Dad's Diary
(Transplant)
8:10 AM 12/1/2003
FEELINGS WOH, WOH, WOH I HAVEN'T GOT FEELINGS
I am completely feelingless. Don't get me wrong, I am still loving husband and SuperDad but I am utterly feelingless regarding Sydney's condition. I am guessing that because I feel this way this morning, tomorrow I will be the embodiment of a basket case. But, for right now, this second, I am empty. I have no fear. I have no excitement. I am utterly devoid of feeling. Once again I find myself asking if this is a protection mechanism or the strength that I had asked for from God. Regardless, my "what ifs" are not of Sydney's condition but rather how I am weathering the storm. I don't particularly care for my lack of emotion but I am guessing that it is better than the alternative. There certainly is a lot to be worried about if I could bring myself to it.
There are several issues that I could discuss, several conspiracy theories to address but, right now, I just don't feel the least bit of inclination to speak of them. Sydney continues to do fairly. There is a lot of nausea and complaints of "belly" pain but there are also sustained flashes of the Sydney we have grown to love and, well, -- endure. She is still bossy and at times playful but most of her time is spent sleeping or lying down. We are still forcing her to run the halls and get exercise and after a few minutes of complaint she is off and terrorizing the playroom. She is not eating or drinking which is not surprising as everything that goes down only stays for seconds. We are working on keeping her putting food and drink in her mouth even in miniscule amounts. It is more the habit than anything else. There are still some meds that she has to take orally and it will only help if we provide some form of tolerance. With the right combination of nausea medication, timing, and volume we have developed a pretty routine method which seems to work. Again, it is not enough to nourish her but it is enough to keep her in the habit and to keep her medicated. It is the balance that we do not want to loose.
Sydney's renal panel is off this morning. This is not a particularly good sign. They have redrawn her labs to check for accuracy. Hopefully, we will find that they were miscalculated and we can avoid sheer terror. Once again, I am feelingless. I have no doubts as to her success so, right now, it simply does not effect me. It is strange to live in a world without emotion. I am still debating whether it is good or bad. Strange, huh? Nevertheless, I am with purpose and without fear for I am SuperDad.
PATERNITY
6:20 AM 12/3/2003
I wish I had better news but then, I guess, this is what is expected. There are still flashes of Sydneyhood but for the most part she is resting and watching movies. Sydney is still incredibly nauseous. I imagine this will be a mantra that I will be chanting everyday. The sores on her chest appear to be worsening and a blood blister has developed on her tongue. The blip on her renal panel from yesterday seems to have corrected itself although I know this will be one of our biggest hurdles. I guess you could say that I have insider information. So, I am saying some extra special prayers. I was fairly clever as I had saved some prayers early on just in case I needed them later on. I am even practicing a renal cheer and am gathering all of my powers so that I can talk to Sydney's kidneys and liver much like I have done in the past with her blood. Yes, I know -- Nuts!!! but it worked in the past so I am certainly fully prepared to do it now (Plus, Squishy said it would be a good idea.)
This morning Sydney will be receiving platelets. Her "blood bondo" tank seems to be running on empty. We are hoping this will put an end to the bloody noses and coughing up of blood. She isn't coughing up a significant amount of blood although it was expected. To best explain it would be to compare it to the peach flavored jelly belly. (Not the taste, but the appearance.) Her mucus is yellowy orange with occasional red speckles. Her nose bleeds are just that and are dark red in color. (For those of us who need food comparisons this would be the cinnamon jelly belly)
Speaking of food, "Rice" is now a fat banana (not the jelly belly). Lynley and I went for a follow up ultrasound yesterday and I am happy to say that everything is going as expected. Rice appears to be the appropriate size and weight and his bodily functions and heartbeat appear to be normal. Additionally, it appears that he is also a fuzz sniffer. Although I am not aware of a maternal blanket that exists in the womb, he certainly appears to be rubbing fuzz on his forehead and nose. This is actually good news because I had some concern that this child was not mine but seeing him rub his nose and knowing that Sydney does this it must be hereditary. I also know that the mailman is not a fuzz sniffer. My paternity concerns lie in some very graphic pictures of Rice. He appears to be - ahh - well - well hung. The ultrasound pictures that we have from the womb seem to be right out of the pages of PlayGirl. It was shocking to say the least and brought great doubt to my mind that Rice was indeed of my seed. But knowing that he is a fuzz sniffer I am again without doubt and proud of my strapping young son, a child even Uncle Leroy would be proud of. Well, enough of that, it is once again time to dawn my cape for I have a purpose.
DAY 0
6:30 AM 12/3/2003
Today I just do not know what to say. Sydney's transplant will occur at about 1:30 PM and as soon as we have an all clear I will be sure to let everyone know. Once again, I feel prepared for the process. I know the issues. I know the concerns and all of the "what ifs" have been addressed. Perhaps, I will have more to say later.
7:43 AM 12/3/2003
I have spent several hours this morning talking to nurses. The talks were less about Sydney's condition and more about life, liberty, and the pursuit of happiness. Sydney has been fairly pukey this morning and it is obvious that she is continuing to deteriorate. I preface this with the fact that the deterioration is expected. I think this is partly the reason behind my state of comfortably numb. I have never been more prepared for anything in my life and there is fairly little that shocks me. Sydney's platelet transfusion yesterday went off with out a hitch and it has appeared to temporarily put a stop to the nose bleeds. Unfortunately, the blood has moved to her urine and we are starting to see trace amounts in her diapers. This could be the consequence of her low platelet count yesterday or it could be from the fact that her kidneys are working so incredibly hard. Both her elevated BUN and Creatinine levels are an indication of this. I would just assume that this would go away. It is not a good sign but it can also be a relatively benign side effect seen in many kids that have been exposed to this protocol. Sydney is still herself. She is still roaming the halls, laughing, arguing, cuddling, and doing all the things that are Sydney. She was slowed down but she is still the little snot that I have grown to love. She officially has level 2 mucositis but seems to be tolerating it fairly well so far. She was only in need of a single dose of pain medication yesterday. Sydney is still flushed and we are yet to find the cause. Basically, she appears to have a sunburn. Her tushy is beginning to deteriorate although she still has not developed an official diaper rash. SO there you have it the official state of Sydney.
Today will be very interesting and we are hoping that it is one of those things that is just full of hype. We are hoping for a very dull and boring stem cell transplant. The precious stem cells will arrive in five frozen baggies. They will be individually thawed in a cool bath. Upon turning back into liquid they will be reinfused back into her through her central line. It will be very similar to a blood transfusion with the exception that we will have a room full of people and medical equipment. The procedure will take place in our room. The entire procedure will take about an hour. If we see some type of allergic reaction we should see it within the first 15 minutes or so. Fluctuations in blood pressure and wheezing will be things that we are looking for. There will be a buffet of medications and medical apparati at the ready to deal with anything that comes our way. We are praying for a very uneventful afternoon but prepared for something different. This is one of those major hurdles in our marathon and we will not snag our toe. I am off to stretch for I have a purpose.
12:49 AM 12/3/2003
Stem cells are in. Sydney had a rough time with nausea during the infusion. Currently her pulse is down and her BP is up. These are fairly normal occurrences. She is resting peacefully. She passed out from sheer exhaustion immediately after the transplant. Keep praying -- we have a purpose!!
DAY 1 - KRYPTONITE
5:30 AM 12/4/2003
All right, now I am starting to get a little nervous. I am guessing that renal labs are the kryptonite for SuperDad in NB world. This might also be the direct result of being prepared or having a wife that is pretty clever when it comes to body chemistry. Sydney's renal panel continues to be off. Sydney's BUN and creatinine levels continue to be off. Her BUN (Blood Urea Nitrogen) is up to 37 (8 - 20 is normal). This is a count of the nitrogen produced by the urea that has been left in the blood because the kidneys have not been efficient at cleaning it out of the blood. This is a sign that her kidneys have taken a blow and are having a tough time. Similarly the Creatinine test is looking at how efficiently the kidneys are cleaning the blood of creatinine. Her level is .8. These tests are usually run in conjunction with each other to help the doctor predict which conditions (such as dehydration) may be causing the decreased kidney function. Sydney's potassium levels are significantly low and this is another area of concern. She has been given a potassium bolus (a syringe full of potassium) and put back on the heart monitor. So what does all of this mean? We know for a fact that Sydney's kidneys have taken a beating from the chemo. We know they have decreased function because of this. This is fairly typical for kids in stem cell transplant. It can be a direct result of her chemotherapy and just a sign that her kidneys are having to work a little harder. Her kidneys may return to normal in an hour, a day, a week, a month, or never. The key is that we do not know if this is a blip or a sign of acute kidney failure. This is where you have to pray real hard and hope your doctors know what they are doing. Most kids do this. Most kids return to normal and do not progress into kidney failure. I still do not like it. Once again I have insider information and I am praying real hard. Thank goodness I saved some prayers. I am also lucky that Chance and Monty had so many bad habits, as I have extra available to swear off when bargaining with God.
Sydney has definitely taken a blow. She continues to slow down although she is still showing signs of herself and I have seen her in worse condition. She is incredibly thirsty and has developed a never ending routine of drink water, puke, drink water, puke, etc., etc. We continue to make her walk the halls and play games and stretch. She usually argues at first but seems to tolerate and enjoy our little adventures once we get her going. She is still talkative and most importantly she knows Mommy and Daddy love her. She also knows that she is sick but understands that she is in the right place. She knows that everyone here will take care of her and she will get better. She has a lot of confidence in her parents, her nurses, and her doctors. We treat her normally and she assumes that all of this is a temporary condition and just a bump in the road. For this I am thankful. I shall continue to carry the mental burdens for I am SuperDad. I continue to look for the antidote to NB kryptonite and continue to have a purpose more than ever.
DAY 2 - A MIXED BAG OF NUTS
8:00 AM 12/5/2003
Well today is a mixed bag of nuts and I am not talking about the Dungan family but rather Sydney's condition. The good news is that Sydney's creatinine and BUN are back to normal levels. This is truly a testament to the power of prayer, blood chants, and the renal dance. I am really quite shocked at the results. I anticipated Sydney's creatinine and BUN levels to remain about the same, either increasing or decreasing in small amounts. I never could have imagined that they would go back to normal so quickly. This is a sign that the cause was dehydration, a direct result of the Mannitol and Lasix used to manage the fluid retention that we saw after the stem cell transplant. The goal is to keep the kids a little dry (vascularly) to keep fluid off the lungs so it really isn't that big of a deal in reality. However, it was scary because of the symptomatic similarities with acute kidney failure.
Sydney's potassium continues to be off even after significant potassium supplementation. Although this is potentially scary I am not particularly worried. With all of the things that have transpired over the last few days I am not surprised that her electrolytes are slightly out of whack. The potassium could also be a late effect of the dehydration and as we slowly bring the levels back up we will see her sodium start to normalize. It is a game of measures. Nurse Kendra (the Mouthcare Nazi) was just in to draw another lab to check her potassium after the last bolus and hopefully we will know something by the time I finish this entry.
Sydney's mouth has deteriorated significantly and mucositus is now at our doorstep. She is in obvious pain and we are moving towards a fentanyl drip to manage the pain. This is another expected side effect and something that we can deal with. It is far better than many alternatives. Sydney has slowed down tremendously and it is a battle for her to do just about anything. I am so happy that we instilled the routine of running down the hall to touch the mats. At first she was very happy to take the walk and get the exercise. She would frolic happily through the bone marrow unit giggling and laughing as we passed each nurse and doctor along the way. Now it is a bit of a different story. She now wears a scowl and stamps down the hall to touch the stupid mat giving everyone a dirty look as she passes by. Mean little twerp. God love her.
Last night Sydney was pretty uncomfortable and on several occasions either Lynley or I ended up in the crib with her to comfort her. In the wee hours of the morning I grabbed my blanket and crawled in the crib with her to rub her back and cuddle her back to comfort. The next thing I knew I had fallen fast asleep until, WHAM, the back of her hand came across my nose. I startled awake to hear her say "Daddy wake up, No snoring!!" She rolled over and drifted back to sleep. I took this as a sign that she was feeling better and I crept out of the crib and back to my bed giggling all the way. I love the ornery little twerp.
Well, that is about it in a nutshell (It is ironic that I refer to my thoughts that way isn't it.). SuperDad survived acute mental failure but what will the rest of today bring. Will SuperDad keep from snoring? Will he develop a super chant to conquer mucositus? Only time will tell. Stay tuned for the next episode. We have a purpose.
NO!!
5:50 AM 12/6/2003
Yesterday was pretty much the day of "No"s. Sydney do you want to do mouth care? - No!!! Sydney it is time to change you diaper. No!!! Sydney do you want to go for a walk? - No!!! Sydney, do you want to get in Mommy's bed - No!!! You would think this would foil us but we, as parents, of evil Sydney are prepared. It really becomes a game with Lynley and I to get her to do what we need her to do for her own good. Sometimes we try negatives like: Sydney do you not want to have your diaper changed? and at even more critical times we can ask: Do you not not want to not have your diaper changed? Many times this becomes frustrating for her as we massage the answer that we want to get out of her so it isn't all that effective for her but it is greatly effective at maintaining some sense of parental sanity. Lynley and I find comfort in getting her to at least unwittingly agree to do what we need her to do. Quite honestly the most effective way to get her to do something is to just start doing it and telling her while it is happening, although she does not seem to like it any more or any less. She is a bitter, bitter apple and deservedly so. She would be content to just lie in her bed all day and be left alone. I don't blame her and I know that if I were in her situation I would be even less agreeable but we have to do what is in her best interest - like it or not. The trick is to maintain normalcy in our lives and keep the gravity of the situation light. If we focus on her pain or discomfort it is depressing. That emotion wears on you and you begin to wear it on your sleeve. Sydney senses those feelings so it is important that the feelings we show are of confidence, comfort, love and all of the warm feelings that she needs to get through this, whether she is appreciative of them or not. I expect this condition of pain and discomfort to last for at least another week so I am documenting this philosophy as I know it will get harder as we go on.
Sydney's labs came back normal this morning. Her BUN and creatinine are absolutely where the should be. The first question that came to my mind was: Okay, does this mean we are out of the woods for kidney, liver, or organ failure? Unfortunately, the answer was definitively, NO! Much of what will happen with her organs has not yet had time to occur. In the coming weeks she will have massive fluid shifts as her white cells come to life. It would not be uncommon for her liver to double in size. I am not yet familiar with the medical mechanics of this but I am at least aware of the likely occurrences. The point is that there continues to be a delicate road ahead and we should be thankful that she has weathered the storms of the past so well. It is disappointing because I would love to hear that the tough part is over for my baby girl but I am content to be by her side. I just won't ask if she wants me there. It goes to show you that you can have a purpose whether your purpose likes it or not.
RATED R FOR GRAPHIC CONTENT
7:00 AM 12/7/2003
This is perhaps one of those things that I never intended to write in my diary. But, here goes. When entering stem cell transplant I was fully prepared for most occurrences related to the chemo and rescue. I had done my research and was prepared for just about every event. Some things I researched to see if I could find a way to make it easier on Sydney but others I just accepted as the way things are. I accepted mucositus as the way things are. Sydney had experienced mucositus during her first round of induction chemo. It was not fun but it was certainly bearable. I accepted that it could be more severe this time around. I remembered early on in this journey nurses coming from Paul's room crying as his father had finished mouth care. He was a dedicated Dad who mustered all of his SuperDad-dom to perform this task of cleaning his son's mouth. I knew I would have to walk in his shoes and I accepted it. There is not a choice of not doing it. It is critical to keep the mouth clean to prevent infection. So, I was prepared and I knew the possibilities.
They call mucositus, "mouth sores" which is perhaps the most inaccurate description I think you could ever hear. It gives you the vision of some uncomfortable little blisters in the mouth. No, mucositus, at least Sydney's experience, is not that. It is more like the picture one would get in their mind of ripping the top layer of skin off from her teeth to her tooter. It is bloody and gruesome and extremely painful. I discovered this in earnest yesterday as I returned back to our room after lunch to find both Sydney and Lynley crying. The top layer of her tongue had peeled off. There was a small bucket next to them full of blood and mucous with two bloody foam toothettes (foam toothbrushes) floating in the mixture. Once I discovered this and had the chance to view her mouth I began to understand and truly empathize with both Lynley and Sydney. To be honest, I was mad that I had not been there. Up to that point it had not been nearly as bad. Yes, it was painful. Yes, it was sad. But, it certainly was not this. So, what is the point? Why write it here to be relived again?
This once again got my research juices flowing and I hit all of my usual spots. There are no guaranteed answers but there are some promising ideas. So, I offer this to the fathers that follow in my footsteps. We are a little late in the game to start some of these but I encourage you to look into them. It does not need to be like this! First, there is glutamine. Occasionally it is added to the TPN but research indicates that the powder form used in a mouth rinse is perhaps the best method of delivery. Many parents have used this chalky concoction and found it to be a life saver. There is significant research regarding its medicinal value and in retrospect I would have made a decent argument for its use. It needs to be started on Day 0 but I am going to make a plea for its use even now. Ice chips have also been found to be effective, far more effective than many other methods. There are also a slew of other preventative measures that can be taken that I was not aware of until now. These are preventative in nature but many can also be used to supplement the healing process. A lidocaine rinse has also been effective at reducing the pain associated with the mouth care. I asked for it yesterday and I am still waiting for it but I will let you know how it works. For the time being there are no easy answers but if you have the chance I would try at least one of these preventative measures. Dedicated routine mouth care with periodex and nystatin just aren't always enough and if it is possible I would certainly try something in addition. These shoes that we wear today are not ones you will like to wear. Good luck, we all have a purpose.
VOODOO
6:00 AM 12/8/2003
Yesterday was a better day but, once again, it is all relative. Sydney's mouth continues to worsen but I think we have found a happy place in regard to her care. We have increased her fentanyl dosage for the third day in a row but her pain management seems to finally be where it needs to be. The lidocaine or magic mouthwash has also been a lifesaver. Before I perform her mouth care I paint her Nuk (pacifier) with the solution and put it in her mouth for a few minutes. Once the solution has had a few minutes to settle in I then use the toothette to paint her mouth with the lidocaine mixture. She will cry a little but I believe it is more from the fear of pain than actual pain itself. After a few minutes I then swab her mouth with chlorexidine and nystatin. Although there is still blood and the process usually makes her throw up I believe it is more mental than anything else. Her emesis has also changed from a clear to a yellowy color. Late last night we received a packet of the glutamine powder from the pharmacy and we will try it first thing in the morning. Dr. Eames was actually fairly supportive of the use of this concoction. I say fairly supportive but what I mean is that she did not come right out and call me a voodoo worshiper. She said they have had several patients use it with some success. But I figure, hey, I talk to her blood cells, I perform creatinine chants, and I do a little BUN dance when it is needed so maybe I am a little on the weird side. But hey, if it works for Sydney and provides a little comic relief for all of us involved then it is well worth the effort.
Sydney's blood cultures have continued to come back negative. That is wonderful news although we are still deep in the forest. It will be at least another week before we even start to emerge from the trees. She continues to spike low grade fevers and she has been retaining fluids. We had a dose of Lasix yesterday and that seemed to help the situation. Again, the idea is to keep her on the dry side. Luckily, this time we did not see her Creatinine or BUN freak out.
Right now there aren't really any funny Sydney stories to tell. She has been better but she still prefers to lie down. She is becoming weaker and it is obvious to me that we need to keep a concerted effort of keeping her exercised. Unfortunately, we are not allowed to leave the room due to her fever so we are having to be creative when it comes to her exercise regimen. She hates it and whenever she is on her feet she emits a soft and steady whine. I feel sorry for her but in another since I think this would be a great feature to have on any healthy toddler. It is kind of like putting a bell around your cats neck or the loud beep you hear when a large truck is driving in reverse. It is handy and we always know where she is. I also liken it to a car engine. As she speeds up the whine turns to a higher pitch than as soon as she returns to a stop the whine, too, returns to idle. It is only when she is picked up off of the floor and placed in our arms that the noise subsides. I know it sounds like cruel and unusual punishment and I know it sounds like a rather sad and morbid perspective coming from a father but stem cell transplant is not fun. I find myself reaching for humor as facing any of this head on would likely be unbearable. No one wants to see their child in pain and no one wants to cause their child pain but unfortunately in this world there is little choice. It is what we must do and I find that insanity is once again a necessary evil in this all to sane environment. I can not imagine doing this with a straight face. I am both heavy and light hearted. I am both attentive and aloof. I am both serious and funny. I am a walking ying yang but my purpose remains clear.
9:40 AM 12/9/2003
DAY 6 - MISERY
By definition we have entered what is anticipated to be the worst part of transplant. Days are not judged by Sydney's level of discomfort but rather if she is in crisis or not. Currently, Sydney is well medicated and I believe she is not in any pain although she is uncomfortable. She is not at peace but, then again, I would not expect her to be. Currently we have no emergencies so I am guessing that on the stem cell transplant barometer we would have to rate this as a good day. We have been battling the never ending fever. Her blood cultures continue to come back negative so there are a myriad of reasons for the fever. It could be the mucositus. It could be her body fighting. It could be her marrow struggling back to life. No one really knows at this point so we just keep praying, we keep talking to her stem cells, and we keep acting like everything is normal.
Sydney is talking far less. Most of her communication is in the form of hand gestures and directed grunts. She has stopped swallowing and a thick mucusy drool flows continuously from her puffy purple lips. We are changing her gown about once an hour as she refuses to wear a bib. I guess we have to pick our battles. Last night was a difficult night for Sydney. She woke up about every hour in pain. I would give her a bolus of pain medication and in about five minutes she would pass back out. We had several episodes of throwing up and she was not particularly happy. It is getting more difficult by the hour to keep her comfortable. She is miserable but we are happy to say that she is not in crisis.
Overall I am tired as last night was fairly sleepless. Although my mental acuity and cognitive functions are definitely waning by purpose is stronger than ever. Here is hoping for a better day for my baby girl.
7:40 AM 12/10/2003
DAY 7 - TIME FOR AN ATTITUDE ADJUSTMENT
Well, things aren't any better. In fact, it is anticipated that everyday will get worse until until we reach engraftment mecca. Her temperatures have soared to over 40 degrees C (that is 104 - 105 F). She continues to bleed from her mouth and her lips have now cracked and she is bleeding from them as well. We still maintain routine mouth care which is quite a chore. She knows that it will hurt and puts up a significant fight. It usually takes one of us to hold her down while the other cleans her mouth. We are having to be a little more aggressive with the cleaning as we want to remove as much dead tissue as possible to promote healing. For Sydney, it is the anticipation that is the worst. We hurt for her but have come to realize that it operates under the "bandaid theory" i.e. rip it off fast. She sleeps uncomfortably much of the time but both Lynley and I stay very busy with her care. About the time we finish one thing it is time to start the next. When we get a break we all try to sleep and relax. As much as we would like to to leave her alone to sleep it is increasingly important to keep her moving, exercised, and well maintained. The days are much busier than I had anticipated.
