to ask for a real pony. Anyway, if there is anyone looking for an animatronic pony a few days after Christmas I have a pretty good idea where you can find one - box NOT included.
Like Santa, purpose is real if you believe.
5:20 AM 12/20/2006
Can you believe that Lunch for Life will crest the $200,000.00 mark today? It floors me that, for the most part, this is just people's lunches. The bulk of these dollars come from friends and family of our kids that gave up lunch to support our cause. That money alone can go to fund 8 new junior investigator projects for one year or to test 65,000 drugs over one year - from our lunches, our lunches. Isn't that astounding? I am always amazed at how quickly it grows. It seems like just yesterday I had set all of the trees to zero and, now, here they are all growing like crazy again. With this kind of growth I am even more confident that we will be able to go over the $1 million dollar mark over the next year. This figure includes many of our lunches but very little of the school campaigns and corporate giving. The bulk of those donations should be trickling in over the next 3 or 4 months. I am in full swing with my favorite part of Lunch for Life, getting ready to send out all of the presents to the kids that have presents under their trees and making the selection for the dream vacation to Disneyland. I will be making the drawing on Christmas morning so make sure you get your donations in if you want them to count.
The kids are doing great. Both Sydney and Graham are in the midst of school holiday madness. The big brew-ha-ha yesterday was over the fact that Graham got reindeer kisses while he was sleeping and Sydney did not. She felt that was totally unfair and had a conniption fit. It is amazing to watch brother and sister fight over such insanely ludicrous things one minute and then give each other hugs and kisses before they leave each other at school. Graham was in a tizzy yesterday afternoon. While sleeping during naptime Rudolph the red-nosed reindeer came and gave them kisses on the top of his nose. You could tell because each of the kids in Graham's class had bright red noses where Rudolph kissed them. Sydney was completely jealous to see Graham with a Rudolph kiss and Graham was in hysterics because he was dirty. I suppose he felt used by Rudolph. Regardless, sorting out this ridiculous scenario was how I spent those warm minutes after reuniting with my children after a long day at school. Within a few minutes I had removed the reindeer kiss from my sons nose and silently slid out of the daycare with him as my daughter pouted and stamped her way to the door. I must admit. Although I hate to see my children fight over something so ridiculous I could not help myself from laughing at the ludicrousness of the situation.
Of all of the things my kids could be worrying about they chose to fight over reindeer kisses. I take that as a good sign. They have good reasons to have much darker demons. They could be worried about much more sinister things. I am so glad that we have reached the point that their biggest worry is over who got Rudolph kisses. That is a huge step. Once I stop laughing I will have to now teach them to not sweat the small stuff. Somehow I think that will be harder than even I can imagine. Oh well, I will just have to keep laughing.
Sometimes I am glad that my purpii cannot see the forest for the trees.
4:39 AM 12/21/2006
There has been one thing related to Sydney's treatment that has really left me in a quandary. Over the years I have seen a few patients with this same type of symptom but I have also seen many others with the opposite response. I do not necessarily think it dictates survivability. In fact I have no data supporting it as an indicator either way. Regardless, I have definitely seen a trend so it is worth mentioning. I don't know if a person is incapable of being non-immunogenic but I truly believe that there is something about Sydney that is. In other words, I think there is something abut Sydney that keeps her from having an immune response or that ensures that she has a weak one to certain agents. I don't think that she is immunocompromised when it comes to the normal cold or the bulk of your standard fair of childhood ailments. However, I do think that she has trouble mounting any type of passive immune response. Let me explain myself and where I am coming from.
My first piece of evidence goes back about two years ago. When we first signed up for the vaccine trial at Texas Children's we were required to supply them some blood. They then scoured this blood to take out all of the t-cells which were Epstein Barr avid. I don't recall off of the top of my head how they did this but it really is not the point. The point is that they really had a lot of difficulty finding these cells within Sydney. In fact we had to go back to the well several times to get more blood in order to come up with enough cells for the study. At the time I never really gave it much thought. I had assumed that what they were looking for was probably hindered my the huge doses of Cytoxin that she was in the midst of receiving. I filed the experience back in the back of my mind and never really thought about it again.
As Sydney continued on with 3F8 I never really started to think about her inability to mobilize these t-cells. Occasionally Heidi Russell would call and ask for more blood but I never really though about it having any impact in our lives. However, as Sydney neared the end of 3F8 treatment with out forming a HAMA which is another type of immune response it began to cross my mind again. Here was another type of immune response that was certainly expected over a period of time which never ever really raised its head or it did so in such a minor fashion it never really became a factor. This got me to thinking. Is there something about Sydney that I need to put my finger on.
