Antibodies (3F8) Year 1 (1/2005-12/2005)

Dad's Diary

Antibodies (3F8) - Today

Hello and welcome to my diary. I think I should probably offer a disclaimer to those of you who do not know me very well. I am irreverent, sometimes egotistical and most definitely sarcastic but ultimately I am a normal average human being. I have three purposes for this diary. First, this is therapeutic for me. It allows me to get out my feelings and deal with my own pain. As a result, I am better prepared to care for Sydney, to care for my wife and to care for my family. Secondly, as a parent of a child with cancer it is my hope that this may help other parents in the same situation. I know that I am searching for the “right” way to feel and I am beginning to understand that there is no such thing. For you other parents I hope you find some comfort in my words and feelings knowing that there is someone out there that feels the way you do. Lastly, this is my gift to Sydney on her eighteenth birthday.

I will write how I feel and what I think. It won’t be appropriate or polished and definitely not politically correct. I have no intention of swaying opinions or influencing people. It is my words and how I feel. It might make you happy. It might make you sad. Knowing me, it might even make you mad. But it will make me feel better and hopefully it will give me the strength to deal with my own pain.

At this point I really don’t want to discuss this diary. I don’t want to know that you are reading it. It is still a little too personal and close. So please do not talk to me about it but if it makes you feel better then I am glad.

So here we go……

6:30 AM 1/3/2005

We received some preliminary bone marrow results a few days ago and although I am happy with the results I have learned to be somewhat skeptical until the final pathology is in the books. Dr. Kushner called to let us know about the preliminarily clean marrows. I asked what further tests they would be running and he said that they would be dependant upon the final pathology. It will probably be several more days before we receive any further news.

I find myself conflicted. I guess the biggest problem is trying to figure out an answer. I don't particularly like the feeling of not knowing and I am frustrated with the research. Over the past few weeks I have poured myself into the science. With the difference of opinions and inconclusiveness on the tibia this whole relapse thing really comes down to the immunocytology report. My research, however, has left me with more questions than answers. This feeling is somewhat new to me in the world of neuroblastoma. I have always been able to grasp the medicine. I have been able to read through the research and develop an informed opinion about each treatment step and occurrence, but this, this is different. When Sydney first relapsed (if she did) I took the immunocytology report to be the "word." I didn't muddle my mind with false-positives and false-negatives. I just excepted the test results and excepted the technology as being a more accurate test than standard morphology. What I have found out though, is that it all depends. Immunocytology and another test, RT-PCR, are more accurate (for the most part) than standard morphology. If you comb through the research you will find that they can be capable of detecting disease somewhere between 1 in 10 to the 5th and 1 in 10 to the 6th cells. But, you will also find that they can be flawed with both false positivity and false negativity to a small degree. This is not a huge problem unless you are dealing with an extremely small amount of disease (such as 27 stupid cells in 2 million). So, here are the problems:

This test is not black and white. Immunocytology is highly complicated and time consuming. You do not just put a drop of blood in a machine, wait for some lights to flash, and the wait as a report spits out the front. It is an extremely complicated mixture of test solutions, materials, timing, and equipment that when used correctly and in the proper sequence can produce a highly sensitive test result. However, if any of these piecy parts are not correct, they are flawed, or in the wrong order false results can occur. It depends on the type of immunoflourescense, the type of antibody, and a hundred other variables that help to ensure accuracy and, even at that, many believe that the technology is theoretically flawed and needs further scrutiny. Many labs not only run the immunocytology test but then confirm the resulting immunoflourescent cells through standard morphology. In short, it is a pretty good test but there is certainly room for error. After all, regular people, those unafflicted with neuroblastoma, can have a positive finding by immunocytology. That is why the positivity threshold is set at five cells. There is an argument that it should be set higher. Both of the tests mentioned above are subject to cell selection fallacies in that they have the habit of picking up non-neuroblastoma cells due to nonspecific binding of the secondary antibody, avidin, biotin, or alkaline phosphatase. I don't want to lead people not to trust immunocytology. That is not my point. It can be accurate and can be an incredibly useful diagnostic tool. But, it is not "God's Word" and it should not be used in a vacuum. You need more than a positive immunocytology finding to confirm the actual existence of disease.