It is painful to watch Sydney endure this but I have come to accept that she will not get better until her cells engraft. Can you believe this is normal? This is what these kids endure and Sydney has had a decent ride on this particular roller coaster. She hasn't had any of the surprises or severe medical conditions. In some sense she is the poster child for stem cell transplant. So, I will feel very lucky. With that I have decided a change in attitude is necessary. Instead of focusing on the sadness of her condition and the pain that Sydney and both Lynley and I have, I am going to change things up a little. I am going to decide that this is all good. I am going to accept that she is getting better instead of worse. I am going to be confident, reassuring, and strong. I am going to talk to her stem cells with a stern voice and let them know that I am not playing games. I think stem cells can smell fear - but no more. I am confident. I am assured. I am strong. I have a purpose damn it and I am not screwing around!!! It is time. (Rocky theme)
6:00 AM 12/11/2003
WE LOST OUR LESS THAN SIGN
Yesterday was a better day for us all. Sydney finally broke her fever in the morning and was showing signs of improvement. Right now the improvement is more of a general feeling in the air but I am convinced that we are on the upswing. Sydney was feverless for about 5 hours. I take full responsibility for this as Lynley had to leave to deal with the death of one of our kitty cats. Georgy, who was actually a girl kitty, earned her little kitty wings. We do not know exactly what happened but, unfortunately, she has left us. In the mean time, I took care of Sydney. I feverishly cajoled her fever cells to stop producing heat. It was tiring but after hours of arguing with the little cells they finally caved in to my superior debating skills. Oddly enough, no one gave me credit for my hard work and dedication. They even went as far as to try and give me some uselessly medically sound and rational explanations for the reduction of the fever. What were they thinking? Later in the day she spiked a fever again and guess what? It occurred on my afternoon lunch break. Therefore, I had to enter into another tiring and long debate with her cells to get them back in line. After several hours they finally caved.
I have no absolute evidence but I believe Sydney's mucositus is improving. We switched to a new lip balm and her lips appear to look fairly normal. They are still puffy but they are no longer cracking. I have also noticed that she is much more tolerant of the mouthcare. She is still putting up a significant fight but we are able to do a good job of cleaning her mouth without much pain. I am able to swab areas of her mouth that were previously off limits. She is clearly in less pain even though we are being far more aggressive. Additionally, she is swallowing again. At first we thought it may have been the method that we were using to infuse meds orally but, now, it is clear that she is choosing to swallow. Her mouth also remains closed much of the time. She had not closed her mouth for several days and had previously allowed the mucous to pool in her mouth until it would leak out the corner of her mouth and down her chin. All of this, in my mind (yes, the one that believes in fever cells) points to improvement. Don't get me wrong we are not out of the woods with mucositus but we are seeing good signs.
The most important sign of her recovery is the loss of her less than sign. All of our previous white blood cell counts showed "<.1" which means less than 100 white blood cells. Today it shows ".1". I am still waiting on the portion of the lab that has the actual counts of white blood cells, segs, and bands but this is definitely an improvement. I was hoping (irrationally) for .3. My reasoning for the difference is due to the nose bleeds last night. Her platelets dropped rather quickly, as has become routine, and it took a while to get the transfusion going. My theory (which is another glimpse at my insanity) is that the other 200 white cells leaked out. I have several medically sound back up theories but they are not nearly as much fun.
The only hiccup that we have had throughout the night has been low oxygen levels in the blood. Sydney spent much of her night dodging the oxygen tube that was placed on her bed to "blow by" oxygen to increase her saturation rate. With out the oxygen support her saturation rate is in the low nineties and high eighties compared to the normal 100%. We have taken a chest x-ray this morning to rule out a problem in the lungs. Her chest sounds clear and we are hoping for a negative result.
It has occurred to me that over the past week or so I have been writing this diary more for both my own enjoyment/sanity and for the parents that will have to eventually walk this bridge when they come to it and less for Sydney. Today, I think that should be remedied. In many ways Sydney has become more an object of abuse and less of a strong little girl. The fact of the matter is that although I have talked about her medically and addressed the fact that she has had much pain and discomfort I feel that my words have not addressed her directly and what a strong, courageous, and loving little girl she is.
Sydney,
Your daddy is so proud. As I read the words that I have written over the past few days I cannot believe it is you. It isn't because you are better at this particular moment and I can't believe the difference but, rather ,it is because I have not captured who you have been. I feel like I missed something in my words. Although I have written about your struggle it seems as if you have been an object of the process instead of the bittersweet and courageous little girl you are and, most importantly, my adorable twerprincess. You should know that you have given me strength and you have let me ride this roller coaster with you. Somehow you sense me and when I was worried you had your way of telling me everything was going to be okay. Whether you were patting my arm, rubbing my shoulder, or just sitting by my side, you were always taking care of me. It does seem backwards, but you gave me strength which I hope I have been effective at giving back to you. I don't believe you have ever doubted that you would be okay. I have always let you know that I am right here by your side. I have always let you know that you would get better. I have been positive, firm, and caring even when I was not so sure on the inside. But somehow you were. You have always had this strength, this undeniable belief that everything would be okay. I would love to say that it is because your parents never gave you an indication that it could be any different, which we did, but I think there is something more to it. You have something very special and everyone can see it. I hope you learn to as well. I will, of course, always take credit for your good qualities, after all I am your daddy and a strange one at that. But in this particular instance this special gift is all yours. In this case the egg certainly came before the chicken. You are a strong, brave little girl and I can't wait to see you grow up. Thank you for being my rock. Thank you for being my strength. And thank you for being my baby girl.
I will love you for always. I will love you forever. My baby girl you will always be.
Love, Daddy
7:00 AM 12/12/2003
DAY 9 -ONE LITTLE, TWO LITTLE, THREE LITTLE WHITE CELLS
Another day has arrived and today our labs show a WBC count of .2. I am still waiting on the diff. which will gives us greater insight into what is going on. Regardless, this is great news and, once again, medical proof that talking to the stem cells works. Boy, how I wish that were true, but since I take credit for everything else I might as well step up to the plate once again. It is not only talking to the stem cells that is important, I have found that singing helps too. Due to our lack of sleep and limited cognitive ability we have chosen to sing a family rendition of "Ten Little Stems Cells" in an effort to mobilize the little buggers. You can think of it as the "Rocky" theme for stem cells. We had tried other renditions such as singing "99 little stem cells in the bone marrow, 99 little stem cells, one sticks on, turns into white cell, 98 little stem cells in the bone marrow" but we found that it was too difficult in our altered state and in all actuality was not as motivating to Sydney's stem cells. Once again, insanity seems to be the key to surviving this reality and makes a scary situation much more bearable.
Sydney continues to show new signs of herself. This morning she has chosen to be far more talkative. She is drinking water and choosing to be more active. Her mucositus continues to cause pain and just after I had said such promising things about her "theoretical improvement" yesterday she lost the top layer of skin off of her tongue again. That is perhaps the most painful thing to watch as it usually comes off on the toothette that Lynley and I use to clean her mouth. I can only imagine the pain that she is enduring. Other than that snafu and some electrolyte and potassium imbalances she continues to improve. Our purpose lives on....
5:40 AM 12/13/2003
DO A LITTLE DANCE, MAKE A LITTLE WHITE CELL, GET DOWN TONIGHT
Sydney's WBC count is .4 today!! I know what you are thinking. Here he goes again. He will take credit for the increase because of his talking to the stem cells or because he sang to them again. But, no, even as those are obvious factors in Sydney's recovery, the momentous gains that we achieved today must have been due to my new stem cell dance. Ironically, it also rained outside later in the day. I have found that my stem cell dance closely resembles my rain dance and, therefore, I must have been sending out some rain mojo as well. Regardless, we are extremely excited to see Sydney bounce back so very quickly. We still have lots of healing ahead of us but it is thanks to all of the prayers and love that has made this battle so bearable and endurable for Sydney.
Her mucositus continues to be an issue and the pain is still evident. About 1 minute after performing her mouthcare she has started screaming in agony. The current belief is that either the lining of her stomach or esophagus has started to slough leaving newly exposed tissue. She is choosing not to spit out the chlorexidine and it is making its way down to her tummy, stinging all the way. We continue to give her boluses of Fentanyl in addition to her PCA but the pain coverage certainly is not total. We are hoping, for Sydney, that this trend subsides for her today. We had small battles yesterday. We are in a daily battle with potassium, several electrolytes and to a lesser extent her BUN. It appears that several of these inconsistencies are due to fluid shifts within her body.
Sydney continues to improve in my eyes but she spends much of her time asleep and yesterday she spent much of her time mad at Daddy. I think her attitude adjustment is due to the albuterol treatments (3 times per day to boost her oxygen saturation levels) and the addition of some particularly nasty antifungal medications. To be honest, I have also encouraged some of the behavior. She chooses not to exercise which is an integral part of recovery. So, I find myself taunting her. She clearly wants to sleep and I will get out her toys and put them just out of her reach and begin playing with them. This makes her angry and she will get up and bat the toys away from me. I place the toys in such a way as she has to use all of her muscles to get them away from me. I know it sounds cruel but if I give them to her and encourage her to play with them she will just hold them and fall back to sleep. It is actually pretty funny but I have been effective at keeping a straight face. She is such a bitter little snot but it is all for a good cause. I don't believe that the behaviors that both she and I share will be long term and I think it has been an excellent work out. Only time will tell but I am content, at this point, to be a bad daddy if it will make her better. I am a good daddy with a purpose - just don't let her know right now.
WONDERING WHERE ALL OF MY WORRIES WENT
6:30 AM 12/14/2003
Upon reflection I am pretty sure that yesterday was a better day. Sydney experienced her first fever free day in as long as I can remember. This meant that we finally had the opportunity to get her back out into the hallway and on her mission to touch the mat. It took some cajoling and she was not the least bit happy about it but she made it all the way to the mat. She clearly had some leg pain (most likely bone pain from the GCSF) and she was emitting a steady moan but she made it. Once we got to the mat she even took the time to dig through the movie library to find a movie to bring back to the room. We were incredibly proud and as soon as she was ready Lynley scooped her up into her arms to take her back to the room. Perhaps today she will make it both there and back. Before we made it back to our luxurious suite Sydney spied a wagon. We were happy to see that she demanded a wagon ride before calling it a night. After about 10 minutes of rolling through the hall we convinced her it was time to go back into the room. She was not particularly pleased about that but we bartered and sure enough she came back in the room - in her wagon.
Sydney's WBC count is up to .9 today. Another huge jump for us and another significant sign of her improvement. Her mouth appears to be improving significantly and there is a general feeling in the air that we are recovering in leaps and bounds. I don't know that there is a definitive moment that I could pinpoint to say that this is when Sydney got better but she seems to have passed that point. It really is amazing. Looking back over the past few days there wasn't a single incident that gave us a clue that she was getting better. Problem areas in Sydney's life just stopped occurring. Electrolytes stopped being as far out of wack. Her temperature stopped vacillating from the extremes. The whines and cries became less frequent. The mouthcare became easier to perform. Her oxygen saturation rates stopped falling with such frequency. Her platelet dependency became less severe. The blood in her mucus became thinner and thinner. Her nausea became less violent and frequent. She was coughing far less. Her chest sounds less raspy. She stopped having tremors in her sleep. She slept more peacefully. She started talking again and, most importantly, she decided Daddy wasn't such a bad guy for playing with her toys. Like I said, I can't pick a specific instance but Sydney certainly appears to be on the upswing. Recovery is in the air.
It is so nice to see a better day. My purpose seems justified.
12/15/2003
MEAN DADDY
Sydney continues to improve. She is still sleeping much of the time but it is clear that she is on the road to recovery. Today her WBC count is 1.4. She slept through the night for the first time in weeks and guess what?? That means that we did as well. Sydney still requires daily transfusion support and a slew of medications but her dependence upon much of them is waning. I imagine that they will start weaning her from the fentanyl today. We are still experiencing pain but the source is unclear. Perhaps a night of rest was what was needed.
There are flashes of our Sydney. She is not spunky by any means but we are starting to see her personality more and more. In fact, here is an example for the history books. Prior to some of Sydney's medications we are instructed to give her a premedication of Tylenol. This is a small syringe full of purple solution. During the worst days of mucositus anything that we gave her by mouth had about a fifty percent chance of coming back up. She became very hesitant to take anything and it was always a battle requiring the two of us to get her to take her medications. One of the tricks that she learned was to spit out her Tylenol and mouthcare. Although I clearly understand her motivation, it is more important that she gets her medications and performs her mouthcare. This is a battle that we have never given up on. Sydney always looses no matter how much she fights. I think we are better off today because of our dedication to making sure that she took every one of her meds and performed all of her mouthcares. I think Sydney also understands that we are going to perform these tasks whether she likes them or not and that they are to make her "all better". Anyway, yesterday afternoon as I was alone with Sydney it was time to give her a syringe of Tylenol. We debated for a few seconds and then I injected the solution into her mouth. She promptly spit it out. I told her in a very stern voice that she was a bad girl and that she knew she was not supposed to spit out her medicines. It was clear to me that she had spit it up out of spite rather than fear of it disrupting her tummy. I then went to the nurses station and asked for another syringe of the viscous purple concoction. Upon its arrival I explained to Sydney that she needed to take her medicine like a good girl. She did without incident. I praised her for being such a good little girl and she went back to playing with some toys in her crib. After about ten minutes of happily playing in her crib Lynley returned to the room. All of a sudden the water works started gushing. Sydney started wailing to Lynley. Sydney told her Mommy "Mommy, Daddy mean to Sydney!! - whimper - whimper - whimper Waaaah Daddy, bad Daddy!!" Lynley immediately knew what was up and both of us looked at each other trying to keep a straight face. Yes, our baby is back. What a wonderful purpose we have. This is much easier when you realize that these are just smaller battles in a much bigger war. One step at a time. One minute at a time. And remember to enjoy everything that you have at every moment.
6:30 AM 12/16/2003
THANKFULLY WAITING
Sydney's WBC count is 2.8 and she is continuing to improve. She still has pain which has become our biggest obstacle. At this point, I personally believe it is gas pain. It is my theory that Sydney's esophagus and tummy have begun to slough and she is having difficulty processing the tissue. This is being manifested in gas pain and diarrhea. Unfortunately, gas pain is not controlled very well by Fentanyl and could be the reason that we continue to see Sydney moan in pain. To me, it appears to occur prior to a bowel movement or the passing of gas. Today, we will manipulate some of her meds to try my theory out. Her BUN continues to be elevated at 27 and although this is above normal it is not necessarily cause for concern at this point. On all other fronts Sydney is showing signs of improvement. A return trip home prior to Christmas is looking more likely than not.
Sydney was in a bad mood for most of the day. Although there were moments of sweet snuggles much more of the time was spent with mean snottiness. She had absolutely no tolerance for most activities and chose to be a bitter apple. Honestly, I do not blame her a bit and I can only imagine how I would feel in her situation. I just want her to be happier. I am hoping to make that connection today that makes it "all better." Although it is good to see the ornery side of her, I am also anxious to see the sweet side again too. At least now, I know it will come back. I know she will live and I know we will go home. It is quite a different feeling from the beginning of transplant when there are so many scary unknowns. So, I am content to wait. I am content to be a good daddy or a bad daddy depending on what is required and I am just very thankful that I have the opportunity to be by her side. Thankfully waiting by her side - I have a purpose.
A DAY OF DE-SNOTTING THE SNOT
7:20 AM 12/17/2003
Another day has dawned and Sydney continues on her path to recovery. Today her WBC count is 3.5 and her ANC is consistently over 1500. Although she is still not in the normal range of WBC (5.5 - 15.5) and ANC (>2000) her recovery has been nothing short of incredible in my eyes. I think everyone is a bit surprised. Today she will receive her last dose of GCSF (basically, a WBC incentivizer) and we will start to see her counts level off. She continues to be extremely platelet dependent. She is requiring a transfusion of the "blood bondo" every day and I would like to see this change. I cannot imagine that we will go home with such a dependence but I could be wrong. Of course, this brings up several rational and irrational theories. I am wishing more and more that I had pursued a medical degree instead of an accounting and finance degree. I am not experiencing fear which is quite different than the beginning of this journey. I have an incredible thirst for knowledge. In some ways it is though I am outside of the box looking in. I can detach myself from the reality of the situation from a medical perspective. This is a nice addition to my psyche as I can make sense of so much more. It is another indication that knowledge is power. Regardless, today I will have several questions for Dr. Eames regarding Sydney's platelet dependence.
My other major task of today is to be a good daddy. Perhaps I will do it by being a bad daddy but, once again, I find myself in need of "Baby Wise - the Neuroblastoma Edition." Sydney continues to be angry and spiteful. I still do not blame her but I truly believe that she would be a happier kiddo if I could help her out of her funk. She continues to spit out meds out of spite and although I have found that being stern and clear has curbed the behavior it takes a considerable amount of patience on our part and it takes a while for Sydney to come to terms with her anger. I would like to reduce her fits of rage regarding her medications and make the connection that snaps her out of it. I don't know what the answer is but I will find it.
There have been several other examples of her spiteful behavior and signs that she is aware of her actions. For example: Yesterday the physical therapist came in to work with Sydney. This is a daily occurrence to ensure that Sydney continues to use her body and avoid losing muscle mass. Sydney was sitting on Mommy and Daddy's bed next to a giant 5 foot teddy bear that someone was nice enough to give Sydney. The bear has a large pair of mittens slung around his neck. The physical therapist was attempting to get Sydney to put blocks in the bears mittens. Sydney slid down on the bed into a sleeping position and disregarded all attempts to garner her participation. She feigned sleep. She feigned pain. And when all of that did not work she just lied there in complete defiance. Yes, I know, everyone is completely surprised that this is indeed my daughter. After about 15 minutes the therapist gave up and left the room vowing to try again on the next day. As soon as the door shut Sydney jumped to her knees, shuffled over to the bear, and began placing blocks in the bears mittens. I could not decide whether to laugh, to be encouraged, to be disappointed, or to be mad but, sure enough, my little twerp had made up her mind. I immediately ran out the door to grab the therapist and have her peak in the window. Yep, that was my little snot. How come I know my mom is reading this and thinking that this is some how deserved? Regardless, I think Sydney will be a happier little girl if I can get to the bottom of this behavior. So that is my goal - retraining my little twerp to be happy. I will find the solution. This certainly could not be hereditary:) I have a purpose!
PLATELET SAGA
7:30 AM 12/18/2003
It's alive!!! Sydney started talking in earnest. No longer are we hearing the muddled moans. Yesterday words started appearing again. Although the start of the day was much as the many days before by afternoon Sydney was starting to communicate again. She spent several hours sitting up playing with toys and during the many walks up and down the halls she was clearly out of distress. Her jaunts out to the play mat where filled more with youthful exuberance and less with the audible groans of the days before.
We made progress with mean Sydney throughout the day and it is clear that her anger is subsiding. She is still showing sporadic fits of rage but for the most part she is turning back into herself. Additionally, she is differentiating right from wrong. Last night as Sydney, Lynley, and I gathered on her crib it was once again time for her to take her medications. She told us that although she knew that the medicine would make her tummy feel better she was going to be a bad girl because she didn't like it. It was really interesting to watch her mind work. It was as if she was trying to rationalize it to herself but couldn't find decent justification. She knew it was for her own good. She knew she had to take it but she just could not bring herself to do it. This was a very different scene from the days before because she wasn't in a rage and she was communicating with us. This was something that we could deal with. After a few minutes of talking she took it with out incidence and we praised her with a multitude of hugs, kisses, and cheers. It was clear in my mind that she was happy with herself. She still did not like it but she was proud that she had made it over that particular hurdle. I am hoping that today she will be back to taking her own medications. She is improving.
Sydney's blood is continuing to play games with us. Today her WBC count fell to 2.9. It is strange that it fell today and not tomorrow. Yesterday was the last day of GCSF and it would have made more sense to see her counts to continue to rise. It is not necessarily problematic but it is yet another medical question in the back of my mind. Additionally, Sydney remains extremely platelet dependant. In fact, yesterday could have been called the day of the platelet wars. The doctors had decreased her platelet threshold back to 20,000 (down from 40,000) In the morning her platelet count was 29,000 which meant we would wait about 12 hours for another test and then almost assuredly a transfusion. Lynley's concern has been how quickly the counts fall from 40,000 to nearly nothing. Like clockwork in the early afternoon we were once again faced with a continual bloody nose and other signs of her need for platelets. Our discussion with doctors yesterday centered around the platelet issue. Our questions were: "Why let them get so low?" and "Why not maintain them at a higher level so that we can avoid the nose bleeds etc.?" I would like to say we got a satisfactory answer but we really didn't. I do not think that they were hiding the answer but I think we were just receiving the standard answers - all of which we already knew. Yes, the platelet issue will resolve. Yes, the platelets are the last cells to be made. I am not concerned that her platelets are still low. What I am concerned about is why we allow them to get so low. One of the answers we received was to reduce her exposure to blood products. I have been trying to make sense of this in my mind. What would the exposure difference be if we were transfusing at 40,000 instead of 20,000. Does Sydney's body at this point in time burn platelets more quickly at higher counts? When she starts to produce platelets will her body "level off" temporarily somewhere between 20,000 and 40,000? Perhaps, I have become too cavalier about blood product transfusions and the difference between getting an extra transfusion of platelets outweigh the risks of her daily nose bleeds. Perhaps the low platelet counts are somehow stimulating to the body to produce more. Those are the only reasons that I can see that would justify the argument. Otherwise, she would be receiving the same quantity each and everyday. Regardless, this is another reason I wish my initials ended with MD instead of starting with them. Today we will figure it out but until then I think everyone knows that we will continue to give them a hard time until we understand the mechanics of the choices that are being made. I even asked our nurse if 911 was a direct dial number from our room. Luckily we all have a really good relationship and they know where I am coming from. I have a purpose.
NOODLELESSNESS
7:00 AM 12/19/2003
5.8!!! That is right. The little twerp tricked us, once again, and decided that she was tired of playing around with fledgling WBC counts. 5.8 is considered normal along with her ANC which is well over 3000. Yesterday she received her final dose of GCSF so we can expect to now see her counts level off. Over the past few days they have continued to wean her off of Fentanyl and she is now receiving less than half of the dose that she was requiring. I imagine that tomorrow she will be off the pain medication entirely. Sydney does continue to experience bouts of pain but we believe that they are a result of the gas generated from the waking of her bowels. The last two nights she has let out sporadic moans that seem to last until Mommy or Daddy crawl up into the crib with her. It is a moan that sounds like "eh - eh - eh - eh" and lasts for several minutes. It is usually followed by the passing of gas. The funny thing about it is that Sydney will stop moaning the minute Lynley or I get in the bed. This begs the questions of whether she is training us or whether there really is pain. I think the doctors, nurses, Lynley and I are all in agreement that there is some level of gas pain. It is enough to wake her from a sound sleep but it is small enough that she can be comforted by her parents. Another indication that the pain is real is that we can follow the pain with her heart rate. As she gets more uncomfortable we see her heart rate go from the 130s up to the 160s and, boom, the moaning starts. As soon as the gas is passed everything returns to normal. Mylicon appears to work well throughout the day but I believe its sporadic use throughout the night is allowing the disturbances to occur. It is an oral medication which requires us to wake her up to administer it so there is definitely a trade off. Each time the pain occurs we believe that it could be the last but we are continuing to be surprised.