All of this became more and more interesting as I began to study vaccines and became more aware of the purpose and mechanisms of their adjuvants and conjugates. I think we can agree that neuroblastoma arises as a cancer due to an individuals inability to deal with these mutant cells. For some reason their bodies don't kill off neuroblastoma cells like normal people's do. Perhaps the missing key is that whatever causes the normal body to kill off these neuroblastoma cells is what is missing in these kids. Their bodies have lost the ability to regulate the growth of these mutant cells. In this sense could we not make the argument that it is an immune response that could be weak or missing. Maybe neuroblastoma is less about cell production and aggressive growth and more about a bodies ability to regulate this growth. Maybe the problem is not that the kids have neuroblastoma but that they do not have the ability to get rid of it naturally.
Now, there is much more to my discussion, but as I said before this is not fact. It is all unknown. It is the wanderings through the mind of a simpleton. Don't write your oncologists yet. However, if your child has ever shown any similar evidence or if this makes sense to you for a similar or different reason I would be interested in hearing your thoughts.
Well enough rambling. It is time for Christmas. There should be much more Santa Claus and much less of my jaw flapping.
My purpose just never wants to sleep.
5:11 AM 12/22/2006
Yesterday marked another pretty significant milestone in Sydney's journey. In the morning we went to the clinic to draw blood for Sydney's very last HAMA test. This pretty much marked the end of our obligation to Sloan under the trial in which she had participated for the last two years. We will continue to scan her quarterly but this clearly marks the end of that chapter in our lives. After the blood letting (which did not go well - 3 pokes) we had the opportunity to meet with Dr. Eames. The obvious question, at least for me, was, well, "what next?" We got the answer that I expected - "Nothing!?!" It isn't so much that no one does not want to do anything. We all want to do something. We want to do something that will keep her from relapsing. The problem is still two-fold. First, there really is nothing that she would qualify for and, secondly, there is nothing really available that really meets any reasonable balance of risk and reward. She won't qualify for most studies because she does not have any measurable disease. That leaves us with a very small subset of vaccine trials. The vaccine trials are not necessarily interested in measurable disease because (a) the are expected to work best with out it and (b) they are measuring there successes by the level of antibody response. There are only two trials that I am even aware of at this point. The trial in which she is currently enrolled (and has been for 2 years) in Houston and the upcoming trial at Sloan that I have talked so much about as of late. That is it.
It saddens me that we once again sit on the brink of success. Sydney is once again perched atop this glorious peak and yet we know there is at least a 50% chance she will still succumb to the disease and there is nothing more that we can do. The truly frustrating part is not that there are not ideas floating around out there. It isn't that promising low risk agents aren't known. It is that no one is giving them to our kids. I just don't get it. Most are concerned about "doing no harm", but many our more concerned with competition between agents and dollars. Others are our advocates that are fighting so hard for our children's safety that they are forgetting that most will still die without intervention. We still have not won. The war is not over. In most of the kids that have reached this milestone there are still cells lurking and hiding in there. Those children will eventually lose there battle. Have I lost too much touch with reality? Have I been tainted by the cancer world? Have I become nuts? I don't want to sound like a political activist. I don't want to sound like some crazy Dad that has become obsessed with the disease (we already know that). But I want to draw a line in the sand. Give us a sugar pill, give us some Singulair, give us some anything that is low risk but has the possibility of the reward. There is a subset of patients out here that are ready and willing to do almost anything within reason that can offer some hope. There are a bunch of agents out there that we know have limited side effects. There are drugs that are already being delivered to children for other conditions. They are safe and they show potential in neuroblastoma. Lets get them into these kids. Let's study the effects. Let's answer some more questions and save some more lives. Let us do it now. There is no reason that we should not have 100 kids on Montelukast Sodium right now and I don't even know whether that is even on the very top of my list anymore. The point is that there are questions that need to be asked. Let's ask them!
Thank you for letting me have a hysterical rant. I needed that and it cleared my system. However, I did mean it and I am going to make it my goal. Over the next year I will figure out how to get some promising low risk agents into these oncologists hands. We will find a balance. We must find answers and we must find them faster.
It is my purpose.