Next, Dr. Kushner said something interesting that has left me pondering. He said that the body, and especially one with previous antibody treatment, has the ability to deal with a certain amount of neuroblastoma. His thoughts on the positive immunocytology report was that the test could have picked up this response. I don't fully understand his statement but you can bet your boots that I will follow up with him.

Well, enough science, today we will be meeting with Dr. Eames in the clinic. Sydney is excited to see all of her "friends" and it will be really nice to get Dr. Eames feelings on all of this. We really value her opinion. She is part of our team and our family and her expertise and scrutiny will be incredibly valuable. We are very lucky to have such dedicated teams both here and in New York because this purpose thing sure can be tricky.

5:15 AM 1/4/2004

We have achieved a holding pattern. Dr. Kushner and Dr. Eames spoke yesterday morning and the official results from the MIBG and the bone marrow aspirates in New York are negative. We are still waiting on Sydney's results of the bone marrow biopsies and that of any other tests that Dr. Kushner will decide to run on the aspirates. Until then we will wait. We are also waiting on the final results of the bone marrow's from Dr. Seeger's lab that were taken just before Christmas.

Dr. Eames seems to be on board with everything that is transpiring. I imagine that the plan going forward actually won't depend a lot on all of these results. We discussed everything with her at length yesterday. I even opened a discussion up on the original immunocytology reports. Although the October results, 27 cells found by immunocytology, were confirmed by the head lab technician and then the report evaluated by Dr. Seeger, we still do not have many of our questions answered. Dr. Eames has been waiting for a phone call from Dr. Seeger. to discuss the results in more depth. Of importance are questions like "What is his impression of the test results?", "What would he do given the results?", "Were the immunocytological results confirmed by morphology?", "What is the likelihood of the cells found to be some kind of immune response or false positive due to non specific binding of the antibody?"

Yesterday, Dr. Eames was quick to point out the fact that Dr. Seeger's lab was extremely well respected. She confirmed all of my findings regarding immunocytology and was tickled by my original image of the "immunocytology machine" with flashing lights, beeps, and a report that was printed out the other side. Although I would love for them to pull back up our results from October, look at them, find a false positive of some kind, and then tell us that the results were false, I know that is not going to happen. Unless something is found now (not that I want it to), it is likely that we will continue to operate in a vacuum. Given that, I imagine that whatever is found or not found from all of these tests, Sydney will continue on with therapy. My best guess is that she will have radiation of the tibia followed by anywhere from 6 months to 2 years of the 3F8 antibody therapy in New York and Accutane.

I am still hoping and praying for negative results. We still have many hurdles to overcome. But, if her aspirate results from Seeger, her bone marrow biopsy results, and any further aspirate testing from Kushner show no signs of disease, there is significant hope of overall survival. There is a much better chance at life. This difference is everything in the world to our family, both mentally and physically.

This morning I am going with Lynley for her sonogram. Yep, we will be finding out whether it is a boy or a girl. I really have no idea. I couldn't even guess and to be honest I don't really care. I am just looking for healthy - happiness will be my purpose.

3:56 AM 1/5/2005

Okay, okay, okay!! Just when I have the most to talk about I have the least bit of time. So, here goes. My daughter was moved to a big girl bed, but for some odd reason has developed a habit of not sleeping during her naptime and instead she is sneaking around upstairs and hanging her panties on the door knobs of every door we have. Second, Lynley, Sydney, and I went to the baby doctor yesterday to see what was hiding in Mommy's belly. The good news is that everything seems to be healthy and we know the sex. Sydney is extremely happy with the outcome and is very excited to have a baby --- Snicklefritz. Yep, when asked what Sydney wanted to name her baby SISTER sitting in Mommy's belly she chose Snicklefritz. And, I might add, she pronounces it perfectly. Lastly, the official results are in from Sloan. No Evidence of Disease. Dr. Kushner called us yesterday to give us the good news. However, he also called to give us his advice on what was the next best course of action. It appears to be a consensus with both the doctors in New York and our doctors here. Everyone seems to believe that it is in Sydney's best interest to enter the 3F8 antibody trial in New York. After much discussion Lynley and I have decided to pursue the treatment. We will be starting in about twelve days.