Yesterday evening Sydney was disconnected from all of her medical apparati for about two hours. The goal was to give her some freedom, some unrestricted exercise, and hopefully an increased appetite. Although Sydney still chooses not to drink she did eat a little yesterday afternoon. She ate several goldfish (crackers, not real fish, she isn't allowed to eat real goldfish yet) and even a couple pieces of popcorn. Although she threw up later in the day it was quite exciting to see her appetite start to recover. To meet our goal of going home on Monday we will need to continue to see significant improvement in her thirst. Currently we are manipulating her TPN and medications to induce a hunger and thirst response. Perhaps today will be the day.
Sydney continues to improve emotionally. We are having fewer sporadic fits of anger and most are completely controllable with a little reasoning. We are offering her either/or choices such as: "Do you want to drink some apple juice or take your Mylicon?" Yes, the answer to both is still a resounding "No!!" but, she seems to understand and she takes her medication with much less of a battle. We continue to reward her good behavior and that is starting to be more effective again but, hey, she is two and a half years old. As far as Sydney is concerned, she is ready to go home. It is nice to spend so much time with Mommy and Daddy but she is anxious to go see her animals and play at home. This is really the first time we have seen her make the conscious decision of wanting to go home and it is really interesting to see her grow and mature.
As life has continued to revolve outside of these walls it still seems like time is standing still in our room on 3 South. I don't know whether my perspective has changed so greatly that I am no longer concerned with what is going on outside of this room or rather if it is just a condition of the isolation. I have become so comfortable with this environment I can't imagine life any other way. It brings back memories of Sydney's original diagnosis and how concerned I was that life would never be "normal" again. Now that I have come to accept this reality as the norm I feel the exact same way but my norm is the complete opposite. I guess it is a testament to not only Sydney's resilience but a parents as well. I have discovered three realities so far and I know another one is coming. First, there was normal parenthood and all of the trials and tribulations that is inherent in raising a child. It was life changing and I began to realize that there was a new level of happiness that was beyond anything that I had ever experienced. It was now more important to play with Sydney than to play golf three times per week. I was happier. The next stage of Daddyhood for me was diagnosis. The first month or so gave me an entirely new perspective on everything in life. I learned to appreciate all that I had and my priorities changed. I received another gift and although I wish it had not been cancer it made me a better person. I know it sounds odd and I know I have mentioned it before but I have had some of the happiest days in my life time during this period. All of a sudden what I had was far more valuable and the appreciation was even greater. I guess it goes along with the saying that you don't know what you have until you loose it. It did not take long to learn that lesson. The third stage and the one that I am currently living is more of a fog. I don't feel as much pain or worry. I have grown to accept where and what I am. I have accepted that my daughter has cancer and can talk about it without fear or sadness. I am comfortable in my skin. I still love more. I still appreciate more. But now, I have come to accept that this is who and what I am. I have gotten used to my new priorities and to our new lives. I have accepted them but now, as I get ready to enter a new stage of Sydney's care. I am curious as to what this new world will bring. Who will we become. As we reenter our lives again what will it feel like. It is hard to explain but it is a result of being away for what seems like so long. I feel like the old man that fell asleep for twenty years under the tree and then awoke to find a different world. Regardless, I don't fear the change. I have gotten used to the skin that I wear changing frequently. I guess I am getting ready to be noodleless for a while as well. There is still a long way to go but I have my purpose to keep me company.
8:00 AM 12/20/2003
SHE'S BACK!!
It woke up at 5:45 AM. "Momma, wake up!!!" ..... "Momma?!?" .... "Come to Sydney's bed!" .... "Watch Sydney TV!" Lynley oozed out of bed and crawled up on to the crib. "Daddy?!?" .... "Daddy, wake up!!!" .... "Daddy come, Watch Sydney TV!" I stumbled to the crib with my eyes half open.
Waking up at 5:45 AM on a Saturday -- Annoying!
Being beckoned from a restful sleep by a demanding two-year-old -- Maddening!!
Getting to cuddle up, hold hands, and watch cartoons with Lynley and a talkative Sydney -- Priceless!!!
Life doesn't get much better than this.
BREAK OUT - A BITTERSWEET EXPERIENCE
6:00 AM 12/22/2003
Well, I was bad and did not write in my diary yesterday. I guess it was because I did not need to. Sydney is back. We spent the day chasing her around, performing magic tricks, and singing to anyone that would listen. During the last couple of days she has had the opportunity to spend hours free of medications, noodles, and her pole. We got the opportunity to run up and down the halls and reek havoc on all of the nurses. Looking from the outside in you would never know that Sydney was a transplant patient. Yes, she is bald. She still requires both platelet and blood transfusions frequently but other than that she is back to being a normal two and a half year old.
This morning we have our official "break out" party. At 8:30 AM we will bust through the streamers which have already been hung across the doors at the end of the hall. Rumor has it that the food de jour will be Crispy Cream Donuts. It is somewhat bittersweet and although it feels like the end it is really just the close of a chapter in our book. There is still a long road. We have radiation in two weeks, quite possibly monoclonal antibodies in a little over a month, and six more months of low dose chemo but, in my mind, it very much feels like the end. I guess it is that this hurdle is so large compared to the many that we have or will come to pass that it seems like the end.
I am still a little concerned that I will wake up tomorrow morning at home and before my eyes have been totally opened I will have sleep walked to the third floor coffee machine at wonderful Cooks (codenamed Home also). I have grown so many close bonds with the many nurses and doctors it will be really strange not talking to them everyday. In just the short month that we have been in transplant it feels like my world has changed. I have an entirely new group of friends and family that have seen me at both my best and worst and it will be odd to not be with them. It is another testament to how wonderful of a place this can be. Our family did not just have medical caregivers, we had friends and family caring for us. I continue to be in complete awe of their work and so very thankful for what they do - not only for Sydney, but us as well. I owe them a debt of gratitude that I know there is know way I will ever be able to repay. I know it will be nice to go home but this place isn't so bad either and I will definitely miss all of those that I have become so close too. I think I would like a benign fever at some point just to see them.
It has been a long road but it has been better because of those that surround us. Thank you for aiding me in my purpose. Although my address will change today my purpose lives on. I got my Christmas present early.
7:00PM 12/22/2003
HOME (THE REAL ONE)
We have now been home for a little over 24 hours and it feels so good. I can't really explain the feeling because it is like nothing that I have felt before. I expected it to be like every other time that we had been discharged but, for me, this time it was different. I am breathing easier and there is definitely a weight that is missing from my shoulders. It is funny, I know this isn't the end. I know that there are many trials and tribulations ahead yet I feel giddy and, at least temporarily, free. Perhaps tomorrow it will be another emotion but today I am relaxed for the first time in over half a year.
Sydney continues to improve both physically and emotionally. She tires easily and it is clear that she is battling a pretty severe case of separation anxiety. In fact, yesterday upon arriving back at the house it was time for her nap. Sydney was not the least bit happy about the prospect of sleeping alone in her room. It was important to Lynley and I to reintegrate her back in to our normal lives as quickly as possible. Even those with experience with this type of transition from transplant to the normal routines of life suggested that we return life back to normal very quickly. It is the normal routines that give them comfort. The problem was that I don't think anyone had this philosophical discussion with Sydney. As we left her in her crib and left her room she started wailing. At home we follow the fifteen minute rule. We give her that time to cry it out - so to speak. If she cries longer than that then we will go back in and check her diaper, etc. to make sure there isn't another issue. This has worked very well since her birth. Unfortunately, we did not get her fifteen minutes. Within about five minutes we heard continued screaming and then a large thunk. I raced back into her room to find that the escape artist had climbed (more like jumped) out of her crib. Let me just tell you that it scared the living daylights out of me but I am happy to say that even with low blood counts, questionable platelets (the body's blood bondo), and post transplant weakness she was just fine. She was mad - mad as hell - but fine. It took both mommy and daddy to calm her down but eventually she made it back to sleep. Trauma averted.
Sydney had a good afternoon and evening with the family and even had a visit by her great grandmother, Gammy. She snacked in small amounts but was just generally happy to be home. Last night was another battle of getting her to be comfortable in her own bed again. We were up several times throughout the night and Lynley spent several hours sleeping in her bedroom. Somehow at 5:00 AM this morning she ended up by my side in bed. She patted my hand and said "Daddy, wake up! Daddy!!" followed by "I love you!!" upon which she flopped over and fell back to sleep. Life is good!! It is busy and we are running to get back to normal but I am so thankful to have my purpose and have it at home.
5:54 AM 12/24/2003
SLEEPING BEAUTY
Returning back to normal seems to be coming quickly. Although we spent half of our first day back at the clinic and the remainder emulating Santa Claus, Sydney seems to be improving very quickly. She slept all through the night without as much as a whimper. No gas pain. No fear. Just a happy little two year old resting peacefully throughout the night. Well, you see, I spoke to soon. My precious little sleeper just woke up wailing my name. Not a problem and nothing a dry diaper was not able to cure.
Although I continue to feel a weight has been lifted from my shoulders, there is a tremendous amount of catching up to do. I do not know what it was about transplant but it made life outside of our room disappear. In that world there were no bills, no office work, no shopping excursions. It truly was isolation. I did not notice it as much until we got home. Perhaps, it is because I did not pay attention to anything in the outside world or, perhaps, I did not want to face it but there is certainly a bustle in the air. Maybe it is just the Christmas spirit but I, too, am anxious. I have fifty million things that I should be doing but I will not do themtoday. I want to jump up and scream to the world. I want to tell them how thankful I am and how happy I am for Sydney. I want to dig deep into the trenches of the Christmas spirit not only for Sydney but for everyone else that is out there in our lives. I want to rebond with all of my friends and get my office back with full force. I want to get back into "Lunch for Life" as it is continuing to grow. There is just too much to do. It is surprising how much I have missed without even knowing it.
On a side note two days is far two few to fully get in the Christmas spirit. It is not that I am advocating the start of Christmas at Halloween like has become commonplace in the nation's malls but two days just isn't enough. In our spare time Lynley and I have been playing tag team shopping. We each get the sparse hour or two to jaunt out and get the gifts that we need too, but it just isn't enough. How do you show your appreciation to all of those that have surrounded you. We both feel the need to do something for all of those around us but we have come to realize that there is no way that we will be able to achieve it for Christmas. Perhaps our future freedoms from the chains of the inpatient hospital stays will give us the needed time to focus on repaying our debt of gratitude.
Regardless of all my ramblings about being busy it still remains that being home for Christmas with my family is more special this year more than ever before. I can't wait to see Sydney's eyes as she wakes up tomorrow morning. It will be nice to be a normal family having a normal Christmas. You never know what you have until you have lost it. Luckily, I keep my purpose close to my heart and I have no fear of losing it.
8:20 AM 12/28/2003
CHRISTMAS HIATUS
I had planned on updating my diary after we finished opening presents on Christmas Day. So, technically I still haven't finished or, I guess, saying Sydney hasn't finished would be technically correct. The great thing about two year olds is that they have not quite fully grasped the commercialization of Christmas. There is no doubt that Sydney had too many presents thanks to all of those that were so kind as to send gifts. She has mountains of toys. The funny thing is that she opens one at a time. She plays with it for about an hour and then if she hasn't been distracted by something else she will contemplate opening another. Sometimes she chooses to play with another toy and sometimes she chooses to open another Christmas gift. If you factor in nap times, meals, clinic visits, etc. I think she has only opened about twenty gifts so far. At this rate I am thinking that Christmas may be over sometime in the middle of January. To be perfectly honest it has been very nice but also extremely busy.
Since our return home we have spent two days in the oncology clinic receiving various blood products. She continues to be extremely platelet dependant requiring transfusions every other day. Other than that she is continuing to improve. She still requires nightly IV nutrition but her appetite is improving. I imagine that tomorrow could be our last night of TPN and lipids. She still is not eating enough to sustain herself but she is getting closer. Speaking of TPN and lipids, we did have one night that was particularly scary and unfortunately it was my fault. Friday night we hooked up her noodles in the normal fashion. We were a bit hurried as Sydney was tired and irritable but I am not making excuses. We went through our normal routines injecting all of her medications into the IV bag, programming the pumps, etc. What I did, however, was put the wrong noodles in the wrong pumps. What followed was the fact that her lipids were infused over three hours instead of the normal twelve. At about 11:00PM I awoke to a loud beep emitting from her room. I ran in and at first I thought that the pump was low on batteries. I fumbled around in the dark to change the batteries without waking her up but it did not solve the problem. What I then discovered was that the lipid line, which is normally white in color was running clear. As I traced the line up I discovered the mistake. The beep was from the fact that the lipids were finished. The had run dry and the pump was beeping because of air in the line. I was immediately filled with unimaginable guilt and fear. I shut off the pumps, clamped the lines, and called the on call nurse to explained the situation. Fortunately, my mistake was not life threatening but it would be difficult for her liver to process that volume. Linda, the on call nurse, reassured me that everything would be okay and told me that the good thing about my mistake was that it would never happen again. Boy is she right. I then followed that phone call with another to Dr. Eames who also reassured me that everything would be okay but she also suggested that I not make that mistake again. They were both extremely helpful at making me feel better and both explained that given Sydney's current condition the effects would be relatively benign. Regardless, I did not fall asleep until early morning. I am still feeling some level of guilt. Although I know it wasn't a horrible mistake it was enough to shock my system. I am working on getting over it but perhaps keeping a little of this feeling in me will keep me more alert and keep my eye on the ball. I still have a purpose I just have to remember not to rush it.
8:00 PM 12/29/2003
NEVERENDING CHRISTMAS
Sydney continues to open Christmas presents. I think this could be the never ending Christmas Holiday. It continues to crack me up but I fear that we will never finish at her rate of two presents per day. This morning we made another trip to the oncology clinic for a refill on platelets. Sydney's white count continues to be on the low side but, all in all, she is recovering as expected by the medical community. At this point in time we are receiving platelets twice per week and hemoglobin once every other week. As time passes we should see her little body start to stabilize. Her appetite continues to improve but we still have not reached the point of self sufficiency. Although she continues to eat more everyday the amounts are still miniscule. It is tough to figure out what is going on. Sydney is clever and knows how to manipulate us. Whenever she is propositioned to do something that she does not want to she complains about belly pain. We have seen this behavior frequently at the dinner table but we are starting to see it in other areas of her life and at times that seem suspect. It appears that her belly only bothers her when she wants something or when she doesn't want to eat. It is tricky as a parent to figure out the right course of action. Previously (before transplant or neuroblastoma for that matter) I would have been more inclined to be firm regarding her eating habits and her manners at the table. However, anorexia (she is actually classified this way medically) can be long term with many kids and has to be dealt with very carefully. Lynley and I have both spent a lot of time talking to counselors and medical staff to ensure that we are doing the best that we can to get Sydney's appetite back to normal. Unfortunately, there are not any absolute answers. There are a bunch of "don'ts" but there aren't a lot of " dos" that guarantee a quick recovery. We are following many of our old rules of conveniently keeping snacks around the house. The idea is to get her interested enough to take a bite as she passes by. Generally we don't ask her to eat but, rather, we give her the opportunity to eat frequently. This works and keeps her putting food in her mouth but, it certainly isn't a long term solution. We are also aware from past experience that it causes its own behavioral problems that we will have to deal with in the weeks to come. The fact of the matter is that it has worked in the past and we are prepared to deal with the upcoming fights at the dinner table. For right now we just want to keep giving her the choice and the opportunity. Hopefully, the days to come will bring more appetite and less IV nutrition. In the scheme of things we are dealing with small potatoes in the world of neuroblastoma. There are so many others out there fighting infections, fighting their disease, and fighting for their lives. Honestly, my thoughts are with many of them. We have it pretty easy right now and I pray everyday that things continue to go well for us. Knock on wood. We have a purpose.
THE EVE OF CHANGE
6:00 AM 12/31/2003
Well here we are on the eve of a burgeoning new year. I am having trouble this year coming up with resolutions. Truth be known I swore off most of my bad habits so it has been difficult to come up with a really good resolution to stick to. I would like to resolve to cure neuroblastoma next year. I think that would be a great resolution, however, I know that that is a long shot in such short notice. As I make my list of things to accomplish over next year that one has to be at the top of my list. I have to find a way to continue to spurn more research. I have to make that connection to people that says this is important. I want to look back over next year and see that I have made a difference. I want to see that these kids lives are changing for the better. I want to know that the parents out there are more comforted throughout this journey and that their children are better off for it. I need to create change and I just haven't yet figured out how to do it. I still hold out that by achieving the goal of raising 10 million dollars for research that we could save hundreds and thousands of lives. This year I need to make that connection.
Also coming to a hospital near me is the birth of my new son. I resolve to be a good daddy. I have never been a daddy to a son before. I am still in disbelief that he will be here in two short months. With all that has transpired with Sydney time has just flown by. It is once again time to read up on new born parenting. At least this time around I am already prepared for the sleep deprivation. But, regardless, there is still much to do to prepare but I will be prepared with miniature football in one hand and a pacifier in the other.
This has been an introspective morning and my next resolution is by far the most important but, alas the creature is stirring and there is much to do this morning. We have an oncology clinic visit this morning and I need to have her labs drawn and delivered by 7:30 AM. I am still yet to shower, kiss my wife good morning, and tell her how much I love her so this is all I have time to write right now. Sydney is continuing to improve and although I know that we will be on TPN throughout this week she made real stabs at becoming self sufficient yesterday. We had a pleasant dinner and she sampled everything on her plate without incident. In fact, she was the last to finish eating. I can not remember the last time that occurred. Well I am off, my purpose is calling.
I FINALLY EXHALED
1/3/2003 6:46 AM
Sydney continues to make improvements. The sporadic bouts of pain have continued to subside. Although some of these pains were more behavioral in nature, we have continued to deal with pain in her tummy. Ever since we had surgery, Sydney has had pain associated with either eating, passing gas, or bowel movements. Over time most have subsided but we continue to have some sporadic pains which are clearly real. I know it sounds awful for a dad to say that his daughter has "fake" pains but it is true and obvious and it happens something like this. I say, "Sydney you need to pick up the books that you left on the floor." And, she replies in a sad, sweet voice "Daddy, Sydney has belly owies, cuddle me." Miraculously, if I pick her up the pain subsides immediately and within 15 seconds she is wanting to get down and go do whatever it was that she originally wanted to do before I asked her to pick up the books. I have actually tested this thoroughly and the minute I ask her to pick up those books, strangely enough, the pain comes back. So you be the judge, manipulative little twerp whom I love or books that produce pain from the mere thought of picking them up. Gotta love her!! Lynley and I have studied a lot on these behavioral issues and feel confident that we will work through them with Sydney. It takes a little patience and a lot of consistency.
Medically, Sydney is doing fairly well considering that she is a transplant patient. Her counts are starting to maintain themselves, albeit at low levels. Her body wants to maintain platelets at about 15,000 which is pretty low considering we usually transfuse at anything below 20,000. Sydney usually starts to bleed at about 12,000 and this situation can get really serious if they fall below 8,000 so we continually bite our nails. As a frame of reference, normal people maintain platelet levels between 150,000 and 450,000 and we were never allowed to start chemo until they reached 70,000. So what does all of this mean? It means Sydney is doing "as expected." It also means no bungee jumping, falling, or rough activities. Sydney's white blood counts have also settled in at low levels. Again, this is "as expected" and what will keep us in social isolation for several more weeks at least. Her white blood cell count has found its home between 2 and 3. Normal counts for these little infection fighters is somewhere between 5.5 and 15.5. On the hemoglobin front, she continues to need a transfusion every other week and is currently about a quart low. She is pale but we imagine that we will make it through the weekend before needing another transfusion.
I guess the third biggest barrier to Sydney's recovery is her appetite. I know this sounds like a broken record but she continues to eat more every day. What is more you ask? We count things in bites and everyday she has a bite or two more. Considering there are probably a hundred bites in any given normal day we still have a long way to go but the significant changes that we are seeing is in her attitude about eating. At first it was a battle. We did not want to force her to eat but instead give her the opportunity. In the beginning, even that opportunity made her mad. Today she will sit down at each meal for about 15 minutes without complaint. Additionally, she will snack in small amounts throughout the day. It is abundantly clear that her taste buds have changed and our biggest challenge is finding foods that she likes the taste of. She seems to like spicy foods and does not care much for sweet flavors. Unfortunately, spicy foods seem to cause more bowel discomfort so it is definitely a balance. Again, all in all, we are pretty lucky. These issues seem so relatively easy to deal with compared to many that we have faced over the last 7.5 months. If I was going to tell a parent what to expect after transplant it would be that the recovery process occurs much more slowly. I guess the easiest comparison would be this: After normal high dose chemo we would see changes daily when she started to improve. Those daily changes are now occurring over a week. It takes time but like everything else in this journey it becomes normal and we grow to accept new occurrences as the way things are.
On a separate note, I know I have been bad about updating my diary lately. It has not been that I don't have things to say, I have just been too consumed with everything else. I have been busy moving into a new office at work and I have spent my time at home relaxing with the family. It has been nice to step back and enjoy life without being consumed with neuroblastoma for a while. I have thought about normal things and I have done normal things. For a little while,b I just got to forget. I have had the opportunity to experience normal life and it has been wonderful. I guess it has also made me temporarily lazy. I am ready to get back on the horse again as there is much to do but the vacation was nice. I never thought that my fears would subside, even for a little while, and I guess it was a gift from Santa that allowed me to take a hiatus from this monster. It feels like I had been holding my breath for a long time and I finally got a chance to exhale. One of the things I have thought about a lot has been my New Years resolutions and what the next year will hold. As I reflect back I resolve not to forget what my daughter has taught me. This is the next year of our lives and my first full year with a purpose. I can't wait!!
6:00AM 1/5/2003
FIRST DAY BACK TO LIFE (SORT OF)
Well today is the first real day back to work for both Lynley and I since the beginning of transplant. Although we have worked throughout this period it has been part time at best. There is only so much that you can do from a hospital room at the wonderful Cook Children's Medical Center Resort and Day Spa. This morning I will be taking Sydney to the oncology clinic for her twice weekly checkup. She is clearly low on both platelets and Hemoglobin but it will be interesting to see if they transfuse her. Since her body wants to maintain counts at below transfusion levels it is kind of like flipping a coin. I understand why they think she should not be transfused but there has to be a point at which it becomes necessary. I have this vision in my mind of the Michelin man and if they do not transfuse her I think I will have to make my point by duct taping pillows all over her body to protect her from falls. Luckily, this morning it is really cold outside so she will be fully padded with winter wear. Her little legs (which are fatter now) are covered in little bruises just from the regular toddler activity of the past few days. I would think that if she is not transfused that instead of counting the bruises I will be, instead, counting the spots that do not have bruises just for ease in keeping track of her progress. If she is transfused I imagine that we will be at the clinic well into the afternoon and quite possibly all day. In that case my first day back to life would technically start tomorrow.