5:08 AM 12/26/2006
It was the day after Christmas and all through the house, not a creature was stirring except for Boo, the bane of my existence, who woke me up at 3:00 AM. Never the less, this Christmas will have to rank right up there with the best Christmas' of all time. Sydney has completely succumbed to Santa's magic spell and Graham has finally arrived at the age of awareness. They have been enveloped by the very essence of Christmas joy. Now, I know that Christmas is about celebrating the birth and life of Christ and I appreciate that. However, I must say that all of that can be easily missed when viewed through the eyes of children at Christmas. Quite frankly, now that I have re-experienced Christmas through a my children's eyes I never want the feeling to go away. I have found myself believing and feeling the very essence of what I did as a child. I have gotten to witness all of my childhood feelings and emotion threefold and in the third person. That was my biggest gift from Santa this year. I got to feel the beautiful gift of believing in the magic all over again.
It turns out that Santa was lucky enough to get a hold of Butterscotch, the animatronic pony. He also made Graham's day by investing a small fortune in in the DC comics empire that is Superman. There is now nary a Superman branded object that is not now coveted by the young master. Ainsley too had the Christmas that dreams are made of. She not only delighted in the joys of her own toys but reveled in the fact that she was still at the age that she could get away with stealing her siblings toys without being beaten senseless. She took great joy in grabbing their favorite objects and running in the opposite direction. For her Christmas was all about achieving the Mecca of older sibling abuse and that she did. For me, well I was happy. Over the years the magic had worn off a bit. Ever since 1979 when I became aware Christmas has continued to lose a little more luster every year. The last three years, although special because Sydney was still in our loving arms, still lacked some of their brilliance because of our inability to enjoy the holiday care free.
This year, however, was so special. The magic all came rushing back. For moments during this holiday we all got to appreciate how lucky we were and we got to experience the magic all over again through Sydney, Graham, and Ainsley's eyes. I am a lucky, lucky man.
And, once again, I found my purpose giving me a gift.
5:38 AM 12/27/2006
Oh, I am so going to jail. There is no doubt that CPS has been contacted and they are on the way. It may look like it but, it simply wasn't my fault. It was them - those grandparents - the ones from Alabama. They made me do it.
It all started on Christmas Day. We were all happily opening our presents - when it happened. The kids selected a large heavy box to open. I don't remember exactly who it was to but I know for sure who it was from. The kids shredded through the wrapping. There was paper flying through the room. Marjorie and Kip had smiles on their faces. Within seconds my sweet, pure, and safe children had unmasked it - the Giga Ball. For those of you who may not know what it is, the Giga Ball is a 4 foot, space age, hamster ball for humans. Apparently, in Alabama, they put there kids into them and let them roll around the yard. Quite frankly, here in Texas, we shoot things that look like that. Regardless, it looked interesting enough. There were pictures of kids on the box and they seemed to have most of there appendages intact and none of them appeared to be bruised or bloodied. I hate to admit it but even we had friends that had such a contraption for their kids. It must be okay, mustn't it?
Well, anyway, it finally warmed up enough yesterday afternoon to play with the kids outside in the yard. My blushing bride and HER family decided it would be a good time to put MY kids into the giant gerbil ball What they did realize was that there was going to be blowing involved. What they did not realize was that they would have to fill up the 30 or so poofy hexagons that made up the 4 foot, blue, round, hollow globe individually. Somehow I was wrangled into taking over the blowing up process. Being diametrically opposed to the "kid blender" I am still at a quandary as to how they got me to do it. I am guessing that it must have been some secret southern Tom Sawyer voodoo. They all know how to use that syrupy sweet drawl to get you to do things that you would not normally do. Regardless, there I was with my electric inflator going to town on the giant ball of death and destruction. After about 30 minutes we had completed the process.
The grandparents selected Sydney to be the first one to be loaded in the Giga Ball. I guess that they figured that if she had made it through everything that she has in the past she must be the most likely to survive this. In she went and they began rolling my daughter around the yard in the giant ball. Over the next hour or so they put each of my children into the human gerbil ball and rolled them around my front yard.
I hid inside the house.
Thoughts kept going through my mind. I kept imagining myself taking them to the ER and hearing the doctor say "You did WHAT?!?!?" when I explained how they received their injuries. The faces of the people that drove by my house yesterday are still etched in my mind. I can hear the words - "What are those Dungan's up to now?", "Are they rolling their kids around their front yard in a giant gerbil ball?", and "I knew they were from Alabama! I hear the Mom and Dad are actually brother and sister."