So, I have a twerp with no signs of disease that chooses not to sleep and instead hang underwear on door knobs who I have to figure out how to get to New York in 12 days for her first treatment which will last approximately 2 weeks. I am going to have to handle this one thing at a time. This purpose stuff sure is chaotic.

4:13 AM 1/6/2004

Boy did I get a bunch of questions yesterday. I guess that will teach me not to write short entries in my diary when we have major things going on in our life like hanging underwear on doorknobs. Seriously, I was flooded with - "Hey Mark, you just found out Sydney has no evidence of disease, why are you continuing to treat her?" I guess everyone was expecting us to say "We just found out Sydney has no evidence of disease. We're going to Disneyland!" It brings up a great question though and one that Lynley and I have labored over. Yes, Sydney shows no signs of disease. Let me correct that. As of one week ago, at that point in time, she had no evidence of disease. Unfortunately, that does not mean that she did not relapse in October. It does not mean she is cured. It only means that they could not find disease in her body last week. It is great news in that if she did relapse she probably responded to the high dose rounds of chemo that she received. Additionally, we are still awaiting some of the "experimental" test results. They may or may not show disease but even if they did it would not be enough to officially declare her as a relapse patient necessarily. You see, in the world of neuroblastoma there are specific criteria as to whether you relapse or not. It is not black and white. You have to have results from several tests show disease and they need to be tests that are commonly accepted in the NB world. There are no hard and fast rules when dealing with these small amounts of microscopic disease. The common belief is that those few cells found by some of these "experimental" tests (such as immunocytology, RT-PCR, FISH, etc.) will eventually lead to an official relapse (by whose rules I do not know) but there is no hard and fast evidence. There I go getting technical again.

The point is that we do not know whether Sydney officially relapsed or not. We will never know. Even if she relapsed, she relapsed so "little" that many would not consider it a relapse. So, in short, we are dealing with an unknown. The belief is that because we are dealing with an unknown we have to act as though she had relapsed, carefully considering her future, her past, and her current quality of life. This is what I can tell you.

Sydney's neuroblastoma was bad, not only because it was stage 4, but because it was a bad type of stage 4. This puts her in the worst of the worst category. Not only did she have bad disease all over her body but she also had an extremely aggressive form of neuroblastoma. If she did relapse, the two rounds of chemo would not be enough to buy her much time before relapsing again. It is great that she seemed to respond to it but, as far as her long term chance of survival is concerned, it really has little effect. If she did relapse, this was not enough to keep her disease at bay and certainly not enough to cure her. So, with that in mind, we know we have to do something else. More chemo would probably not do her much good and it would come at some fairly severe risks. With as much chemo as she has had she is far more likely to have some fairly significant side effects such as a secondary cancer. Another option would be an oral low dose chemo, like Accutane or Fenretinide, but our doctors do not think that if this truly was a relapse that it would be enough to protect her. Radiation would be another option but we must realize that she had metastatic disease. In other words, the little cells could be all around her body. In order to get it all we would have to do full body radiation which comes with significant long term effects. So that, too, is not an option. So, when you take this all into consideration. What has the most punch with the least amount of side effects. If she did relapse, what has the best chance at producing a long term remission. And the answer is: the 3F8 treatment. For Sydney it will be a breeze in comparison to what she has had before. Better yet, when we are not in New York she will be able to return to school and her friends. She will be able to live life.

Now, if Sydney did not relapse, why are we doing this? Well, we may be curing her. Theoretically, the doses of chemo that she received could have obliterated the immunity benefit that she received from the 14.18 antibody treatment. This could have been the thing that saved her life. By doing the 3F8 we are "filling her up" so to speak.

Lastly, put it in this perspective. Sydney had no evidence of disease before we entered transplant the first time, before she had radiation, before she had the 14.18 antibody, and before the Accutane. We were lucky but these treatments are also best used in a minimal disease setting. In other words, they work better with less disease. What we are doing now is really no different. We are giving Sydney her best chance at life and happiness.

Nobody said our purpose would be easy.

4:44 AM 1/7/2004

I think we might have finally worked out the putting underwear on doorknobs thing. I have had two full days without going upstairs and finding pink and purple Dora the Explorer underwear on every door knob and cabinet door upstairs. I still haven't figured out the purpose of the activity and when asked Sydney will not provide me with an adequate answer. I guess that it just goes to show that even with years of experience I still have difficulty understanding the female mind.