Sydney made large improvements over the weekend and with the exception of her bruising appears to be back to her normal self. Thankfully, the stem cell transplant seemed to remove half of her kitty cat cells so now I am only receiving "meows" to about half of my questions. She is behaving better and is back to the loving, sneaky twerp that I have grown to love. Although there continue to be small flashes of outbursts they are what I would expect to be normal for a two and a half year old. She, once again, seems to be happy in her own skin. Her appetite remains suppressed but I believe that is due to her nightly TPN and lipid IV. I am hoping that today I am able to convince the doctors to take her off so that we can see whether her appetite returns, not to mention that we are all tired of the inconvenience. It is not the chemistry project required to mix up the concoctions but rather trying to navigate the pole around our two story house which is difficult. Our house is definitely not IV pole friendly. I think my blood pressure is about twice that of normal levels whenever she is hooked up. I am in constant terror that the lines are going to get caught and that I won't be fast enough to keep it from ripping the central line out of her chest. I would feel much better if the noodles went in her arm but knowing that it goes straight to her heart is certainly unnerving. When they first put the central line in over six months ago I thought I would get more comfortable with the thought but I never have and I can't wait until those little noodles come out.
Well it is, once again time to prepare for a clinic visit. There is much to do before 8:30AM. I have to get myself shaved and showered, wake Sydney up, disconnect her from her IVs, draw her labs, get her bathed and dressed, and loaded up for an exciting trip. Luckily, she still thinks that we go to the clinic to see the "fishies" and visit the playroom so, all in all, it will be a good day for Sydney. We have a purpose whether she thinks so or not.
6:13 AM 1/6/2003
FRUSTRATED, BUT SOMEHOW THANKFUL
I am not the least bit happy and I have gone beyond tired, but perhaps this isn't so bad in the big scheme of things. Sydney has decided that it is totally unacceptable for her to sleep in her room alone at any time. What this means is that Lynley or I have to be with her in her room at all times. The other piece of good news is that I am pretty sure she has no hearing loss. It is either that or she has developed a sixth sense of parental radar. From the time she falls asleep at night until the time she wakes up in the morning if one of us is not present she will wake up and scream for us to come and lie in the bed near her crib. She will also routinely wake up to check to see if we are there. About every hour or so she will call out "Mommy" or "Daddy" and if one of us is not there in the room she will enter into a fit of crying. In the past we have dealt with this problem after each of our hospital stays and it was actually very simple. Ooops!! I am not in the room. I will have to get back to this later......
4:20 AM 1/7/2003
I DIDN'T GET TO FINISH BEING FRUSTRATED
The good news that I did not get the chance to say was that Sydney's last night of nutrition by IV was Monday night. We are hoping that by stopping the IV's her hunger will come back and she will start to sustain herself. The great news about this is that we can now actually try and curb the sleeping issues. In the past it had been relatively simple to get her back into the habit of sleeping alone when we got back from the hospital. We would simply kiss her good night and let her cry herself to sleep. This crying never lasted more than about ten minutes at its worst. The problem this time is that she was hooked to her IV pole. She would get so mad at the fact that we were not in the room that she would literally flip-flop around the crib. This behavior put her in jeopardy of pulling her lines out so we would stay with her to keep her calmed down. But now, today, we no longer have an IV pole and we can get back to parenting. I am happy to say that Lynley and I both slept comfortably in our own bed until about 3:30AM this morning before we heard Sydney crying for one of us to come. I slipped out of bed and went to check on her. Her diaper was dry but it was a little cold in her room so I tucked her in snuggly, kissed her good night and went back to our room. There were several cries but within about five minutes she was once again fast asleep. Our method seems to be working once again. It is so nice to be free from the pole. Now it becomes a race to keep her eating and drinking so that the dreaded pole will not have to come back.
Sydney did not receive any transfusions on Monday. Although she is about a quart low she seems to be sustaining herself. I did not know this before but at this point after transplant the transfusion thresholds are lowered for these kids. The reasoning for this is to reduce the transfusion related risks for the little fighters. As parents we forget that with each transfusion there are increased risks of rejection. I know that Sydney has had so many transfusions that I have become really cavalier about it. It has become second nature and does not seem as scary or foreign as it once did. I remember biting my nails for the first 15 minutes of each transfusion waiting for some sign of reaction. Regardless, although Sydney is currently maintaining platelet counts between 15,000 and 25,000 she will not be transfused unless she falls to around 10,000. Her hemoglobin is also on the low side at around 7.7 and it is quite possible that she will be transfused on Thursday but, quite frankly, I have given up on trying to predict when and if we will get a transfusion. I think the doctors just change the rules to keep us parents on our toes. How I wish I had gone to medical school.
Emotionally, Sydney is improving in leaps and bounds. Her tantrums are fewer and far between and what I would expect of a two and a half year old. She is loving and caring and, at times, even considerate. Her vocabulary continues to improve and we are hearing new words and phrases everyday. I look at her with awe. After everything that she has been through she continues to astound. I used to always say that these little warriors were resilient but I do not think that word is strong enough anymore. Just think about it. If you walked a moment in her shoes how would you feel? What would you think about life? Can you believe this little turkey has been fighting this monster for almost 8 months, almost a third of her life and, yet, she is as innocent, pure, and happy as she was on day one. I am amazed and she continues to inspire me. What an incredible purpose to have.
4:47 AM 1/08/04
LITTLE SNAFUS
Yesterday was a strange day for Sydney. She has developed a rash on the front side just under her diaper line. To me it looks like about 30 little flea bites. It is contained in that one area and it is not providing her with any discomfort. It has both the doctors and us baffled at this time. It makes no sense that it could be bug bites of any sort. It could be an allergic reaction to something but the location is strange. We are using the same diapers and the same diaper cream. It fact it is located on the bottom of her abdomen and it is not in the area where diaper cream would be applied. It could be shingles (a somewhat common occurrence in post-transplant kids) but at this time it really does not look like it. For the time being we have been sent home and told to put 1% hydrocortisone cream on it. We did have a surprise visit to the clinic yesterday afternoon due to this and other reasons. Yesterday, Sydney was lethargic. She spent most of the morning lying on the couch. At noon she threw up her lunch and Lynley and I were becoming worried. She had no temperature and appeared normal, well a quart low on hemoglobin, but normal. It was decided that we would go into the clinic to have her checked out even though her appointment was today. As soon as we arrived she was isolated into a room. They do this to protect the other kids when someone presents with a rash of some sort. All of her preliminary tests came back fairly normal although she had dropped nearly two pounds in just two days. She does not appear dehydrated but it is clear that it could be an issue. Her blood results came back to show that both her white cells and platelets have continued to climb higher but that her hemoglobin was only 7.0, well below normal. It was decided that she would get a blood transfusion early this morning and fluids overnight. Sydney perked up over the evening and seemed to sleep comfortably throughout the night although Lynley and I were up several times fighting with the IV pump. I have decided that these pumps are evil and were put on this earth to wake up parents and annoy them. Luckily, Sydney sleeps right through the wretched little beeps. These pumps are perhaps, the beepy-est we have ever had. I imagine that Sydney will remain on fluids for the next few nights and I know the blood will help out tremendously. We are still at a dead end with the rash but we are not terribly concerned at this point. We are off for another fun-filled day at the clinic.
At times I feel so petty writing in my diary. I can't seem to coax the words out. In one sense I am so completely thankful for how well Sydney has faired throughout this journey and for the wealth of support that we have had throughout our battle. But in another sense I feel guilty. I know I shouldn't be but, never the less, I do. I have developed so many new friends since this nightmare began and I find it difficult to talk about many of Sydney's issues. Why? It is because so many of the families that I have become so close to out there in the world of neuroblastoma are having real problems. Although Sydney's battle is far from over, currently it does not feel like we are in the daily life or death grind of saving our child's life. I know it was two days ago that we stopped feeding her through IV and I know we spent yesterday in the clinic and I know we still have well over six months of chemo, radiation, and monoclonal antibodies to go. Perhaps, I have been tempered by experience. Perhaps, I can see light at the end of the tunnel. Perhaps, I have a false sense of security because of the strength that I gain through Sydney. But today, right now, Sydney does not seem to be fighting for her life, but rather, just experiencing it. It feels unnatural. Right now, there are hundreds, thousands of parents sitting in hospital rooms wondering if their child will make it through the night, the next day, or the next week and I sit here wondering how long Sydney will cry before she goes to sleep at night or if she is behaving correctly. I get the benefit of hugging her and cuddling her, laughing and playing with her - without imminent fear and it feels strange and almost unfair to all of the others out there.
I haven't spoken about it much as I have been consumed with our daily lives but, did you know that out of the 70 or so parents that are participating in "Lunch for Life" (and yes it lives on - What did you do for lunch today?) about 6 of them have lost their children to this monster since it began in October, even more have had children who have relapsed. And yet, here I sit talking about normal child rearing issues. I still study neuroblastoma everyday. I still think about it everyday. I still relive it everyday. But, yet again, I talk about parenting. Have I forgotten? No. But there must be more. I have a right to be thankful for the gift I have been given but there is still a larger battle out there. There are thousands of kids out there - right now- fighting for their lives. It is time for me to get back on the band wagon. It is time to make a difference for Sydney, for Roxie, for Brandon, for John, for Nick, for Carl, for Michaela, for Anthony, for Creighton, for Paul, for Payton, for Lance, for Justin, for Vinnie, for Jamie, for Jessica, for Joshua, for Jaret, for Jordan, for Carolyn, for Patrick, for Nicholas, for Savannah, for Courtney, for Kelly, for Kaitlyn, for Elizabeth, for Ryan, for Jackson, for Matthew, for Christopher, for Nathan, for Brady, for Whitney, for Sophia, for Shane, for Grace, for Nicklaus, for Paige, for Ashley, for Lorelei, for Christa, for Madison, for Josh, for Lina, for Cassandra, for Kaitlin, for Danny Boy, for Daniel, for Lauren, for Kate, for Jay, for Harrison, for Ryan, for Spencer, for Trevor, for Gabriella, for Toireasa, and for all the other real kids who are out there fighting or who have fought this monster. There is still much to do. This list kind of makes "parenting issues" seem less than important doesn't it? I have a purpose but I must practice what I preach.
I THOUGHT WE WERE BUSY ALREADY
6:00 AM 1/9/03
Yesterday morning was spent in the clinic. It went fairly smoothly although it did include some tag team parenting. Lynley also had a doctors appointment to have some routine tests with Rice. Sydney's blood transfusion went well and as usual she enjoyed spending time in the playroom. She even got to participate in a sand art activity. By the end of the five hour stretch, however, she was ready to get home to sleep and was keeping everybody busy trying to keep her happy. They loaded up a Winnie the Pooh tape on the clinic televisions to keep her at bay. Luckily, shortly thereafter, her fill up was complete and we were once again on our way home from the clinic. Sydney's appetite has come back quickly over the last day or two. She is constantly hungry. I think that her stomach has shrunken. She eats extremely small portions but continues to eat much of the day. We are also supplementing her with nightly fluids to try and keep her fully hydrated. Currently we are giving her noodles a drink of about 500ml per night.
We also found out that the upcoming weeks are going to start becoming busy again. Hold on, wait, I thought we were busy. I am pretty sure both Lynley, Sydney, and I are but, none the less, there is much more to come in the next few weeks. Next week Sydney will be reevaluated. This means we will have several full days of MIBG scans, CT scans, bone marrow biopsies, EKGs, ECCOs, hearing tests, etc. This round of testing will quickly be followed by ten days of radiation and our official randomization into or out of the monoclonal antibody trial. The monoclonal antibody trial will mean another six months of hospitalization. It will be fairly similar to the time we spent there during our rounds of high dose induction chemo. If not, we will receive 6 months of oral chemo at home. If we are not randomized into the antibody trial it will mean it is time for some tough decisions. One of them being a trip to New York to receive a version of the antibodies that is offered at Sloan Kettering. That trial would include at least four months of treatment. That would mean that Sydney and I would have to travel to New York once a month for approximately a week or two at a shot. All of this while Lynley is giving birth to and caring for "Baby Rice." All in all, they are not great options but, it is what we must do. We have only got one first chance at keeping this monster from coming back and these are the best treatments available. I am going to try to not worry about this for a week or so. I imagine I will have plenty of time to think about it then. This certainly is a roller coaster ride isn't it? Thankfully, I am right beside my purpose and I will gladly do what is needed.
7:00AM 1/11/04
SOMETHIN' TO EAT
Hurry, buy stock now in Campbell's soup. Sydney, alone, could very well sustain the company from her consumption alone. Two days ago something snapped inside Sydney's brain that told her it was time to eat in earnest. She hasn't stopped. Well, that isn't entirely true, she does have to sleep, but, when she is awake, she is a nonstop eating machine. Sydney generally wakes up in the morning, looks lovingly into our eyes as we come in to give her kisses, change her diaper, and pick her up to bring her into our room. That, however, is the last moment of the day in which she is not eating. By the time we get to our bed to cuddle and allow her to wake up a little it has already started. It starts with the demand. "Momma, Daddy, go downstairs, lil' bit. Somethin' to eat!!!" In Sydnian this directly translates to: "Ooh sweet Mother and Father, please take me downstairs where I can be closer to the food." The "lil' bit" is her effort to convince us that it is somehow not that big of a deal to go downstairs as long as we do it just a little bit. After all, she is surely just going to have a small snack. Once we as parents break the barrier from our second story onto the floor level of our house and her little toesies hit the floor it has already began. In fact as I carry her downstairs her legs start running in mid air. It is much like the Bug's Bunny cartoons I grew up with. As I set her down there is a small skid and then off to the kitchen she goes. The 24 hour buffet has, once again, begun. At this point it is race to make the eggs, bacon, sausage and/or cereal before she has filled her arms with all of the things that she would like to eat which always include a can of chicken noodle soup, a bag of cheetos, a bag of marshmallows, a can of Easy cheese, and a popsicle. If we have been efficient as parental chefs we have begun to prepare the breakfast foods that we have chosen for her to eat by the time she starts to beckon "Momma, Daddy, chicken noodle soup, pease!!" While the food is cooking and after much arguing trying to get her to eat something other than the limited foods found on Sydney's food pyramid we egregiously give in and prepare the soup for her. Within minutes we walk back past the stairs and into the den where her table is waiting with her gourmet spread of soup and junk food. Lynley or I will then go to finish cooking the "real" breakfast foods so we can eat and to try to sneak them into the buffet that sits in front of her. Sydney will sit and eat for about an hour which gets us to 8:00 AM at best. Upon declaring an end to her food fest she will stand up walk around the stairs and into the bathroom to wash her hands. This is our opportunity to start carrying everything back to the kitchen to be cleaned up. After performing the washing function she will continue the circle around the stairway and make it back into the kitchen to help clean her plates. You would think that after all of this morning drama we have reached our first break. The break lasts from the time that we lift her off of the counter where we were washing dishes to the time that her already running legs hit the floor. We have now completed the Sydney "Circle of Eating" which also has the literal translation because this all happens in a circle surrounding the stairway. Unfortunately, once her feet hit the floor the words, once again, part her lips. "Momma, Daddy somethin' to eat." This "circle" of events will continue to occur on the hour until noon, at which point we will take her directly from the table to her bed to avoid any unnecessary snacking. Sydney will sleep for about an hour and a half at which the process will start once again and finally culminate at about 8:00 PM when her head hits the pillow. My purpose is hungry.
5:15 AM 1/12/2004
ANOTHER CLINIC VISIT
It is time for another trip to the clinic for Sydney. Today should be a routine visit. I am doubting that Sydney will be in need of any blood products. This will mark over two weeks of not needing a platelet transfusion. I expect that we will find her to be in good running order and the bulk of our conversations will probably revolve around our upcoming scans and radiation. Our first appointment with the doctor who will be performing Sydney's radiation treatments will be tomorrow morning. It is going to be a couple of very busy weeks for Sydney as she endures another round of tests. The good news is that she continues to love going to the clinic and the hospital. To be honest, this is her only real bout of socialization these days and it is an excellent opportunity to see other kids. I guess she feels much the same about these people as we do. They have become a part of our family. I am hoping that the only difficulty that we experience today is getting Sydney to stop eating long enough to get in the car to drive to the clinic. I figure that if we can make it there we can do just about anything. Luckily the clinic is jam packed with chicken noodle soup, crackers, and her clinic favorite, graham crackers. My purpose is still hungry.
5:15 AM 1/13/2004
Yesterday's clinic visit went pretty well. Sydney blood counts continue to rise on their own. Her platelets are now at about 38500 and her hemoglobin is at 10. Her white blood count remains low at about 2100 with her ANC at 1360 but this is still expected at this point. The good news is that she continues to improve and that her marrow is starting to play catch up. Sydney also received about a two hour infusion of IVIG which is basically an immune booster. For the most part Sydney was a happy, good little girl until the end of the infusion. I made a parenting mistake and told her we could go home at the end of the infusion. First rule of parenting, don't make promises to a two year old that you cannot keep. Unfortunately, Candy our physician's assistant was still trying to get all of our tests and scans scheduled and it would be about another hour before we could go home. Now,Sydney's head did not make a full rotation and shoot off but it was pretty close. She was mad, angry, tired, and ready to go home. The last hour was full of a lot of crying and with that my stress level was starting to increase. But, in the end, we both made it without any decapitations. It truly is amazing, as soon as her tushy hit the car seat ,she was back to being the angel I have come to know and love. There must be another parenting lesson in here somewhere.
Today we have a 10:00 AM appointment with our doctor in radiation. We will get all of the preliminary information and as usual I am sure there will be a plethora of medical disclosures to read through. I am somewhat excited to get the process started. It has been quite a while since Sydney has any kind of treatment (45 days) and I am ready to get back on the horse again. I do not want to give this monster one second to breathe. The rest of this week will be spent at the hospital but all of it will be outpatient. As I mentioned a couple of days ago there are a ton of scans to complete. Tomorrow we do a run through with radiation. She will be anesthetized and prepped for several scans and measurements. On Thursday she will have her EKG, ECCO, Bone Scan, and CT Scan. That, I am imagining will be a day from hell. With the scheduling as it stands she cannot have anything by mouth after 8:30 AM. She will not be able to have a nap and it is likely that we will not be home until late afternoon. Regardless, once this has been completed we will be another day closer to the end of testing and hopefully just a day from good news that she continues to have no evidence of disease. Well I am off to work again. There is much to be done this week and I haven't taken a breath yet. Luckily, my purpose gives me strength, hope, and endurance. I wish the same for her
RADIATION PRACTICE
1/14/03 5:40AM
Today we take Sydney in for a "run through" of radiation. They will perform several non diagnostic CT scans and prepare all of the necessary preliminary work to get her ready for radiation. Unfortunately, there simply is not enough time to go into detail right now as we will have to leave shortly but I will update as soon as I can.
RADIATION "SIMULATION"
5:00 AM 1/15/2004
Well, first off, they really don't appreciate it if you call it radiation "practice." The official term is radiation simulation. We arrived early in the morning at the hospital. Sydney had been denied food or liquids although we had anticipated that she would not necessarily have to go under anesthesia for the procedure. After going through patient registration and walking upstairs we found ourselves at the all too familiar outpatient surgery waiting area. Although Sydney was still begging for anything to drink she was in fairly good spirits and was behaving fairly well, all things considered. After a short wait we were taken back to meet with the anesthetist and our team of nurses. Although we had not planned on it, it was decided that Sydney would be put under anesthesia. The theory is that this would be an excellent opportunity to find out what works and what does not work for Sydney as far as anesthesia goes. It made since to us because Sydney has always had such strange reactions to medications. As we waited in this room, Sydney was becoming more and more antsy. She was hungry, thirsty, and now agitated by the multitudes of people taking her vital signs and fussing with her. After about thirty minutes we loaded her up on the gurney and took her for her ride over the street and under the building - to radiation we go. Radiation is located in another hospital which is across the street from Cook Children's Medical Center. They do not focus solely on pediatric patients but I was certainly impressed by there patience. I am continually amazed by what these people do and their attitude in doing it. It is like I have seen no where else. Upon entering the CT scanning area Sydney was placed upon a large, clear, flat bean bag bed on top of the CT scanner. She lied quietly and still as they prepared her body for the correct positioning. I was very impressed with her demeanor. At this point it was decided to anesthetize her and this is when the problems arose. First, they gave her a dose of Nembutal (I believe that was the drug) and within minutes she was flip flopping on her bean bag like a fish out of water. It was not violent but more like she just could not get comfortable. Every time we thought she had finally gone to sleep she would flip over to try and sleep on her side or her tummy. Within a few minutes another dose of Nembutal was given to her. Although this dose calmed her down a bit she continued to flip flop. It was clear that something else would be needed to keep her still. After giving her a dose of Versed she was asleep within minutes and the preliminary scans were under way. The scans did not last long and in the mean time one of our nurses was diligently on the phone trying to get anyone who was going to be administering our future scans and tests to try and fit her in that morning while she was under anesthesia. Thanks to hard work we got her ECCO and EKG scheduled immediately after the "simulation". As she came out of the scan she was still sleeping comfortably and the technicians went to work with their markers and stickers. Within minutes Sydney was covered in green ink. The lines are used in the future to line Sydney's body up so it is in exactly the same position everyday that she receives radiation. Next, they vacuumed all of the air out of the bean bag that Sydney was lying in. It created a mold of her exact sleeping position. It was actually pretty neat. I was thinking that I could use one of those at home. We thanked every one and made our way back through the tunnel, over the bridge, and back to Cook's. We made a short stop to have her ECCO and EKG performed. Near the end of these tests it appeared that Sydney was starting to awaken so we quickly scuttled her back to the surgery recovery area. Unfortunately, Sydney was nowhere close to waking up and every time we tried she became rather violent. It took about two hours to get her to the point where she was alert enough to leave and in that time she had let out enough scream to power Monstropolus for a month (Monster's Inc. reference). It was embarrassing and although we knew it was the medication that was affecting her we had no idea of how to bring her out of her slumber peacefully. In the future, I think we will just let her sleep it off no matter how long it takes. It was just to dangerous to try and wake her up as we were instructed. She would flop violently across the gurney banging her arms, legs, head, etc. on the sides. It was not fun but something I am sure we will learn to deal with. Sydney remained groggy most of the afternoon and was not sure footed until well after 5:00PM. She would not sleep, so that meant that I had to carry her throughout the house and prop her up whenever she sat. Unfortunately, she still felt like she was Superwoman and it became a battle to restrict her movements. Every time I tried to give her a little leeway she would fall over. I know this had to be aggravating for her. She spent most of the afternoon eating. I say most because she had to stop at about 3:30PM so that I could change her diaper. In that afternoon she had 2 8oz. cups of juice, an 8 cup of water, an entire can of chicken noodle soup, 2 tubs of yogurt, a can of pudding, some popcorn, some crackers, 1/4 can of easy cheese, two sausage balls, a couple of handfuls of marshmallows and a hot dog. Ironically enough, at 6:00PM she also ate a complete dinner and a full cup of milk. What a day.