Yes, it was awful. The good thing was that my children all survived, apparently no worse for the tumble around the yard in a giant inflatable ball. The kiddos even seemed to really enjoy it. We were lucky, but, I still know they are coming after me. There must be cameras. This must be for some TV show. Am I on "Stupid human tricks" or "When parents go bad"? I am CPS fodder.
Purpose take me away.
5:38 AM 12/28/2006
Good morning! I played a little hooky yesterday morning and ended up on the golf course. I guess I can actually qualify the experience as business because the golf was definitely not the highlight. We had a great time but the bulk of the conversation turned to a golf tournament that we are planning for later this year to benefit the Children's Neuroblastoma Cancer Foundation. My goal is to net the foundation near $100,000 dollars so that means that we will probably needs to raise nearly $150,000 to do it unless we can get the golf course donated. The CNCF has had great success with golf fundraisers in the past. Families across the country have consistently netted the foundation between $35,000 and $100,000 per tournament with hopes of raising even more. My aspirations are to start at the top.
We are bouncing around some pretty good ideas. We want to create a golf fundraising event but we want it to be something truly unique. We want it to be a destination event attracting people from all over. This means that our tournament must be located at an incredible facility and it must be out of the ordinary. Thankfully in Dallas/Fort Worth we have a plethora of truly great golf courses available to us. It will just be a matter of balancing the right course with the right cost. We are considering making the golf tournament free to compete. This is very different than many golf tournaments. There is a catch, however. We want to structure it like a fun run or a cycling event. Each team of 4 (there will be 25 of them) would be required to raise $5000.00 in sponsorships. These sponsorships would be similar to a fun run where participants are sponsored for every mile they walk or run but, in this case, you will sponsor their team for every net eagle, birdie, or par that their team makes.
Another idea is to use coins as the prizes and giveaways. We would have hundreds of gold, silver, and bronze coins minted. On one side the coin would include the title sponsors logo. On the other side of the coin would be the Golf for Life logo and tournament emblem. These coins would then become a major part of everything we do. Winners would receive gold coins, merchandise and trips and second place would receive silver coins and merchandise. Each hole on the golf course would also sponsor a single child with a game where the winning prize would be a gold coin. We would also raffle off a bag of gold coins and have a silent auction and other prizes to be won. Everyone would go home with a tournament coin and, hopefully, arms full of merchandise and auction items.
We will be meeting again on Friday to discuss budgeting and planning but I am extremely excited about the idea. I am hoping that it will be an incredibly fun and effective fundraiser. If anyone would like to be a part of planning for the event or donating your time please contact me. There is a ton to do. We are finding sponsorships, writing famous athletes and local celebrities for autographed memorabilia, scoping out locations, getting coins minted, having marketing materials designed and printed, and just about anything else you can think of. At the very least I can guarantee you some fun. Well I best be off.
As you can see my mind is flooded with purpose this morning and I haven't even had the opportunity to talk about my lovable twerps.
6:16 AM 12/29/2006
We scored ear infections - two of them to be exact. Yesterday Lynley took Sydney and Ainsley to see Dr. Debbie. Neither were pulling their ears and neither were in severe pain. In fact, I never even saw Ainsley tug at her ear. The only reason that they went to the doctor was because Sydney told us she had an ear infection. She told us so nonchalantly I thought there was no way she would really have an ear infection. Boy, was I wrong. Two raging ear infections to go please. My girls are pretty tough. If it were Graham or I we would have been whining like little babies. We would have been screaming for morphine. What can I say. We are a sensitive sort of manly dudes. The good news is that we now have antibiotics and the kiddos are now appropriately drugged. In a day or so I won't feel nearly as guilty for not believing that they actually had an ear infection.
Over the past five years we have gotten pretty good at ear infections. You may not realize this by watching my family but ear infections are not contagious. They can not be spread from child to child. Just so you know. As a side note, we all are expecting Graham to come down with an ear infection within the next week. In this case, I just think my kiddos have funky ears. Whenever they get the "snots" it is commonly followed by an ear infection. I think their Eustachian tubes just aren't very good at clearing the nose juice (mucus) out and it just sits there and festers until it clogs up and turns into an ear infection. Since the "snots" are generally contagious, my kids are lecherous twerps of germitude, and they all have the same ear design; I think this is the reason for our seemingly contagious ear infections. It is my theory anyway and focusing on the mechanics and cause certainly relieves the guilt of not listening to them the day before.
Purpose eases guilt, too.
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