The last time I took Sydney upstairs and put her down for her afternoon nap I was very clear. I gently laid her down on her "big girl" bed. I placed kisses under her pillow. I put a cup of milk between her the pillow and the wall. I covered her in her comforter. I gave her favorite blanket to her. I went to the closet and got the "bad dream spray" (for those of you that don't know, Glade Air Freshener decorated with pink see through material is good for both keeping the bad dreams away and repelling monsters as well as covering the funk that comes from the diaper pail.) I spritzed the room and returned it to the closet. I took little Mommy and Daddy and placed them in Sydney's hand (that way we are always their if she needs us - they are imaginary). I turned on her sleepy music and finally I kissed her noggin and told her to go to sleep. Of course, she replied with "But I am not sleepy." To which, I responded "Fine you don't have to close your eyes but you do have to take a rest." I then explained that she was not allowed to decorate the upstairs, she was not allowed out of her bed, and she could not play with her toys. I let her know that I was sneaky and that I would peak under her door to make sure she was being a good girl. That seemed to do the trick and the next thing I knew I was back downstairs working diligently on my laptop.

About 15 minutes of silence past and then I heard it over the monitor. "Daddy - Daddy - Come here please!" Yikes! She said please! This was going to be interesting. I set my laptop down and went back upstairs. I opened the door and found her snuggled in her bed. "Daddy," she said , "you didn't check on me." I said "You were being a good girl I did not have to." That stumped her into silence. I then kissed her forehead goodnight and made my way to the door. "Daddy, what are you typing?" A moment of silence passed while I tried to process the information. "Sydney, how do you know Daddy was typing?" There was a look of shock on her face. I had caught the twerp sneaking around the house during her nap and she knew it. She smiled and said "Daddy, I am sneaky too." I had a feeling of massive accomplishment. I had outwitted my 3 and a half year old. I was proud. And then, after a minute or so, I realized I was proud for outwitting a 3 year old and felt pretty stupid. I told her to stay in her bed. I told her to go to sleep. I went back down stairs. I went to the store room and I found the child gate. I put it on her door.

I haven't had anymore issues with my sneaky little snot. It has been quiet.

I kind of liked it the other way. I don't think I will use the gate today.

I love my purpose.

5:00 AM 1/10/2004

Last week we had a little scare with Snicklefritz. It seems that the ultrasound technician saw something a little sinister. The term they used was ecogenic photocyte (I think, and I am not responsible for spelling) Basically, it is a small spot on the heart that shows up on the echo of the ultrasound. From what Lynley and I have come to understand it can be a sign of a couple of things, a hole in the baby's heart, a heart defect, or down syndrome. This, of course, sent chills through our bodies. With everything else we have going on this was the last thing we needed. The nice thing was that everyone moved quickly to help us get the problem looked at. Within a day we had an appointment with a specialist to investigate further.

The doctor, whose name escapes me, had a great sense of humor and spent quite a bit of time telling us exactly what he was looking at. Luckily, with all of Lynley and I's experience at looking at ultrasounds we could make just about everything out. Sure, enough, when the heart would beat we could see the little photocyte dohicky. Our doctor carefully measured the heart looking for any abnormalities. He then explained that the structure of the heart was so good that he did not think that the heart had any defects or holes. He then measured the fold on the back of Snicklefritz's neck, the length of the middle bone on the little finger, the length of her arms and legs, the size of her head, the kidneys, and several other indicators of down syndrome to rule out any other abnormalities. By the end, his statement was that given the size of the baby it was his opinion that we were more likely to give birth to an orangutan than we were to a child with down syndrome. He went on to explain that many children have ecogenic photocytes and although they are indicative of the problems discussed before many times they turn out to be nothing. He told us not to worry and that he was not particularly concerned but that he would like to see us again in a month or two just to follow up. I can not tell you what a relief his words were. I felt like I exhaled for the first time in more than 24 hours. We are not completely out of the woods but we can start to see light through the trees.