This morning we will be leaving at 7:45 AM to go back to the clinic. Again she will be without food or drink until well after noon. We will be performing a bone scan and another CT scan that are more diagnostic in nature this afternoon. I imagine that we will not be home until after 5:00PM. That is today, and tomorrow morning we will begin radiation. I would like to feel sorry for myself but all I can think about is poor little Sydney having to endure all of this. She is two years old and I keep thinking - when will it be normal for her again? When will she be able to just wake up and play again in the morning? Unfortunately, with radiation starting, she will be anesthetized every morning for the next two weeks. Like everything else, for her it is just not fair. Regardless, I will remember to be strong by her side and remind her that no matter what happens her Mommy and Daddy love her. My purpose is back in fifth gear.
RADIATION DAY 1
6:00AM 1/16/03
Surprisingly, yesterday went fairly well for all of us. Sydney was in a great mood and endured a very long day with poise and a sense of humor. Today is the first day of radiation which requires our presence at the hospital in about one hour so there is little time to type. It is day 1 of the 12 days of radiation (not nearly as much fun as its more well known counterpart - the 12 days of Christmas). I have a purpose.
LIVE FROM RECOVERY (actually delayed due to no internet access)
11:00 AM 1/16/2003
Well, here I set next to my sleeping angel who is continuing to slumber due to her sedation. I say "sleeping angel" but it will be interesting to see if she wakes up in the same fashion. Unfortunately, the Versed did not do the trick and another dose of Nembutal was needed. This dose was slightly smaller but enough to keep her sleeping for hours. Once it hit her system she entered into immediate restlessness and began her anticipated flip-flopping. She went to sleep much more easily but it was still uncomfortable for both her and those of us watching. The actual radiation process occurred very quickly. The door would shut. The nurses would glance at the monitors and then the door would open and the nurses would go back in to take pictures and check her positioning. All in all, it was a relatively simple process. After about fifteen minutes we were back through the tunnel and over the bridge - to recovery we were to go. Once we arrived in recovery we were greeted by an audiologist who was there to check Sydney's hearing. Here comes the unfortunate part.
Sydney has had loss of the high pitches in her left ear. Her right ear seems to be hearing normally. I honestly do not know enough about the mechanics of the ear but I have difficulty understanding why she would have more hearing loss in one ear than the other from the platinum drugs. So, based on absolutely no sound medical theories, I have decided that when she was receiving her last dose of carboplatin she must have been sleeping on her left side allowing the drugs to accumulate in the ear. Again, this is not reality and not medically sound, but, nevertheless, an explanation which works for me. So, until a discover how to boil 48 hours into a 24 hour day to find the time to research this is what I will believe. No matter what and don't try to convince me otherwise!! What does all of this mean long term. Her hearing could continue to get worse. Her hearing could get better. Her hearing could stay the same and any of these options could occur over the next several years. After all, it is just the high pitches and just in her left ear. So right now, I think we should consider ourselves lucky and just pray that neither ear continues to deteriorate. Right now, there isn't really any need for a hearing aid. At her young age she is likely to never notice the difference. Should she notice the difference a hearing aid could always be a consideration but so could a new experimental procedure of having her right ear transplanted into the center of her forehead to keep her from having a preference of which side she chooses to hear from. I know - sick humor - but we all need to deal with things in our own way. For the time being I am "hear" by her side and glad to be there. I love her with all of my heart and am totally prepared to shout it from the rooftops if need be. My purpose is not hearing dependant.
1/19/2004 5:00 AM
DAY 2 RADIATION
Sydney woke from anesthesia very calmly. In fact, it was outright atypical of her. She looked across the gurney straight into my eyes from under the blanket and said "Hi Daddy, What Doing?" She had a popsicle and a cup of apple juice and the next thing we knew we were out the door. Sydney's hunger is starting to subside and is returning to normal levels. We still do not know what type of impact the daily sedation will have on her but with three days of mornings with no food or drink by mouth she seems to be relatively normal.
Sydney had a wonderful weekend. She was playful and busy. She continues to have a few rather extreme outbursts daily but, at this point, I would have to assume it was normal. It is really hard to know what exactly is and what exactly isn't normal for her. Without prior experience of raising a two and a half year old we really do not know what is expected. Everybody knows about the terrible twos and threes but how terrible is terrible really. I constantly argue in the back of my mind whether her bad behavior is because of her age or the difficult life she has had to live. I am perfectly content to blame all of her bad behavior on Neuroblastoma. It makes a great excuse for just about anything. She did not eat well today -- neuroblastoma. She did not sleep well last night -- neuroblastoma. She threw a fit because I would not follow her to the kitchen -- neuroblastoma. Or, is it? I would also like to believe that all of her behavior is a result of the fact that she is two. I would love to believe that we have given her so much love and support throughout this entire process that she has had no ill effects from her cancer. I guess I will probably never know the answer but it will remain a question. Don't get me wrong. I love the parenting game. It is perhaps the most challenging puzzle I have ever had to face -- and the most rewarding. It is a true test of my manhood, my self control, my ability to love and show love. It really is an amazing journey and one that I relish everyday. Kiddos really are like clay and we as parents get to be the artists with this every changing medium. What an honor in life. I think neuroblastoma has just made the clay harder to work with. It has given life a new texture and made the art more meaningful. God love my purpose.
I am off to another day of radiation. Perhaps a midmorning recap live from recovery will be in order.
RADIATION DAY 3
5:40 AM 1/20/2004
Could we be getting better at this? I think we are starting develop a system of getting Sydney out of bed, down to the hospital, and sedated - all before 8 AM. Unfortunately, we were unable to get her down with any less Nembutal but we are at least avoiding the rage when she wakes up. Yesterday she even woke up at about 10:30AM. It was loud in the recovery room but, nevertheless, she woke up pleasantly. She quickly drank some juice and within minutes we were on our way across the bridge to the clinic for a check up. Sydney's counts are all on the rise and she seems to be doing very well, medically speaking. Over the weekend she developed some small bumps on her neck. Honestly, having never seen the chicken pox I am sure they look identical to them. Even Dr. Howery has been suspicious. With Sydney's neutropenic condition it something to be worried about but we are happy to report that they are not behaving like the chicken pox. There are only five red bumps. With time they have not gotten any better or worse. They have not migrated over to other parts of the body and she continues to show no signs of fever. So, the official plan is to keep an eye on them. We also asked about the rest of Sydney's scans. We have not heard an official statement but what we have heard is that someone had viewed them and they look great. I think the reason that we have had to wait for the results is that radiation has had all of our historical scans in planning for radiation so, unfortunately, the radiologist has not had the older scans to compare them to. We are hoping to hear more on Thursday. I know this has been a jumble of random thoughts but, once again, today is a busy day. We are in rush. This morning's radiation treatment will be followed by our nuclear med injection for the upcoming MIBG scan on Thursday. I am off to serve my purpose.
RADIATION DAY 4
5:30 AM 1/21/2004
I think we are finally starting to get the sedation down. Yesterday Sydney, received a smaller dose of Nembutal and fell asleep relatively quietly. The benefit is that she also woke up at about 9:45 AM which left us the rest of the morning to lead somewhat normal lives. We still are not big fans of the Nembutal. In fact, we have learned in many circles it is called nemburage. Regardless of the amounts that she receives it seems to affect her for most of the remainder of the day. Early afternoon is the worst for her and it appears that her tolerance for anything that comes her way is nill. She becomes argumentative and just not particularly happy. In the late afternoon she returns to herself only to have this entire scene repeated for her the next morning. All in all, this is really small potatoes compared to what Sydney has been through, but I just wish it was better for her sake. Don't get me wrong. She has tolerated this journey with flying colors. In many ways, she has done far better than I could have ever imagined for myself or others but I just wish she did not have to endure this life style. She adjusts very quickly and at this point in time she understands that she can not have any food or water in the mornings because she has to got to radiation or the sleepy tunnel (In Sydnyan). I am constantly amazed at her ability to cope and to accept what life has thrown in front of her. Yes, she is not aware of the seriousness of her condition and I am so thankful for that, but she has accepted everyday as her own and continues to live it to the fullest. How many of us can say that? She just accepts the hand that has been dealt her. In that way she is far more wise than I. It is amazing what we learn from these little gems. In some ways it can be easy being a parent to a child with cancer. I know that sounds strange. But you become so inspired by the courage, tenacity, love, patience, and strength that you sometimes forget to be afraid. You forget that this monster is out there. Sydney is very good at giving me that feeling. God love her. Thank you for my purpose.
RADIATION DAY 5
5:20 AM 1/22/2004
Today will be action packed but, hopefully, it will all happen very quickly this morning. Sydney is scheduled for her fifth day of radiation at 8:00AM, an MIBG scan at 8:15AM and a bilateral bone marrow aspirate at 8:45. These are the tests that really make me anxious for the results. I know I have mentioned it before but although the MIBG test is not completely accurate it is perhaps the best thing that we have to detect signs of neuroblastoma. The bone marrow aspirate is also a fairly reliable indicator for the presence of disease. The problem with bone marrow aspirates is that it is kind of like "luck of the draw." I had always thought of bone marrow as a viscous solution that spread its contents evenly throughout the marrow but have come to understand that it is not that way. Depending on where you take the sample from in the bone marrow you could hit a pocket of disease were signs of neuroblastoma are present or just miss it, for that reason false negatives can be common. Unfortunately, there just isn't any foolproof method of knowing for sure whether the disease is there or not. Regardless, we are hoping for cleans scans and clean marrow. I am hoping that we will have some kind of indication today but I fear that is unlikely. We probably won't know anything until tomorrow and the official results will not be back until next week. I also think that we may be coming up on Sydney's randomization in to or out of the monoclonal antibody trial. I know that it is partially dependant on clean scans but I am also anxious to hear what our next plan of attack will be. I think one of the hardest things for a parent is the waiting. There are still many unknowns but they do not feel as devastating as they once did at the beginning of this journey. I remember writing about the unknowns everyday in my diary and I can almost taste the fear and if I concentrate hard enough I can feel it in the back of my throat. Thankfully, although most of the feelings still exist, it is manageable and has become something that we have learned to live with.
Sydney is doing well with radiation so far. We have not seen hide nor hair of many of the expected side effects. That is fairly typical for many of these kiddos but I imagine that we will start to see them over the next few days. Many start to become dehydrated in the last five days of radiation due to nausea and diarrhea. For Sydney's sake I just assume we skip those side effects as well. I am off to another busy day. I have my purpose beside me and I am praying for another uneventful day followed by less eventful test results.
RADIATION DAY 6
6:30 AM 1/23/2004
Yesterday was absolutely no fun. Thankfully Sydney will not have a recollection of it. Unfortunately there is not enough time to go into it so, today will be fast facts. The first glance of the bone marrow aspirates is that they are all clear. We will receive the official results next week. We still have not heard on the MIBG scans. Additionally, because of a loophole regarding the end of radiation we will not know our randomization until February 12th. Ordinarily we would know right now and we are working to find out earlier. I am off to another busy day with my purpose.
9:20 AM 1/23/2004
Once again, I get the privilege of writing live from the recovery room. Sydney fell asleep much better today which is a very nice change from yesterday. We have learned the lesson that when it comes to sedation and Sydney the policy of less is more certainly applies. Yesterday Sydney was needing to be sedated for a longer period of time in order to complete the MIBG scan and the bone marrow aspirate and biopsy. For this reason, she was sedated with a larger dose of Nembutal. Her reaction to this larger dose was not comfortable sleep but rather another round of flip flopping on the bed. By the time that she had fallen asleep she had received over twice her normal dose of Nembutal and another dose of Versed. It took quite a while to get Sydney to go down and the next thing we knew we were already 30 minutes behind schedule. Radiation went off without a hitch and soon we wheeled her back over to Cook's for her MIBG scan. Near the end of the 30 minute scan it was clear that she was starting to wake. Unfortunately, we still had the bilateral bone marrow aspirate and biopsy to go. Regardless of our attempts to sedate her again with another dose of Nembutal (she was now at three times her normal dosing) she would not go back to sleep. Guess what?!? Sydney got to have her bone marrow biopsy and aspirate awake. Now, she did receive some Fentanyl for the pain and a local anesthetic so pain was not a major issue. The fact that she was completely out of her mind on NembuRAGE was. Everyone knew that it was the drugs and we all knew she would have no recollection of the experience. So, we summoned up all of our strength to restrain Sydney as Dr. Eames performed the procedure. I say we, but it was Carla, our nurse, who did most of the holding. She knew what she was doing. There were many times in the past when it took 3 or 4 adults to restrain Sydney but Carla was able to lock her into position efficiently and effectively. Lynley and I stood back in awe. The neat part of this chaotic episode was that we got to view the the bone marrow aspirate and biopsy and our "Super Doctor" in action. To me, it looked like she used a hollow skinny cork screw both in appearance and function. Dr. Eames would screw the apparatus into the back of her hips, remove a sleeve that sat inside the corkscrew (this contained a segment of the bone and marrow), and then pulled out some additional marrow into a syringe which was then connected to the corkscrew. The process went fairly quickly but it was after the procedure that the game began. Sydney was violently thrashing around the bed, clearly out of her mind. We would take turns restraining her trying to get her to go back to sleep. After about thirty minutes we once again achieved sleep. She slept until about 11:00 AM. After that it was once a normal day at the Dungan household. This process seems much easier when you focus on your purpose.
7:00 AM 1/25/2004
ANOTHER DAY IN THE LIFE
After spending everyday of the last two weeks in the hospital we woke up Saturday morning feeling that something was missing in our lives. I guess that is why we ended up back in the hospital. This time, however, it was a different hospital. Perhaps, a little background information is necessary. Sydney's Friday radiation treatment went fine. She woke up about 10:00 AM and everything went fine for her the rest of the day. Unfortunately, for Lynley it was not going as well. At about 8:00 PM she had had enough. Apparantly, "Rice" was causing some strange pains. Lynley described the pain as being a combination of heartburn and strange pains at the top of her abdomen. Although these pains seemed to come every five minutes or so they did not feel like contractions. She called her OBGYN and was told to drink 8 oz of water every ten minutes for an hour and if that did not fix the issue she was to go to the emergency room. The water seemed to do the trick and she decided that she could go to sleep comfortably. When she woke up the pain had once again returned and, after a call to Dr. Quist, a trip to the labor and delivery department at All Saints Hospital. We quickly dressed and got Sydney ready fpr the trip. We expected that we would show up receive a quick ultrasound and then be sent home. What we did not expect was to find that Lynley's pains were indeed contractions. "Rice," the little bugger, was trying to come out even though we was undercooked. This was once again an indication that he was indeed my soon. I am always early. My dad taught me the mantra that - Showing up fifteen minutes early is showing up on time, showing up on time is showing up late and showing up late is stupid. It is clear that Rice has already learned this fact from his Daddy. I knew he would be a clever one. Unfortunately this is not what we want right now and the game began. We had to convince the little twerp to stay in his Mommy's tummy. After several hours of monitoring, drugs, and fluids we finally seemed to get things under control. At about 2:00 PM Lynley was discharged. She was intructed to have strict bed rest for the forseeabke future. She was intructed to drink lots of water and lifting anything outside of a glass of water was off limits. I offered to duct tape her legs shut but they did not think that would necessarily help at this point.
Oooops! Time to go back to the hospital. Excuse the spelling there isn't enough time to reread. By the way, It is Lynley going to the hospital. No crisis but we have to keep the baby from coming out yet.!!
THE SAGA CONTINUES
Well, we are back home and I am happy to say that we are still only three. After spending another 4 or 5 hours at All Saint's hospital Lynley was sent home on bed rest and told to keep her legs shut. While at the hospital she once again received a sonogram which shows a healthy, hairy, baby boy (In the radiologists words - clearly a baby boy. and once again, paternity is in question although I am comforted by his punctuality) Lynley received a shot in her tushy to aid "Rice" in developing his lungs just in case of an early arrival but they feel fairly confident that he will stay put for a while longer. During Lynley's hospital stays Sydney was a little trooper. She was amazed that Mommy was getting the same treatments as she does on an almost daily basis. It was really cute to watch her. When Lynley would get an "arm hug" (blood pressure cuff) Sydney would walk over to her bed side and tell her "Mommy be okay - no owies." The only thing that made her a little uncomfortable is when she and I had to leave Mommy during the Sonogram. It was actually time for Sydney's nap but on the way home Sydney told me "Miss Mommy very much - Mommy okay?" and I would reassure her. She was obviously more comfortable in the hospital environment than being away from Mommy.
Over the past two days I have had a dose of full time single parenting. It really makes me take notice of how good of a team Lynley and I are, especially when she can't be there. I have no understanding how single parents make this journey and all I can say is that I am in awe. I guess it is something that you get used to but for the time being I am just happy that this is a temporary condition. Lynley and I really do compliment each other and I realize how much she does when she is not around.
This morning we are off to radiation day 7 and then we will follow that up with another visit to Lynley's hospital. It should make for a busy day. I am off with a purpose - actually three.
RADIATION DAY 8
1/27/2004 5:15 AM
Well, we made it through another day. If you just keep putting one foot in front of the other you can keep making progress. Just as we were getting used to the morning routine of going to the hospital for Sydney's radiation the game seems to be changing on us. As the days go on it seems to get easier and easier and then just when you start to think that it isn't so bad something jumps up to remind you that this is not a game. We are starting to see the effects of radiation on Sydney. She is complaining of belly owies on a regular basis and her stools have slowly morphed into to diarrhea. Her appetite is starting to wane and getting her to drink fluids is becoming a chore. Don't get me wrong, she is still a pillar of stamina and a source of inspiration but I can see that the radiation is starting to take its toll. She has come to expect that every morning she will wake up. She knows that she will have to forego her favorite morning cup of warm milk. She looks forward to going to the hospital, seeing her nurses and anticipates the gurney ride over the bridge and through the tunnel. She really likes the sleepy tunnel (this is the code name for the radiation procedure in Sydnyan.) I am continually amazed at how happily she faces every opportunity. I don't know whether I am seeing the spirit of a child, a genetic predisposition, or a learned behavior but I am so incredibly inspired by her attitude and her willingness to live happily, regardless of what gets in her way.
So far we have received great results from last weeks scans. Her MIBG was negative which means that she continues to show no evidence of disease. The only test left remains her bone marrow biopsy and at this moment everything points to it being clear as well. This is absolutely fabulous news but in the midst of everything else going on in our daily lives we have forgotten to celebrate. I keep putting one foot in front of the other and I keep pushing forward but perhaps it is time to step back and smell the roses. I need to enjoy these milestones because it is not going to get any easier from here. We still have another five days of radiation. We will have a week of rest before the next part of our journey begins but I am sure that the time will be consumed by catching up with all of the life that we have missed over the last week and a half. As I reread my words it all sounds rather depressing and that is not my intention, perhaps I am just tired from a busy week and weekend. I am happy and I am comforted with my wife and my child by my side, but a breath would be nice - for all of us. I am the last one who should complain.
Lynley continues to have contractions but it does not seem to be alarming to anyone. They are not intensifying and her body does not seem to be progressing towards child birth. It is something we will watch closely in the future but for right now we think it is somewhat under control. Our little weekend stay at the labor and delivery center made us realize how close we are to the next stage of our lives. We are still yet to finish decorating the baby's new room, buy clothes (outside of a few onesies), get a new crib, set up a changing table, or name the little bugger. "Rice" appears to be a fan favorite but Lynley still has not been convinced that a child should be named after a food product. She fears that he will be taunted. I have assured her that since he is of my stock that no one would dare make fun of him for he will be buff, with big manly shoulders and muscles, but somehow she is not convinced that my spindly frame could conceive such a monster. Regardless, we still haven't decided and we continue to banter names back and forth but secretly I am still pulling for "Rice" Dungan - junior super hero. I am off to another day full of purp-i (the correct spelling for multiple purposes.)
RADIATION DAY 9
1/28/2004 6:20 AM
Yesterday was a better day. Unfortunately, last night was sleepless at the Dungan household. I really do not know why but everyone had a very hard night of rest. For that reason, we are late moving this morning and there simply is not much time to catch up. The good news is that everyone is fine, albeit tired. Sydney had a good day of radiation. Lynley had a good day free of complications and I even got a chance to go to work. I am hoping for much the same today. Perhaps there will be more time to catch up later. My purpose is calling.
RADIATION DAY 10
Hey, we are finally in double digits and we only have three more days of this treatment cycle. This visit will be followed by a clinic appointment and hopefully we will get the final opinion on all of the test results. Sydney is doing well. Of all of the therapies that she has endured I think that this one has been the easiest on her. She has mild diarrhea and she continues to complain of pain in her abdomen but she seems to be riding the rollercoaster fairly comfortably. We are still trying to decide exactly what the belly "owies" are. Sometimes it seems like it is just a call for attention but at others it seems like it could be the type of pain associated with an empty stomach or the passing of gas. I am feeling pretty cavalier about it because the intensity just isn't there. I know that sounds strange but after witnessing some of the pains that she has had associated with prior treatments this just doesn't seem nearly as bad. Regardless, today we will have it checked out more thoroughly at clinic. There seems to be another side effect from the radiation or, more likely, from the sedation. Simply put, Sydney never shuts up. I have started calling her talky talkerson because when she is not asleep she is talking. It is as if she saves up everything she has to say while she is sedated. The moment she wakes up she will not stop talking until the next time she goes to sleep. She talks about everything -- and nothing. She sings songs. She talks to her socks. Anything with or without an ear that is within her eyesight she will talk to or about. It is perhaps one of the cutest things I have ever seen. Yesterday morning when she woke up from our less than restful night of sleep we could hear Sydney over the monitors in her room. We would hear the creaking of the bed, rustling of sheets and then, as it progressed, we heard a strange clicking sound, the rustling of paper, and then pure jabber. Lynley and I waited before we entered her room just to hear what would happen. Finally, after quite a while of waiting, the curiosity got to us. We opened the door to find Sydney sitting up in her dark bedroom with her flashlight reading books to herself. Now, you know me, I would love to declare two year old genius but she rarely reads it correctly. The neat thing that she does though is describe what is happening in the book. She seems to tell her own stories. Regardless of the actual plot line somehow Mommy, Daddy, and Sydney always end up in the story. It is adorable to watch and even funnier to listen too. It makes everything around us seem somewhat normal. Once, again, I feel like I am learning about life from Sydney. She finds such joy in the simplest of things. She finds happiness where I had traditionally found nothing. This isn't a statement on the existence of a child with cancer but rather the innocence and curiosity of a child. It is really comforting to put on her rose colored glasses every once and a while to see the world through her eyes. It not only makes the neuroblastoma journey more palatable but it gives life flavor. My purpose has given me a refreshing view and a much better day. So I am off to face another by her side.
On another note, Lynley is doing fairly. We have not had any hospital visits on her behalf in the last few days but I can see the worry and stress in her eyes. She has never been one to take things easy and as much as I have talked about how much tougher it has been since she has been on bed rest I know it is harder on her. I haven't figured out how to bring her peace - but I will. She is doing well but I can see the worry. I hope today she finds comfort and a day of rest. Perhaps, today should be her special day. I will have to figure out what to do.
RADIATION DAY 11
5:00 AM 1/30/2004
Friday, oh how I love that today is Friday. Yesterday's radiation treatment and clinic visit went off without a hitch. Well, no hitches, but there were bumps in the road. Sydney came out of her sedation early but not with sheer terror. At about 9:00 AM as Carla and Lynley were poking her ears Sydney simply sat up and told them to stop it. It took a couple of hours for her irritability to wear off which made our clinic visit more eventful than it really needed to be. We have become used to her post Nembutal blues but it is quite a different thing when she is out in public. Regardless, with a little crying and several fits we got through our appointment. We received confirmation that all of her tests came back normal. Sydney's white blood cell counts were a little low however, so last night Sydney received a GCSF shot to help boost their growth. Although her weight is dropping ( a sign of her waning appetite) and the diarrhea continues to flow we have decided that we are close enough to the end of radiation that she can sustain herself without IV nutrition for the time being. This will be something that we watch over the weekend. If it is anything like last weekend I would expect for her appetite to return and the diarrhea to subside. We really haven't found a solution or cause to her belly "owies" but as I said yesterday they are fairly minor compared to past occurrences. I guess what we learned is that we need to stay diligent. The National Sydney Health Alert Level is yellow.
A weekend is really needed around the Dungan household. I think we have all reached the point of needing a break. I only hope that my purpii get one too.
RADIATION DAY 12
5:40 AM 2/2/2004
Yes, the final day of radiation is here. For me it is like a 3 day weekend. Not only did we get to have a quiet weekend without any trips to the hospital but we get to celebrate the fact that this is the last day of radiation. Sydney has done better than expected. She has lost weight but many of the other side effects have eluded her. Knock on wood!! She was an absolute joy all weekend. I find it very difficult to write in my diary at times like these because she is doing so well but, when she grows up and gets a chance to read my words, I want her to know what a brave and strong little girl that she was. I still hope and pray on a daily basis that this monster stays away from her for the rest of her life and, many times, I have prayed that she will have no memory of what she has endured. However, in another sense, I want her to know. At this point in life we haven't had the opportunity to give her all of the life lessons that we have wanted too. She is far to young to comprehend most of the life values that Lynley and I would like to pass on to her. Sydney has our genetics but she is who she is. How wonderful will it be for her to look back on her life in this difficult time and realize that although she had a wonderful and loving support group behind her it was her that made this journey and succeeded? Lynley and I can not walk in her shoes for her. We can be by her side to comfort and nurture her but it has been Sydney who has fought this battle alone. It is her spirit, her inner soul, that has ridden this roller coaster. Everyday she has woken up ready and willing to face the next challenge. She has faced pain, sleep deprivation, countless pokes and prods and yet she has made it through with all that is inherently Sydney. I kind of liken the experience to being tortured in a prisoner of war camp. Perhaps, I am overly dramatic, but, if you think about it, she has faced many of the same types of treatment yet, she has made it through with a smile on her face and full of love in her heart. Not only has she survived but she has taught many along the way. She has taught her mother and I values that we never previously comprehended and there are thousands of others who she has also touched. She has inspired great things to occur and given us all appreciation of the importance of family, purity of heart, and the preciousness of life. I continue to receive hundreds of email a week and there is rarely one that fails to mention what a profound impact Sydney and her story have had on them. All of these people appreciate life and they love their families a little more because of her struggle. What a legacy to have in one's life. Sydney, how can you not grow up and know that you can conquer the world? The day I started writing this diary I wanted to do it as a gift for you but what I have learned along the way is that, in reality, it is really just an account of your gifts to me. You are truly a special little girl. I love my purpose and I thank you for it.
FORGETTING TO CELEBRATE
1:25 PM 2/3/2004
It seems that whenever we reach a point in our lives when there is a break from treatment we schedule all of the things that we were unable to due during the treatment time. What ends up transpiring is that the first few days after treatment gets jam packed with monotony. This has been one of those days and this is the first time I have had the opportunity to sit down in front of my computer to type. If all goes well I will have roughly 15 minutes to complete this diatribe before Sydney will awaken. At which point, I will think about making lunch for myself. So, with that being said, everyone is doing well. Sydney continues to be the wonderfully obstinate snot we have grown to love. She is putting on weight and the only difficulty seems to be keeping her drinking fluids. She is back to eating but drinking seems to be something that requires bribery. Mommy is well and "Rice" appears to be growing as planned. An OBGYN appointment yesterday confirms his healthiness. As for me, well I am busy and too skinny so I am off to the refrigerator before the twerp beckons for me. I certainly have a purpose filled life. Tomorrow, we will address the future.
WHAT MAKES HER TICK
6:00 AM 2/4/2003
Sydney seems to be unaware of the fact that she has just finished 12 days of radiation. She is absolutely full of life and vigor. I cannot tell you how nice it is to wake up in the morning and not have to take her to the hospital. I feel like we all just gained about six hours per day of time and twelve hours of happiness. I know it may sound crazy to many but the difference in her temperament off of the Nembutal is astounding. She is less frustrated by anything that comes her way and incredibly loving. Right now, Sydney is in a place where she loves absolutely everybody. If you dawn the doors of our house she will seek you out and you will receive a hug and a giggle. Now, don't get me wrong, she is still two years old and the radiation didn't kill the ornery, stubborn, selfish cells. She is still every bit a two year old but that is really my point. She seems so incredibly normal and happy to be in her skin. I keep expected her to reach her level where her tolerance for the multitude of treatments and pokes and prods finally drives her over the edge. I keep thinking that if I were walking in her shoes I would have reached that point many times already. In fact, just watching her endure this rollercoaster I have felt that way. But not Sydney. She just keeps going. What is the difference? What is it about a child that can endure all of this horror with the strength and courage of a super hero and yet get mad because her peanut butter sandwich was cut on the diagonal instead of straight across. I really think that there is something here. There is something that I can learn from her ability to ride this road. Yes, she does not understand the implications of her diagnosis. Yes, she is not forced to make the many, many hard treatment options. Yet she faces them head on and generally with a smile on her face. What is it about these young children that gives them this ability? I don't know if it is a result of there innocence, a genetic property, or the way that she has been nurtured but it is something that I think has tremendous value and I am learning. Her attitude has certainly made mine better and she has accepted her fate as normal which has made me more accepting of the road we travel. People write email all the time to say how strong we are but I really don't see it that way. As a parent you do what you have to do. There is no choice. It is just an inherent part of being a parent. It is like I said before, you just keep putting one foot in front of the other. You don't have to like it but you just keep dredging forward. But for her it seems different. She has a choice and I know I would be complaining all the way and I think that it would certainly have an effect ( probably negative) on my view of the world and life. But, for her, no. It is not that she does not understand some of the consequences of our actions. She knows that going to the hospital is going to make her better and she knows that going to the hospital means that she will not get to play all day and will require noodles, yet every time the Dungan's dawn the walls of Cook's it is with a smile on our faces. It is Sydney that gives us that smile. Although I still am far away from finding all the answers I am continuing to learn from my little twerp in angels clothing.
There is much to come over the next few days as Lynley and I have some potentially difficult decisions regarding Sydney's treatment coming in the next few days. And then, of course, we have the official naming of "Rice" that must be figured out. For now, I am going to enjoy some normalcy and take a breath of fresh air. I am going to enjoy my purpose to the fullest for the next few days.
7:00AM 02/05/2004
Aaaaargh!! I overslept! This morning we have a clinic visit for Sydney and I am off to the showers!
LITTLE RED RIDING SYDNEY
6:00 AM 2/6/2004
Sydney's doctor visit went splendidly. We even got the privilege of seeing our dear Dr. Eames. I do not know why we have developed such a close relationship with her but she almost seems to be a part of our family. However, don't tell her that. I am not sure she actually knows. Sydney is doing so spectacularly well that it almost seems that the only reason that we ever go is to alleviate our concerns and get our questions answered. Sydney's counts are once again on the rise. She now has a platelet count of over 90,000 and a white count of about 3000. Given the fact that she is only about 60 days post transplant, Sydney could be considered a well oiled little toddler. The bulk of our discussions surrounded our upcoming randomization into the monoclonal antibody trial and a required urine test.
First, the urine test. We hate urine tests. Not just one of us but all of us. We have purposefully kept Sydney in diapers throughout treatment for several reasons. For one, when Sydney is in treatment there are many times when her urine has to be tested every two hours. These particular urine tests can be taken by swabbing a cotton ball that is placed in the diaper. By using this method she does not have to be woken up every two hours all night long to go to the bathroom. We simply have to change her diaper while she sleeps. The problem arises when a test requires a substantial amount of urine or urine over a longer period of time. In these situations Sydney is left with the option of having a baggy taped to her "who-ha" or the dreaded Folly (note my spelling as I thought this was clever) catheter. The baggy taped to her "who-ha" seems to work only about 10% of the time. This presents a conundrum because one of the tests that requires a urine sample is not even applicable to Sydney. The test is called HVA/VMA which measures the urine for markers which are indicative of neuroblastoma. Sydney simply never had these particular markers. That is one of the funny things about neuroblastoma. There are no tests that work on all kids and this is another reason why more research needs to be done. Regardless, none of us were happy about the proposition of the baggy so we thought it would be worth the effort to get the urine by the potty method. It actually felt like a new version of little Red Riding Hood. The first potty was too big. The second potty was too dirty. And the third potty, the one at home that beeps when you tinkle, was just right. After traumatizing Sydney with the big potty and the dirty potty at the clinic we convinced the nurses that it would be worth the effort to try at home. Since we were dealing with a four day time table for when the test was due they gave us the benefit of the doubt. Lynley and I scooped her up and took her home. When we got home I talked to Sydney about going potty. I told her to hold it and tell Daddy when she needed to go. She did not like the idea and gave me a resounding "No!" After about an hour I went back downstairs to see if she was ready to go potty. She avoided eye contact and I figured that given that answer it was as good as any to give it a try. I lifted her up and took her upstairs. There was a small battle and a little whining but once we got into her room it had subsided. I took off her diaper and explained the necessity of her going potty and the consequences of the baggy which she new all to well. As I think back I have to laugh at this intellectual discussion I was trying to have with my daughter. Regardless, I set by bottomless daughter down on the floor and asked her to use her potty. She asked for some apple juice, a blanket, and five books which I delivered at her command. She sat on her potty and told me to go away. I left the room. Occasionally I would peek in and if I got caught she would shout back at me to go away. It was so cute to watch her. I do not know where she learned it but she even accurately portrayed the straining position and the occasional grown would be emitted from her room. We finally came to the agreement that she would come get me when she was finished. After about five minutes my half naked daughter came running into my bedroom with a big smile on her face. I rushed in to find about 40ccs of urine collected in the bottom of her potty. We both celebrated and jumped for joy. This was indeed a proud day in her life. After the obligatory clapping and celebration I raced to get the urine cup and a bag of ice. Within minutes I was off to the clinic. I was such a proud Dad strolling into the clinic proudly displaying my bag o' cup o' urine. And yes, anyone who was unfortunate enough to cross my path got to hear my proud declaration that, yes, this was my daughter's peepee and she made it on her own. I told all of the parents. I told the receptionists. I told the parking attendant. I made an extra effort to even stop each of the nurses to let them know. Boy life is good. What have I come to?
Once again, I have run out of time. The other issue was that Lynley and I have different opinions regarding the upcoming randomization. Neither of us are wrong and we both have valid concerns. It just does not seem right that parents should have to make these decisions for their child. Perhaps, tomorrow I will be able to go in depth. For now my purpose can pee on her own.
5:10 AM 2/7/2004
FACE OFF
What happens when two parents disagree about the treatment options that lie in front of their child? This is a situation that we have never run into before and one that is perhaps of value to all of the other parents that are out there. I do not want to over dramatize this but the simple fact remains: Lynley and I disagree about the future treatment options that lay before Sydney. The problem is that neither one of us is wrong. There is no right answer. There is no wrong answer. The problem is that Sydney will have to live with the decisions we make. Lynley and I are getting along wonderfully. We are happily married and as always I am deeply in love with her. We are not at odds and our discussions do not produce anger and resentment. Yet, the problem remains. We disagree and we only have two short days to come to a decision that we can both live with. There are many issues at hand and delving into them individually is probably the best course of action.
First off, we are well prepared. Not only are we both intimately familiar with the protocol, the process, and the side effects, but we are prepared with the study rationale, research support, and the actual instructions for administration. We know the good, the bad, and the ugly. We are equally competent to discuss any of the materials and we have the same reference of information. In other words, we have freely shared information with each other. We have read the same words in volumes of documents and yet we still have different opinions.
The question: Should we have 14.18 monoclonal antibody therapy if randomized. Yes, this is a decision we should have made prior to signing the documentation. We were of one mind then but as we have gotten closer to the actual date opinions have changed. Perhaps a brief overview of our choice is in order.
The official purpose of this study is to determine if monoclonal antibody Chl4.18 + cytokines + 13-cis-retinoic acid (RA) improves event free survival and overall survival after myeloablative therapy and stem cell rescue as compared to RA alone, in high risk neuroblastoma patients who have achieved a pre-ASCT (autologous stem cell transplant) response of complete response (CR), very good partial response (VGPR), or partial response (PR).
The standard treatment for neuroblastoma consists of anti-cancer drugs (chemotherapy), surgery, and radiation therapy. Children with high-risk neuroblastoma often respond to standard treatment at first, but there is a high risk that the cancer will come back. This study is being done to try to increase the number of children with high-risk neuroblastoma who can be cured.
Prior to participation in this study Sydney received chemotherapy, surgery, radiation therapy, and stem cell transplant treatment on study A3973. Sydney responded to treatment on A3973. The purpose of this companion study is to compare two different treatments aimed at maintaining or improving your Sydney's response to treatment on A3973. This study involves the use of an investigational biologic therapy, ch14.18, a monoclonal antibody. Monoclonal antibodies are proteins made in the lab, designed to bind to specific cancer cells. Ch14.18 was designed to bind to neuroblastoma cells and other cancer cells that express the GD-2 antigen. When ch14.18 binds to the neuroblastoma cells, the body’s immune system is stimulated to attack and kill the neuroblastoma cells. Ch14.18 represents a new kind of cancer therapy that, unlike chemotherapy and radiation, targets the destruction of cancer cells without destroying nearby healthy cells.
There is laboratory evidence to suggest that ch14.18 can target the body's own immune cells to destroy cancer cells. These immune cells armed by ch14.18 include cells that are activated by GM-CSF and cells activated by Interleukin-2. A study (CCG-0935) has just been completed that first determined the highest dose of ch14.18 that has manageable side effects when given with GM-CSF after stem cell transplant. The second part of that study (A0935a) has also determined a dose of ch14.18 that has manageable side effects when given with Interleukin-2 after stem cell transplant.
GM-CSF is a substance that is similar to a substance made by the body in all individuals. Under normal circumstances, the body makes small amounts of GM-CSF that helps it to produce normal infection fighting white blood cells. It is now possible to make GM-CSF outside of the body and give humans much higher doses than their own body makes. There is some evidence that, in the lab and in animals, GM-CSF increases the anti-cancer effect of monoclonal antibodies like ch14.18.
Interleukin-2 is a substance that is similar to a substance made by the body in all individuals. Under normal circumstances, the body makes small amounts of Interleukin-2 that helps white blood cells fight infection. It is now possible to make Interleukin-2 outside of the body and give humans much higher doses than their own body makes. There is some evidence that, in the lab and in animals, Interleukin-2 increases the anti-cancer effect of monoclonal antibodies like ch14.18. The study is aimed at finding out whether Interleukin-2 can help improve the efficacy of ch14.18 in humans.
Once Sydney is registered on this study, she will be randomly assigned to one of two treatments (Regimen A or Regimen B). Random assignment means that the treatment to which a child is assigned is based on chance. It is like a flip of a coin, and assignment is done by a computer. Neither the patient nor the researcher chooses which treatment the child will receive. Patients will have an equal chance of being placed in either treatment group.
The two treatment arms are the following:
Regimen A: Treatment with Isotretinoin (Accutane) alone. Isotretinoin is a drug closely related to vitamin A and has been shown to help stop the multiplication of remaining neuroblastoma cells. Regimen A is the standard treatment and is the treatment a patient will receive if she chooses not to participate in this study and completes the Maintenance phase of treatment on the A3973 study.
Regimen B: Treatment with Isotretinoin (Accutane) + ch14.18 + Interleukin-2 + GM-CSF. Regimen B is the experimental arm of the study. It is important to keep in mind that ch14.18 is an experimental drug and it is impossible to predict whether or not Sydney will benefit from its use.
Now, Regimen A, is well documented and we no throngs of kids who have followed that path. This treatment will last for atleast 6 months and is considered oral chemotherapy which will be administered at home. It can produce skin problems, nausea, changes in skin color, upset stomach, dizziness, fluid build-up in the brain causing headache and nausea/vomiting and an abnormality of the eyes, low numbers of red and white blood cells, psychiatric disorders including aggressive and/or violent behavior, and a condition called retinoic acid syndrome with an increase in white blood cells, fever, difficulty breathing, and low blood pressure. This is not an optional treatment and we will receive it regardless of our choice.
Regimen B is the question. With this option you still get all of regimen A but you also get all of the other benefits and side effects that come with its drugs. This treatment is inpatient and will require hospitalization for 7 to 14 days per month for six months. The list of potential side effects is enormous and include such things as severe pain, the risk of secondary cancers and yes, even death. The monoclonal antibody and the GMCSF are the least of our worries. It is the IL-2 which scares the bejesus out of us. The monclonal antibodies will produce temporary severe pain. That is a given. Luckily it can be managed with IV pain medication. Another side effect includes wild fluctuations of blood pressure. The GMCSF also has a list of side effects but in comparison seem relatively benign. As a parent signing all of these disclosures you get used to signing disclosures which include horrible side effects so, remember, when I say benign, I am saying that the list of side effects do not include immediate death. I am talking about things like fever, chills, headache, muscle pain, rash, bone pain, stomach cramps, weakness, loss of appetite, nausea, sudden redness of the face, etc. There are some fairly serious side effects to GM-CSF but they happen rarely. IL-2 this is the nasty one. It was an overdose of IL-2 which led to the death of two children on this study and shut it down for several months while federal investigators did their thing. Let's just say the the list of potential side effects from IL-2 contains just about everything imaginable and, yes, even death. I don't really think that there is really anything more to say about it.
Now you might think that there is an answer here. You might think that the research produces some fairly cohesive guidelines about what this treatment should provide. You might think that we would be able to say that this treatment increases her chance of overall survival by 20%. But, alas, we can't. On paper, if you read the study rationale it shows a clear reasoning for success. It shows that it should work - theoretically. About the only thing we have a pretty good grasp on is that it should not reduce her chances of survival. So this begs lots of questions without even discussing quality of life, not only for Sydney, but our family. So what do we do? Tomorrow, I will tell you more and get into the crux of the disagreement but now my princesses are awake.
DECISION DAY
5:00 AM 2/9/2004
Well at 8:30 AM this morning we will find out what options lay before us in the next few months. This weekend has been fairly sleepless for both Lynley and I. I have had a constant stream of research numbers running through my head and Lynley, I think, has had the same with the additional added benefit of being 8 months pregnant and uncomfortable. Our disagreement over the next path to take has subsided. Lynley feels fairly comfortable with letting the randomization decide our path. It is still an awful decision for a parent to make and even worse for a child to endure. Right now, without an immunotherapy based treatment we know our odds. We know that over half of the children that have reached the point of therapy that we have achieved will relapse without more treatment in addition to accutane. With current induction therapies and stem cell transplant almost 70% of kids diagnosed with stage IV neuroblastoma get to the point that we are. Unfortunately the other 30% has already earned their wings. Over the next 4 years another 35% of the original group will succumb to the disease because of relapse with the bulk of these children loosing their battles in the first year after treatment. I guess you could say that we have reached the half way point in our survival journey. In that sense, it is if we sit in the position of now having a 50% chance of survival. I don't like those odds. I like them better than the odds that we had for survival in the beginning but suffice it to say that it still isn't 100%. By the way, I realize, to an extent, this is fuzzy math, but, it works for me. Now, given all of that, how do we increase Sydney's odds of survival. This is where the situation gets tricky. Early in this journey, at diagnosis, this was an easy decision. Our options were: 1. Do the treatment and she has a 10% to 30% chance of survival. 2. Don't do the treatment and she would earn her wings within two months. That was a no-brainer. We also had the luxury of some fairly standard induction protocols. They had been well tested and were known to be effective for many nueroblastic tumors. There really were not any decisions to be made about what type of therapy was to be completed. Just about every hospital in the US was using the same induction and transplant scheme. Foreign hospitals were using slightly different schemes but all had about the same rate of success. Again, it was a no-brainer. However, now, while we are in remission, while we have a healthy, beautiful baby girl, while we have already tried everything that is known to work, we sit at the point of making a decision. We can accept the odds that lay before us or risk Sydney's health and well-being to try and increase those odds. We can turn our lives upside down for another six months to do something that MIGHT make her odds better. It just isn't an easy decision but we are prepared to put our next foot forward.
You see, the theory is that even though the doctors can't find it, the belief is that these kiddos still have some neuroblastoma left. They believe it is hiding at the cellular level. It sits there lurking, waiting, and preparing itself for the next time to strike. They think these hidden cells are the reason for relapse. The immunotherapies are targeted at eradicating these cells and training the body to kill them on their own. The monoclonal antibody therapy or the DNA vaccine therapy are the two most promising approaches to achieving a cure. Unfortunately, right now the two treatments are separate entities for children in Sydney's position but there is strong evidence in mice that suggest that when combined they can have a 100% immunity response. Unfortunately (again), we are years away from a human trial. So we are left with partial solutions that carry significant risks. However, if it increases Sydney's chance of survival even in the interim it is my belief that this is what we must do. I can't quantify it. I do not know if this will increase her overall survival by 0%, by 5% or by 50%. But I do know that it is more likely to help her than hurt her and therefore it is a risk we must take. I don't think we could live with ourselves, at this point, if Sydney relapsed and we did not do everything that was humanly possible. We have to give her her best chance at success. So I sit here arguing a point that may be moot in just about 3 hours. I imagine that if we are randomized to have the monoclonal antibody therapy her we will have a rather short visit and we will come home prepared to go back in the hospital at the end of the week. If we are not randomized, I imagine the visit will be much longer as we investigate other alternatives elsewhere. At the very least it should be a very interesting day. I think I will spend the next few hours praying for answers. Although my purpose is clear sometimes the answers are not.
WE ARE OFFICIAL (for better or worse)
11:22 AM 2/9/2004
At approximately 10:00AM this morning, while I was busily helping them build toys in the playroom at the clinic, Sydney was officially randomized to the monoclonal antibody arm of the ANBL0032 COG study. She will start therapy this Friday and will begin her hospitalization on Monday.
THE VIRTUAL YING YANG RETURNS
4:50AM 2/10/2004
Well, now that I have had almost a day to digest the fact of what is coming over the next few months I have also felt a resurgence of all of my emotions. I have had time to digest the fact the for a good portion of the next six months Sydney will once again be in the hospital. New treatments always seem to stimulate the mind and my worry system. We have been blessed by not having had to have treatment for a while. We have had time to grow as a family and focus on things outside of the world of cancer. All of a sudden, that has, once again, changed. I am absolutely ecstatic that we have the opportunity to try another treatment to keep this monster at bay but also terrified of what lies ahead. I am confident and scared. I am ready and, yet, ready to run away. I am certainly dealing with a complex set of contradictory emotions and I can only imagine what is going through Lynley's head. It just so happens that we start the nastiest leg of Sydney's treatment on "Rice's" due date. When it comes to change and new treatments my adrenalin gets pumping. I prepare and get ready. There is a sense of anticipation and willingness to begin. On the outside, it almost seems as though I am cavalier about the whole thing. I guess this is where I get back to feeling like I am once again two Mark's. I spend my nights inundated with worries and what ifs and my days in aggressive preparation mode. Once again, I have done the research (although the answers still seem less than clear). I have already created dosing charts for all of Sydney's upcoming drugs and have researched the side effects so I know what to look for. Now it is time to figure out what to expect emotionally and, once again, I have called out to the NBLAST list for answers. I had forgotten how all of this felt. I know it seems silly to think that you can forget about all of the emotion and worry but it does happen and now that we are reentering the world of a new treatment I can feel it coming back. We will get through this and I am back to firmly placing one foot in front of the other. My purpose is clear even if my emotions are not.
A FREE WEEK
5:40 AM 2/11/2004
Did you realize that we were going to start treatment on Friday the 13th. I am not normally superstitious but I was somewhat glad to receive Dr. Eames phone call stating that we would be putting off therapy for one week. Apparently, a couple of the scans that we had 3 weeks ago (namely the MIBG and the bone scan) were not within two weeks of the start of the antibody study and, therefore, we are required to have them done again. Because the MIBG takes five days to administer we are now starting our next round on Friday the 20th. Although we hate scan week there are many benefits to this little snafu. First we do not start on Friday the 13th. Second, as the protocol laid out, Sydney would have been receiving antibodies and IL-2 during the time that Lynley would be likely to give birth. With this altered schedule the timing of events works out much better. We had talked about inducing Lynley's labor to meet the time requirements which I assure you brought a smile to Lynley's face but now we have a wider window of opportunity. This gives us another week to prepare for a very busy time in our lives. Lastly, this gives me time to get my ducks in a row. This protocol is complex and I am glad to have an extra week to prepare for it. I have just about finished my dosing charts which I created in Excel. This little series of formulas provides me the correct dosing information so that I can quickly enter the dilution of the mixtures and get the right rates for each drug that Sydney will be administered. This even gives me a chance to send it to my veterinarian to check my work for accuracy. Yes, I said veterinarian. Hey, he is good at what he does and I figure if he can figure this stuff out on a multitude of species he can certainly do it for 1 little girl. It sure dose pay to have friends in high places. It also buys me some time to create my side effect flip charts which allow me to know what side effects to look for, what the thresholds are, and what should be done if they arise. I know what your thinking. Yes, I am paranoid but that is my job as "Super Dad." After all, the alternate spelling of "anal" is "M-A-R-K". So, right now, I am going to take a somewhat large sigh of relief. Although it is temporary I appreciate the time to gather myself and prepare my family. My purpose awaits.
IT IS PERSONAL
5:45 AM 2/12/2004
Sydney is doing well. We have even had the opportunity to take her out on the town a couple of times for dinner over the past couple of weeks. She is happy, honery, and still 50% kitty cat. Sometimes I wonder if they accidentally mixed up some of the stem cells that they gave to her in transplant with some that came from a cat. She has now added purring to her "catlish" repertoire and I am referred to as "Daddy kitty" most of the time. I wonder where she gets much of this behavior but I guess, all things being equal, it really isn't that big of a deal in the bigger scheme of things. She has regained most of her energy. She has a good appetite. She even has grown her eyelashes back and a thin film of hair covers her head. It is at times like this that neuroblastoma feels so far away. We feel like we have beaten it only to be shocked back into the reality of the world in which we live. We lost two more of our loved ones to neuroblastoma this week. Both of their families participate in "Lunch for Life" and their stories were not all that different from Sydney's. These were sweet happy kids that came from extremely loving families. There was nothing abnormal about them. They were just like the millions of other cute kids out there in the world. The only difference was that they had this monster lurking inside them. It just isn't right. When Sydney is doing so well we get the luxury of forgetting. We get to think of normal things and we get to do normal things. Even though our lives are still complicated by numerous medical chores and drug administrations we don't have to carry the burden of this monster as much. We get to believe that we have won. Unfortunately, so did Brady and Luke. It is this realization that once again shocks my system back into reality. All of a sudden I can once again taste the fear and I regain my sight. I realize that this battle is far from over. So for the time being, while I have a chance to breathe, I am going to appreciate what I have today and continue to live the next to the fullest. I will figure this monster out. I will do it for Brady, for Luke, and for the multitudes of others out there who have earned their wings. I will do it for Sydney, for the thousands of others that sit in her shoes, and for the thousands of others who still have not entered this world. There must be an answer and I will find it. My purpose is clearer than ever.
NINE LIVES
5:20 AM 2/13/2004
Another Friday has dawned. Yes, it is Friday the 13th and I am happily thankful that Sydney is not starting monoclonal antibody therapy today. It is funny. I was never that superstitious before but, just the same, I am not crossing the path of any black cats either anymore. I figure that we have been pretty lucky and I am not going to jeopardize any of our successes. Knock on wood, rub the rabbit's foot, any be especially thankful to the guy upstairs. It might just be me but life seems to be moving very quickly. I cannot believe that Sydney has been fighting this battle for eight months. I feel like I have lived several life times in that period of time. I know Sydney must have. Maybe there is something to all of that cat behavior. Maybe she does have nine lives after all. Regardless, I am amazed at how the time has flown by. While I am throwing out clichés I might point out that time must not only fly when your having fun because that certainly would not describe this journey. I guess that when you live minute to minute and hour to hour the concept of time goes out the window and the next thing you know your minutes have turned into weeks and months.
Today, Sydney has a clinic visit. It should be an uneventful and hopefully quick jaunt to the oncology office. We will be performing our morning lab draws here shortly and off to the clinic we will go. I imagine Sydney will be excited to hear that she will get to go to the clinic playroom. It is still one of her favorite places to go. From the two year old perspective it makes sense. She gets to be around other kids with "noodles". She gets to play in a stocked play room with the complete attention of both of her parents. She gets to eat all of her favorite snacks and everyone knows her name. The amazing thing to me about the clinic is that every child their is the center of attention. It is definitely a comfortable place to be.
Lynley is doing pretty well. She is uncomfortable but healthy and on occasion she even sits to take a break. For those of you that know Lynley that is quite a statement. The fact that she sits at all is an amazing triumph. We are still in the process of naming "Rice." We have developed a list of names (Yes, "Rice" has been included, as well as a selection of some of our other favorite starches) but we haven't come up with anything for sure. Perhaps, we should just put them up on the website for a vote. Hey, I might just do that this weekend. Well, a busy Friday lies before me. It is time for me to be off. My purpose awaits.
SNOW DAY, POOR SYDNEY
5:10 AM 2/16/2004
We had a great weekend at home and Saturday was even complimented by about 4 inches of snow at our house. Sydney really loves the snow. It brought back memories of when I was growing up in El Paso. We had occasional snow but it never really justified the purchase of "snow clothes." So, to compensate, my mother would instead wrap me up in layers of normal clothes. I remember having to waddle stiff legged out into the snow. I looked somewhat like a mismatched version of the Michelin man. Sydney looked about the same. By the time we had bundled her up she looked like a little snowball herself. We would go outside roll up snow balls to make a snowman and jump and play in the drifts. Within about twenty minutes she would be soaked from head to toe and it would be time to roll her back into the house. At that point she looked very similar to the snowman as the snow had stuck to every inch of her body. Once inside we began the strip down, warm up, and change of clothes. Needless to say, our dryer was working overtime. By the end of the day most of the snow had melted. It made for a nice vacation but Sydney was not ready for it to end. That evening she sat in front of the window staring at the now snowless front yard. She would say "Poor Sydney, snow all gone." She was excited to go to sleep because she thought that it would bring the snow back but, alas, the next morning brought disappointment for poor Sydney.
This week we are back to scans on Tuesday and Thursday. Sydney has been taking her ever important Potassium Iodide drops (It protects her thyroid from the radioactive material) in preparation for the MIBG scan. It is nasty stuff but she has been a trooper at taking her medicine. On Friday, we will begin our monoclonal antibody therapy. The first three days will be outpatient and she will receive a daily two hour infusion of GM-CSF. On Friday we will receive it at the clinic and this weekend we will have a home health nurse come by to administer it. Early the following Monday morning we will be admitted to Cook's for our first round of monoclonal antibodies. We anticipate that we will be hospitalized for about a week. The only snafu is that Lynley's OBGYN believes that Lynley will have the baby either this week or the next. It should make for a very interesting time. Luckily, the hospitals are relatively close to each other.
Okay, I have done it. It is crunch time and we need a name for baby "Rice." So, this weekend I created the official voting poll for "Rice." Since we are too incompetent to pick a name for our second child we are asking for your help. You can vote as many times as you like. This is a monumental occasion. Just think, you are helping to name the world's best professional golfer of the future. Yep, the next Tiger Woods is on his way. (By the way if someone puts Tiger Woods II as a suggestion I will delete it. No animal names please. We are trying to stick to starches and food products! JK) Anyway, I think it will be fun to see what the world has to say. I will post the results daily on the front page starting tomorrow. Thank you for your help -- AGAIN!! You can vote here!! I am off to another purpose filled day!
FRIED RICE DUNGAN - HMMMM!
5:10 2/17/2004
I absolutely can not tell you how much fun it was to watch the votes come in yesterday. We received a little over 2100 votes in one day. So far, we have received some great new name ideas that had never even crossed our minds (not including the one mentioned above although I think that is Sydney's favorite!!) It was also interesting to see my business partners, Monty and Chance, weigh in with their opinions, although I am thankful that their choices remain near the bottom of the list. I guess they get used to hearing me yell "Monty, Chance!!" around the office and seem to think it has a nice ring to it or, more likely, they figure if I named my child Monty Chance I would have to say it with a different connotation. Nevertheless, it will be interesting to see what today brings. Thank you for all of your suggestions and, just as importantly, a fun time.
Sydney is doing great. The sheen on her head has now dulled and the hair is becoming more and more noticeable by the hour. It is hard to tell but it looks as though it is coming in much darker than before. Of all of the things that have happened to Sydney throughout her treatments this seems to be the strangest of all. I have become so used to kissing a little bald head and it seems strange to kiss a fuzzy one. Her eyelashes have just about grown back in completely and her eyebrows are starting to have some texture. It really is amazing to see it all happening so quickly. Emotionally, Sydney is doing well. She spends more time playing alone but regardless of where she is and whether she is alone or with others she continues to talk, sing, or meow. Her favorite pastime continues to be reading. She will spend hours a day cuddled up with her books flipping through the pages jabbering. Another new pastime has become using the big girl potty. Although we are trying to keep her in diapers she has established a nightly routine of using her potty. As soon as we go up the stairs to get ready for bed she starts chiming in, "Diaper off, Sydney go potty in big girl potty!!", and, sure enough, within seconds our bottomless daughter is scurrying around her bedroom gathering books and stuffed animals to join her on the potty. By the time she is actually ready to sit on the potty there are mounds of books and stuffed animals surrounding her within about a five foot radius. At this point we are told to leave and Sydney goes to her business. She is successful every time although the ritual takes about thirty minutes to complete. After the official announcement that she has achieved potty and we have bestowed upon her a sufficient amount of praise the game of pin the diaper on the two year old begins. For some reason, after going potty, she has an aversion to putting her diaper back on and it always becomes a game of chasing her around the room. These are the things memories are made of and I am so glad to focus on this fun aspect of parenting for a change. We only have three days before we start treatment again and I would love to have time just plain stop for a while.
Today we have Sydney's bone scan. This is the first of the repeat scans that we have to accomplish this week. Luckily, for this scan she does not need to be sedated so she will get to eat and drink this morning. Unfortunately, with our MIBG scan on Thursday we will not be so lucky. It will require sedation and the scan does not take place until well after noon. I am not particularly nervous with today's test, as we had this scan just three weeks ago, but there still is a little fear in the back of my mind. You just never know! Well, I am off to another purpose filled day and it is time to move on. We look forward to seeing everyone's votes.
THE COUNTDOWN BEGINS
2/18/2004
This is our last normal day before the next round of treatment. Tomorrow will be jam packed with scans and clinic visits and Friday marks our first day of treatment. I am amazed at how quickly the last few weeks have gone by but I am especially amazed by this last week. I have once again been practicing my procrastination theory and have chosen, subconsciously, not to think about the upcoming treatment. Well, that is not altogether true. I have prepared tediously. I have finished my dosing charts. I have reread all of my research and I have prepared my side effect flip charts. I am prepared for everything -- and nothing. It still seems as though there are two Marks. For the most part, when reading through all of the information related to this trial I am able to step outside of the reality. I am able to read it as though it is not personal, as though it will not be happening to Sydney. In short, I am able to read it as though it is going to happen to someone else, or better yet, that it is all just theoretical. In that sense, it really seems like an arms length transaction for me. The problem with that is that I have been through this before and I know that, all to quickly, it will be personal and the other Mark will start to appear. At this point, I am really interested to see how I will handle it. It really is strange. It is if I watch myself from outside of my body. I know what is coming but, I won't let myself live the reality of this treatment quite yet. It isn't that I don't think about how this will (or could) potentially affect Sydney (trust me that is on my mind) it is just that at this point I am not able to attach any emotion to it. For me, right now, it is all just medical cause and effect. Part of it is that I am so very positive of Sydney's success. I don't view the upcoming potentially life threatening side effects as threatening Sydney's life. I see them in this sense:
"Response to hypotension during ch14.18 and GM-CSF
If hypotension not associated with anaphylaxis occurs, treat as follows:
a. Asymptomatic patients should be monitored closely.
b. Symptomatic patients and/or those with systolic blood pressure < 70 (<65 for infant)
mm/hg or a decrease that is more than 15% below baseline may be treated
immediately with:
i. If occurs during increase of ch14.18 rate, decrease rate to previously tolerated
rate.
ii If persists, stop ch14.18 infusion
iii. Fluid bolus: NS 10ml/kg, or NS3-5 ml/kg, if administered with albumin (25%) at
1 gm/kg. May be limited by symptomatic fluid overload, (i.e., pulmonary edema,
tense ascites). Fluid bolus can be repeated once or twice as needed.
iv If unresponsive, may give Albumin (25%): 1 gm/kg IV stat then Q 6-12h prn, if
serum albumin ≤ 3.0.
v. RBC Transfusions: maintain Hct > 30%.
vi. If responsive, may resume ch14.18 infusion at 50% of last rate 1 hour after
normalization of blood pressure, may escalate infusion rate as tolerated, to
complete the prescribed full dose.
c. Hypotension, which does not respond to these measures, requires:
i. IV pressors, preferably phenylephrine (rather than dopamine).
ii. If responsive, may resume ch14.18 infusion at 50% of last rate 1 hr later, may
escalate infusion rate as tolerated, to complete the prescribed full dose; if ch14.18
infusion is tolerated, give GM-CSF at 50% dose next day and thru the last dose
of ch14.18; if tolerated, may give GM-CSF at full dose after completing the 4th
dose of ch14.18.
iii. For grade 3 hypotension, modify dose"
You notice that the word patient is used. Right now, that is exactly how I view it. I am incapable of seeing it any other way. I see that if Sydney has a particular problem with the administration of these drugs, we will treat her accordingly and she will be fine. It really is a strange perspective for a father isn't it. But, then again, right now, only one of those father's is rearing his head and I know the other one is right around the corner. So, how I am doing? Who knows? The important thing is that I am prepared and ready to be there by Sydney and Lynley's side when it counts. In some sense, all of this preparation gives me purpose and a sense that I am doing something that I can control. I think Lynley would call my purpose an obsession but research has always been my way to make peace with myself during Sydney's treatments. The past has dictated that knowledge is power and I am sticking to it until I am proven otherwise.
While I am on my self analysis rampage I might as well address a question that I have been getting a lot of. So, Mark, are you happy that Sydney was randomized into this treatment? The answer is two-fold. Yes, I am happy because this trial appears to me to hold some of the best promise available for Sydney's success. I truly believe that it will increase her odds of overall survival, but, it is not the trial that I would like her to be on. The trial I would like to see Sydney treated on is not yet available to humans. The trial that I would like is actually very similar to this one but with the addition of a DNA vaccine. Unfortunately, there just isn't enough research funding to get this to the next level right now and I guess that it is another example of the purpose of "Lunch for Life." There are so many of these promising treatments that have just never made it to human trials because of the lack of funding. The reason that I really would like this trial is that it has been shown to be completely protective from metastatic neuroblastoma in vitro and it is one of the only pre-clinical trials to do this without severe toxicities to the patient. So, to answer my question again. Yes, I was happy for Sydney to be randomized but it is not the silver bullet that I am looking for. The answer still lies in research and until I can fix that these children will have to keep tolerating the best that is available.
Okay, enough of the self analysis mumbo jumbo. I am putting the over under on the birth of "Rice" on this Saturday. Lynley is showing medical signs that she is getting closer to active labor. If you read the research the baby could come any day now or it could be as long as another week or two. On a personal note, if he does not come out soon I am pretty sure that either Lynley's tummy will either explode or her belly button will pop off. There is just too much pressure and I am pretty sure that no bigger baby could fit into my little wife. The time has come. Place your bets. In fact, that gives me a great idea. Make sure you tune in tomorrow. For now, I am off to my last relaxing day with a purpose for a while.
LET THE FUN BEGIN
4:20AM 2/19/2004
Today will be jam packed for Sydney and, hopefully, all of you. This morning we will have a clinic visit which will include several tests in preparation for our start of the next leg of treatment tomorrow. Our visit will be followed by a trip to radiation for Sydney's sedation and finally in early afternoon the MIBG scan. Sydney will not be able to eat or drink anything but clear liquids after 7:00 AM. After 10:00 AM she will be completely off of the oral wagon and will not be able to have anything by mouth until after the scan this afternoon. She will not be the least bit happy. I wish we could explain it to her so that she could truly understand but unfortunately she is still too young. I also wish they would schedule these scans earlier in the morning for these little ones. Afternoon scans really make it difficult for them. So, in Sydney's words, "Poor Sydney!!" Now on to some happier more exciting stuff.
After having so much fun playing the Rice naming game I thought it would be fun to put together a pool to guess when the birth of "Rice" would indeed occur. So, that is exactly what I did. This gets far more interesting though. The winner of the pool, the person that guesses the correct time, will win a brand new Dell computer and a "happy" (In Sydnyan, this is a present to be named later). I have created a web page that includes a calendar that has broken up the days into thirty minute increments. You will have the opportunity to select any thirty minute increment that you like. If "Rice" is born within that thirty minute time slot you will win the prize. If more than one person selects the correct time slot a drawing (to be performed by Sydney) of the winners will be done to select the grand prize winner. Now, there is a catch. To be eligible to win the computer I have added the requirement that you must make a donation to the Children's Neuroblastoma Cancer Foundation (CNCF) of $5.00 for each time slot that you select that you want to be eligible for the grand prize. For those of you that choose not to make a donation to the CNCF you will still be eligible for the "happy" and, in addition, you will also receive bragging rights and the Official title of "Uncle Ben - the Fried Rice Seer" (This title also comes with added responsibility. Because we are now paranoid parents that have had one child with cancer and because you have proven an innate ability to see into the future we will contact you frequently to ask you questions about what the future holds.). Each person will be limited to the five free guesses. After you have made five free guesses none of your other votes will be counted unless they are paid for by a donation to the CNCF. For those of you that want to be eligible to win the Dell computer the process is quite easy. After making your selections on the game board you will be provided with a secret code. You will be instructed on how to make the donation to the CNCF and how to use your code. In addition, for every five time slots that you purchase you will receive a sixth entry for free. Your free entry will be eligible to win the computer. Now, if no one correctly selects the time slot in which "Rice" is born that is "certified" with a donation to the CNCF the computer will be donated in "Rice's" name to the CNCF. (By the way, if anyone is interested in donating the computer as the grand prize please contact me at mdungan@edocendo.com. Currently the computer is being funded out of the donations received from this game.) Regardless of how you decide to play the game, I know this will be fun and it also has the added benefit of, once again, generating funds to aid in research for the cure of neuroblastoma. It is little gestures like this, that when added in bulk, will save these kiddo's lives.
Examples: So no one gets confused I thought it would be helpful to have some examples of how to play the game.
Example 1 - I want to play the game for free. - Go to the Rice Pool page here. Sign up for an account, make your five selections from the times available. When you have completed the game disregard the secret code. Sit back and hope that you won.
Example 2 - I want to play the game for free and also make a donation to play to be eligible for the Dell computer. - This is simple. Play the game twice. Go to the Rice pool page here. Sign up. Make sure you remember your email address and the password that you provide on the signup page. Once completed play the game. Make your five free selections from the times available. When you have completed the game disregard your secret code. You have been registered to play the free version of the game. Then, go back to the Rice Pool Page and choose to "logon." Use the email address and password that you provided on the sign up page. You will once again be sent back to the calendar to make your selections. Make your selections and press the submit button. You will receive a new secret code and instructions on how much to donate and exactly what you need to do to be eligible. You will need to donate $5.00 to the CNCF for each selection you make. Remember, however, that you get every sixth selection for free. In other words, if you want to make 2 selections to be eligible for the Dell computer you will need to donate $10.00 to the CNCF. If you want to make 6 selections to be eligible for the computer you will need to donate $25.00 to the CNCF If you want to make 12 selections to be eligible for the computer you will need to donate $50.00 to the CNCF.
Example 3 - I made 10 selections but I only donate $5.00 to the CNCF. - The first time slot that you selected (in chronological order) will be eligible to win the Dell computer. The next five time slots selected in chronological order will be eligible for the "happy", bragging rights, and the official title. The remaining timeslots will be disregarded.
Example 4 - I selected 20 timeslots and did not make any donations. - Only the first five selections in chronological order will be eligible for the "happy", bragging rights, and the official title. No matter how many times you play the game for free only the original five free selections will be eligible for the "happy", bragging rights, and the official title. You will not be eligible for the Dell computer unless you play again and make a donation to the CNCF.
Hopefully that should clarify everything. If you have any questions you can contact me at mdungan@edocendo.com.
Enough of the rules. Let me play. The sign up sheet is here.
On another note, I am completely amazed at the voting for "Rice's" name. There is still time left and we won't make our final determination until my strapping young son has entered this world. Get you favorite name to the top of the list. As of this morning we have had over 20,000 votes. The race is on.
Have fun and we will be thinking of you while we are at the hospital today. We can't wait to get back to see the results. I am off to my purpose.
DAY 1 OF THE REST OF OUR LIVES
5:20AM 2/20/2004
Yesterday can be characterized as LONG. I know I might of mentioned this before but I really dislike scan days. We leave early in the morning and basically spend the rest of the day waiting. The only real treat was that it appeared to be neuroblastoma day at the radiologist's office and we got the opportunity to catch up with some of our fellow neuroblastoma warriors. The rest of the day teetered between really boring and extremely boring. Sydney did fairly well and the good news is that all of her scans came back clean. It is pretty bad when you are there for so long that you actually get to hear the official medical opinion about the scans you took that day first hand. Regardless, I am glad that today is here.
Today marks the first official day of our new treatment. It will be celebrated by a trip to the clinic to receive our first dose of GM-CSF. Granulocyte Macrophage - Colony Stimulating Factor, or GM-CSF is very similar to the GCSF shots that we would give Sydney for the ten day period that followed each round of our induction chemotherapy.
For all of you medicos out there: recombinant human GM-CSF is a glycoprotein of 127 amino acids characterized by three primary molecular masses of 15,500, 16,800, and 19,500 daltons. The amino acid sequence differs from the natural sequence by a substitution of leucine at position 23 and the CHO moiety may be different. GM-CSF is produced in yeast by recombinant DNA technology and stimulates the production of monocytes, granulocytes, erythrocytes, and sometimes, megakaryocytes in the bone marrow. It also induces mature neutrophil and monocytes to increase phagocytosis, superoxide generation, ADCC, tumoricidal killing and cytokine production (IL-1 and tumor necrosis factor).
GM-CSF will be administered by subcutaneous injection (a shot) into Sydney's thigh. We will wait for about an hour to make sure that she tolerates the dose and the we will be back on our way home. Luckily, this drug our first in a series of four that you will hear me talk about is the least likely to cause side effects. In about 20% of the cases you will see any combination of fever, chills, headache, myalgia, transient rash, bone pain, abdominal cramps, weakness, anorexia, nausea, or facial flushes. So, all in all, this one is not to bad. For the next three days she will receive this injection. Early Monday morning we will then combine this treatment with the administration of the antibodies.
OOoh I have to run to the airport. A friend was in a car accident last night and missed her flight into DFW so I am on my way to pick her up this morning. I will be in touch later.
6:55 AM 2/20/2004 (more above)
Okay, I am back!! Where was I? Ooh yeah, the next three days should be relatively easy - knock on wood! That will give us time to get all of our affairs in order before we start the serious stuff and reenter our lives as hospitalees. Lynley is doing fairly well. She has not had any major scares in the last couple of days - none that she has told me about anyway. She is still dilated and I don't think she can carry the baby any lower without him falling out. I am hoping for everyone's sake that she can make it through the next week before delivering "Baby Rice" but I am not getting my hopes up. It could make for a very interesting week. On another note we had a bunch of people play the "Rice Birth Pool" yesterday. I was thankful to see so many participating but I want to see more this weekend - hint, hint! Perhaps I should threaten to raise the donation for each square as we get closer to the date. That would be a nice gesture for all of those that decided to play early in the game and, as I think about it, it makes sense because it is harder to pick the correct time earlier in the game. I will figure out a way to even the odds. I know there will be a flurry of activity by many of my friends who have decided to wait a little longer to get a better guestimate of when "Rice" will arrive. I think I might make Monty, Chance and Scotty donate $100.00 per square if they wait any longer, additionally, I will no longer consider bestowing "Rice" with the names of "Monty Chance" or "Monty Moncrief II." For all of you others out there vying for your chance to win the brand new Dell computer I am so thankful for your participation. I am having a blast and I only wish that each and everyone could win. On the name front, I have seen a lot of new entries and there continues to be a fight for first place. As of this morning we have had over 40,000 votes. All I can say is - WOW!! Is your favorite name at the top of the list?
The "turkey" stirs. It is time to begin. I am off to my purpose.
SMOOTH SAILING - SO FAR
4:20 AM 2/21/2004
Good news from the neuroblastoma front! Sydney's first dose of GM-CSF went off without a hitch. Our trip to the clinic lasted about four hours which seems long for a little shot but, thankfully, it was nice and dull. Well, the medical part was at least. Sydney, Lynley, and I had a great time playing in the playroom. It was a fairly goofy morning but we all had fun. Sydney's only complaint was that her head was itchy. I am not sure whether this was related to the GM-CSF or the fact that she is not used to having a cool gentle breeze frolicking through the hairs on her newly adorned fuzzy little head. Regardless, that will be something we look for this morning. For better or for worse, we got out of having home health come to administer the drug this morning. We actually feel pretty comfortable with reconstituting and administering the drug. Yes, you heard me, "Super Dad" or "Super Pregnant Mom" gets to play amateur pharmacist this morning. GM-CSF only lasts in liquid form for about 24 hours so we get to mix it each and every morning into solution. I feel pretty confident about it but, just in case, here goes. Sydney's dose of GM-CSF is 135 mcg. I have a vial containing 500 mcg which needs to be reconstituted with 1 ml sterile water. After reconstitution I should draw up exactly .27 ml into a syringe to be delivered to Sydney. Here is my math:
500/1 = 135/x, 500x = 135, x=135/500, x = .27
And who said algebra would not be important when I grew up. I officially apologize to my eighth grade algebra teacher, Mrs. McGrath, for being such a naysayer and quite frankly a pain in the tush. Now that we have that out of the way we should have everything else: LMX2 cream - check, tegaderm - check, alcohol and betadyne wipes - check, 30 gauge needle - check, syringe - check, anaphylectic shock kit - check, epi pen - check, benadryl - check and one certified Blues Clues Band-Aid - check. Yep, that about does it. We are prepared. Now, the only part I need is one cute little turkey with a pudgy little thigh that does not deserve any of this.
Yesterday was another active day on Sydney's website. We had almost 5000 more votes for "Rice's" name and many people joined in to make their best guess at when "Rice" will enter this world. In the hopes of providing you with another clue of when the little snot (and he will be one, he is my son after all) will make his official entry into this world I decided to ask Lynley when she thought "Rice" would be here. She told me to go away and leave her alone. This is an excellent sign that he will be coming quickly. The pregnant mommy annoyance scale is alert level orange. In all seriousness, she said that she wanted him out now and she thinks that he is ready but she is not going to have this baby while Sydney is incarcerated (I think she meant hospitalized) no matter what she had to do. Lynley said that I was not allowed to bet on when "Rice" was going to be here. I am trying to figure out what to do with my donation and I am thinking of an incentive for all of the people that are playing the game. Perhaps I should donate 12 squares and if I should win (and no one else does) I will have a drawing of the people who played the game. Does that seem fair? In that sense, I would be increasing everyone's chances of winning and I would not effect the outcome if someone else did win. Of course, if I won the official title, as well, I would be "Uncle Dad" and I don't particularly like that connotation. I just can't pass up the chance to play the game. It is not fair. It was my idea and I should get to play. I feel like the sick kid who had to sit inside and watch everyone out the window play and have fun. Regardless, if you haven't placed your best guestimate to win the Dell computer you can do it here and if your favorite name still isn't at the top of the "Rice" name list you can vote for it here. Have a great day. I am off to play amateur pharmacist and enjoy a couple of quiet days with my purpose.
Until the next time......
THE CALM BEFORE THE STORM
5:00 AM 2/2/2004
I couldn't sleep again this morning. There is something fundamentally wrong with waking up at 3:15AM on a Sunday morning bright eyed and bushy-tailed. Even I am irritated by my good attitude. Something in my body just snapped and said it is time to go get up and start the day. So, here I sit in the living room plundering through all of my GM-CSF and monoclonal antibody guidelines. As far as I can tell, we are hoping for pain being the only side effect tomorrow. Can you believe I just said that? But yes, that is one thing we know will happen. Other items on the "probably will happen" list are blood pressure shifts and significant shifts with Sydney's electrolytes. I am still hoping that they don't happen and if they do that they are mild changes. This is probably the last time I will write in my diary until after we have received our first dose of 14.18. We are due at the hospital at around 6:00 AM Monday morning and I don't think that I will have enough time to write in my diary before we leave. I assure you that the moment that we know everything is all right I will let everyone know. In the best case scenario that will be late tomorrow afternoon. The 14.18 infusion will last at least 5.45 hours and it appears to be common for the time period to be extended due to complications. Whenever a problem arises they stop the infusion and slow down the rate which means it will take longer for the 14.18 to be delivered.
My mind still has not let me worry about the upcoming treatment. I am still having trouble realizing that all of this studying and preparation is because my daughter is going to have this treatment. Lynley, on the other hand, is fully worried. For some reason, I just can not put myself in those shoes. I know it is going to change and I know it will happen soon. I know that when we actually start this process Lynley will be strong as a rock and I will feel like a giant bowl of Jell-O. It is just so strange but, once again, Lynley and I are complimenting each other. I guess you could call us the "parental ying yang unit." Sydney, on the other hand, is full of life, zest, and all of the wonderful things that make Sydney, Sydney. She is funny, loving, stubborn, spoiled, and absolutely wears her emotions on her sleeves. She is aware that she is going to the hospital tomorrow morning and, in all due honesty, she is pretty excited about it. Her vocabulary has grown and she continues to talk incessantly. She jabbers and jabbers and jabbers. I call her my little twerp. She does not like it one bit. Her usual response is "Sydney not a terp, Sydney is a baby girl (or kitty depending on mood). Daddy is a big terp!" She has fully grasped humor and loves to both tease and be teased. In fact, she also understands sarcasm which just completely amazes me. Call it a character flaw, but one of the predominant ingredients in my humor is sarcasm. The funny thing is that many adults don't know that I am being sarcastic but Sydney certainly does. In fact, if I (or Lynley) make a sarcastic comment to the other Sydney will chime in "Daddy teasing Mommy, Daddy is silly, Daddy is a big terp" which usually gets both Lynley and I in stitches. It really is amazing. She even tells her own jokes and, as always, she is a little sneak. For instance, whenever I am putting on her shoes and socks she will try and hide them from me. She thinks it is great fun and you would be amazed by the belly laugh it produces. Even considering everything that has happened in her short life to date I would have to say that Sydney is one happy little girl and there is nothing that could bring more joy to my heart. I am definitely a lucky, lucky man.
Well I had better be off. There is much to do today to prepare for tomorrow and if I don't get some work done today I will have to fire myself. I will check back as frequently as I can. I hope everyone continues to play both the "Rice Birth Pool" and the "Rice Naming Game." We check the results frequently and I know it will make the time go by quicker as we are incarcerated (Oops!! Lynley is getting to me. I mean hospitalized.). Most importantly, however, keep a sweet little girl in your prayers because whether her Daddy realizes it yet or not, she needs all she can get. God bless. I am off to a very important purpose.
3:15 PM 2/23/2004
DAY 1 MoAB
Well, we are finished with the first day of antibodies. Sydney is sleeping and heavily medicated. She endured some pretty intensive pain but, thankfully, avoided some of the other side effects. That is about all I feel like saying now. It has been a long day and I don't like seeing my baby in pain.
POWER - A CUP THAT CAN BE HALF EMPTY OR HALF FULL
5:20 AM 2/24/2004
Okay, a somewhat full night of rest and I am back in the game. I want to try and be as accurate as I can be about this whole ordeal. When trying to figure out exactly what to expect with this particular treatment I found that families that had participated in it were few and far between. The good news was that everyone I found was a success story. So, I think it is important that I try and capture exactly what this experience is like. The one thing that I can tell you is that I have, once again, proven that knowledge is key and for me, at least, it served as a solid foundation for me to stand upon. I suppose there is a balance between knowing what to expect and not knowing anything at all. Both have their own problems. I do not know whether it is the experience of having ridden this journey for a long time that makes this process easier or whether it is the fact that I have learned to prepare and that I have become more comfortable with the science but I certainly feel much more prepared in the height of the drama.
It did not take long to get shocked back in the world of living minute by minute but it did take me somewhat by surprise. I think it was a result of the fact that I never subconsciously made the connection that this was going to happen to my daughter. I do not know. It is hard to explain. Perhaps, it is the fact that I am so positive about our future. Perhaps, I am naive and I am somehow, unbeknownst to myself, protecting myself by not accepting reality. Perhaps, my cup is always half full. But, I never assume the worst is going to happen. So, when things get tough I have this belief that if I am prepared I will be able to save her. I believe I know my stuff and if something goes wrong we will catch it, treat it correctly, and Sydney will come out the other side. You see, this is something I can do. I still have not found the magic wand that will make her cancer go away but this I can do. It is tangible and it gives me purpose in a world I can not control. That sounds backwards doesn't it. I am trying to control the uncontrollable - or is it? Regardless, it gives me purpose and it gives me a sense that I can make a difference. It gives me power.
Now that I am looking at yesterday through history I can say that, for me, it went better than expected but it was not easy. I think this is one of the harder treatments that she has been through. One of the reasons is that we can see the effects so quickly. With chemo we would wait for days to see the effects. With this, we see them almost immediately. We took a beautiful, jovial, happy, little two year old and turned her into a writhing, fairly incoherent, subject of pain in less than an hour. Pain was the issue of the day but we knew this going in. We knew that it would happen and we knew that it would take time to figure it out. We started the antibodies at 9:00AM and the pain set in quickly. She would cry out frequently and flip flop on the bed. She was obviously uncomfortable. We have heard the pain described as neuropathic. They say that there is intense belly pain complicated by an all over feeling of dull pain. Some have said that the allover feeling is similar to a bad case of the flu with a fever. The kind where you just cannot get comfortable no matter what you try to do. Drugs can manage most of the pain but there is some element of it that does not go away. It is this discomfort that kept Sydney flip flopping on the bed even when she was heavily medicated. We started out with the intense belly pain. We had to increase the continuous infusion of Fentanyl slowly so that we would not induce blood pressure problems in a situation that was likely to cause them already. In the beginning we were able to manage a portion of her pain with boluses of Fentanyl but five to ten minutes of every quarter hour where spent with Sydney writhing in pain. It would be two hours into the infusion before we were able to get the medication to a point that this routine would go away. After that, Sydney slept much of the time away. She was uncomfortable and she would still cry out frequently but it was not from the pain as much as the fact that she could not get comfortable. It is this uneasiness and restlessness that I think was due to the secondary pain or ache. After the infusion we expected Sydney to snap out of her funk rather quickly. We expected that she would return back to normal within a few hours but, alas, we were wrong. She would not come out of her funk for the remainder of the day. She became more comfortable but she did not return to herself. At about 7:00 PM we had completely weaned her from the Fentanyl and she slept comfortably through the night. In about ten minutes we will be starting the process all over again. We will have four days of this in total. Today we will take what we learned yesterday and try and get her more comfortable more quickly and, once again, pray that we do not see some of the other effects. In retrospect, I am pleased with how yesterday went. It was as planned with no surprises, but I do not know that Sydney feels the same way. This is a tough road for her and, once again, I wish that I could be the one to endure it but life does not always turn out the way we would like it. For the time being, I will do what I can do. I do have power and I do have a purpose.
DODGING BULLETS WITH CYBIL
4:50 AM 2/25/2004
Well round two of our four antibody administrations has been completed. I am happy to say that yesterday went much better. Sydney woke up about 6:30 AM yesterday morning bright-eyed, bushy-tailed, and down right normal. Yes, Sydney had returned. We spent about an hour frolicking through the bone marrow unit and eating breakfast before another day was started in earnest. There seems to be a small window of opportunity in the mornings before the daily druggings start in where she is completely back to herself and happy. At 8:00 AM we started her Fentanyl drip. Today, or yesterday in this case, we started the Fentanyl dose at where we left off the day before and within about thirty minutes she was feeling no pain - figuratively. Yesterday would start off much better. In fact, the first couple of hours of the antibody administration went off with out incident. No pain and no Cybil.
I guess I should tell you about Cybil. Cybil is what we call Sydney's evil twin. We developed this name during radiation when she would wake up too early from her NembuRAGE (or Nembutal for you medicos) sedations. So, since those days, whenever our sweet little princess is displaying rage or evilness we have blamed it on her alter ego, Cybil. Cybil generally comes out when our sweet Sydney is under narcotics and the change is like night and day. Generally, under Fentanyl she is not violent but, she is mean. She does not want me to leave her crib and will cry out anytime I have to run to the bathroom, yet, when I am by her side she will sit there and hit me. She will not strike me hard but she will give me that ever familiar look that a two year old gives when they know they are doing something wrong and she will continue to test my limits. She knows she is not supposed to hit me so she basically just taps me with her fist with that look in her eyes. She is testing her boundaries. It is a difficult position to be in because if I leave she will cry in hysterics but if I stay I encourage the behavior. It only happens under narcotics so I sometimes even question how to deal with it. It does not happen all the time and usually if I deal with it fairly sternly she will turn on the charm and become Sydney again. The episodes are usually followed by the statement "Sorry, Daddy!! Cuddle me." and that is the point in which I know Cybil has left the building. Regardless, for a change, yesterday Cybil did not come out. She was pleasant and fairly playful even while fully medicated.
After about two hours signs of pain started to reappear. We were able to effectively control the pain with the happy button (the PCA by her bed which allows us to deliver boluses of medication to her as needed). For some reason she hates the button so we have to push it while she is not looking. However, within minutes of our sneakiness the pain subsides and she is back to her comfort place. We found ourselves delivering these boluses pretty routinely throughout the afternoon. Once again, she was uncomfortable but compared to the day before it was much more tolerable. This was another day with pain for Sydney but it was much better by the order of magnitudes.
We were woken this morning at about 3:30 AM by the nurse. Sydney's glucose was off. We would need to get her to drink some orange juice to see if we could bring her back within normal limits without medical intervention. After about thirty minutes of coercing her to take the orange juice out of a 10 cc syringe we had officially finished the four ounce cup. As of right now I have received word that the orange juice did the trick. Her labs came back, this time, within normal limits. Situation averted. Both of my girls are now asleep so I think I will wait until they wake up to deliver the good news although I might have to come up with a good story for Lynley. She believes that orange juice is the cure for just about any problem. Got the sniffles - drink orange juice. Got a headache - drink orange juice. Stub your toe - drink orange juice. This will just add fuel to the fire. I will have to come up with some other explanation as to Sydney's glucose recovery or I will be drinking orange juice ever minute of every day for the rest of my life.
This morning Lynley has had more medical indications that she is closer to delivering "Rice". To spare her dignity I won't be any more specific but lets just say that things are starting to progress. She is also starting to feel back pain. She is not having contractions this minute but it will be interesting to see how she feels when she wakes. She has an OBGYN appointment today so it will be interesting to hear what they have to say. There are no guarantees but if you have not played "Rice's Birth Pool" you might want to do it sooner than later.
This morning I finally had the opportunity to go through Sydney's medical charts in earnest. I have discovered why we had to repeat the tests. Sydney has been upgraded to complete remission (CR) from very good partial remission (VGPR) The only signs of disease left in her body is a slight asymmetry in her left proximal humerus that showed up on her bone scan. This is one of the metastatic sites that originally showed up on all of her scans at diagnosis. It has continued to get better although there is apparently still a little damage left to be undone. This is great news but it by no way means our fight is over. It does, however, mean we are winning. Being in CR at this stage bodes well for Sydney's future but is in no way a guarantee that we have one. To put it in numbers: When we were diagnosed Sydney was given a 10 to 30% chance of three year event free survival (EFS). This means that there is a 10 to 30 percent chance that she would survive treatment and not have a relapse within 3 years. Just so you know you are not considered cured of neuroblastoma until you have been out of treatment for five years and have not had a relapse. We now sit at the 50% mark. This means that Sydney has a 50% percent chance of surviving 3 years. I know that does not seem like a lot for how well she has done and everything that she has endured but that, unfortunately, is the fact. That is also the reason we are continuing to fight as hard as we can. The goal of the monoclonal antibody trial that we have entered is to raise her odds of 3 year EFS to 65%. It is not proven that it will indeed work but that is the purpose of why we are here. We have to do everything that we can. There simply is not a silver bullet yet. That is the trick and that is my purpose. We will continue to fight and dodge bullets until I can find the silver one.
GRAHAM WATSON DUNGAN (RICE TO YOU AND ME) HAS ARRIVED
6:27 AM 2/24/2004
Graham Watson Dungan a.k.a. "Rice" has officially made his entry into this world. At 7:02 PM Wednesday, 2/25/2004 Lynley gave life to a bouncing baby boy of 6 pounds 7 ounces and 19 inches long. He is healthy and happy and seems to be fitting right into our unique lifestyle. Mommy, too. is doing well. They are already surrounded by the comfort of our home and are excited that Sydney's treatment is over and that we will be home soon as a family.
The past two days have been better for Sydney. Her pain has been managed and although she is still uncomfortable much of the time it is far better than the days before. She has officially finished this round of antibody treatments and as long as she is not showing any lingering signs of pain she should be going home today.
I on the other hand have met my match. I feel sickness coming on and am doing my best to ward it off. I could think of nothing I would rather do than sit down and put all of my thoughts down on paper. I have so much I want to tell both Sydney and Rice, but at this particular moment my head is simply tool filled with congestion and pain to get out a single thought. I know I will have much more time once we get home and I can get a moment of rest.
There is one story, however, that is too special to wait. Sydney had her first introduction to her baby brother last night. At 24 hours of age exactly Lynley and I brought Rice up to the hospital to meet his big sister. Sydney had recovered from most of the pain of the day and was beside herself with anticipation. As I walked through the doors of her hospital room she had already made a bed of blankets by her side for her baby brother. She was adamant that we put him beside her. She held is hand, she patted his head, and she snuggled up real close to her baby brother. There they sat and no matter what we tried Sydney had absolutely no interest in being separated from Rice. It would be a couple of hours before the two could be dislodged and Lynley could take the little one home. We are a family and I look forward to spending some time with them all today at home. Besides, since I have only spent a couple of hours with my son he is showing signs of holding a golf club incorrectly. I have worked with him by placing a straw in his hands and he is clearly using an interlock grip instead of an overlap. These is a basic fundamental of golf and I must correct it soon if he is going to have any chance at beating Tiger Woods. It now appears I have an extra purpose.
On another note I hope to write something more clearly in the near future. As I mentioned earlier I have some recovering to do but I do want to thank everyone for their support. It is indeed a happy time for the Dungan family right now and it has been all of those that have supported us throughout this journey that has gotten us to the point that we are today. Thank you for your prayers, your love, and your support.
Good bye for now....
Until the next time......
Monday, December 1, 2003
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