Now, onto our trip to New York. Just about everything is in place. We have signed consents and made arrangements to get some of her treatment drugs provided here at Cook's. We officially begin our treatment on Wednesday here at home. We will then fly to New York on Sunday. We will be treated in New York for two weeks and then on the 30th we will return home. We are working out the details with the Ronald McDonald House (RMH) in New York for a place to stay. The cost per night at RMH is $20.00 per night which is far more feasible than the $200 per night we were charged for staying at the Helmsley Medical Tower. If it does not pan out we do have other options but all are well in excess of $150.00 per night. But those options, when you consider the fact that we will be traveling to New York and staying there for two weeks each month for at least 4 more months (and maybe as many as 10), are not really options. Additionally, we hope to find out today if we qualify for any free or discounted flights for this trip. Just in case, we have already booked full fare (not fair) flights just to be on the safe side. The problem we run into is based on our income. Our annual income is to high to qualify for most aid which makes me mad because they do not seem to take into consideration the fact that we have had medical bills that more than offset our income.

This weekend we went shopping to get fully outfitted for our trip to New York. We got rain covers for the strollers and fleece covers for the kids that fit inside the strollers. We were also lucky enough to hit BabysRUs on a 70% off sale and now have Dudely fully outfitted for the New York climate. I also ordered a stroller/car seat/airplane seat for our trip and it should arrive in the next couple of days. This convenient little contraption will save us needed space and lugging when traveling to, from, and around New York City. All in all, I think we are fairly well prepared. Let's just hope that Corporate Angel Network comes through so that we can get there and back without having to sell off one of the kids. Dudely sure is cute but he won't go cheap.

Oh, you know I'm kidding. My purpii are too important to me. But Lynley's cats, they are a different story. Just make me an offer.

6:04 AM 1/11/2005

Hmmm. No offer in the guest book for the cats. Dang! Oh well. Yesterday was another busy day of finalizing the details for our trip to New York. Unfortunately, Corporate Angel Flights could not come through for us. Well, that is not entirely true. They could get us to New York but we would have left this morning and they did not have a flight back. So, luckily we had backup flights. Lynley and I have sent out about six applications to different organizations to obtain flights in the future. Unfortunately, for people that have to travel with children out of medical necessity there aren't a lot of short term solutions. Many of the organizations require letters from physicians (PCP, treating oncologist, and local oncologist) and a complete autobiography and financial background and the results take 1 to 2 months to see if you are even accepted. It does not work to well for people that need to get somewhere now. I received several email from families that were in our same position, wondering how they were going to get their child to a treatment facility. They wanted to know what we were doing. So, to save a bunch of emailing, I am going to print it here.

The first place I went was the Patient Travel Helpline (1-800-296-1717 or http://www.patienttravel.org/) This group will provide you a list of resources to obtain travel assistance. They gave me a list of about 6 places to contact. I could reprint the list here but, honestly, my notes are pretty messy and about the only thing that I have that is correct are the phone numbers. Either way, here are a few that they gave me.

Operation Lift Off - 1-888-354-5757 - They require some paperwork but they are able to put together flights pretty quick (7 days from receipt of the paperwork). The forms can be found on their website at http://www.operationliftoff.com/. They typically use donated AA miles.

Southwest Airlines will provide up to one free round trip (per year) to families needing travel for medical reasons. They can be contacted at 214-792-4103.

Mercy Medical Airlift can also work fairly quickly and they can be contacted at (888)675-1405.

NWA has a program called Kid Cares and they can be contacted at (612)726-4206. This one takes a while.

American Airlines has a program and they can be contacted at (817) 963-8118.

And finally, Miracle Flights (and something I cannot make out) can be contacted at (800)359-1711.

All of these should work but these organizations were ones that could help us because of our travel needs. I would suggest contacting the Patient Travel Helpline first to get your very own personal list. Oh, and another piece of advice, apply for these programs sooner than later, even if you don't know for sure when you need to travel. It takes quite a lot of time and paperwork to get through the process and when you need them everything will already be done for you. Because of the timing with Sydney's treatment we did not have the luxury of time. Had I applied for these when we first got the inkling that we would be traveling to New York I would probably not be scrambling now.

Jackie made a suggestion of donating airline miles to us on the Guestbook. She even appropriately named the program "Travel for the Twerp" which I really like. I want to tell her and everyone how appreciative we are. Unfortunately, you cannot donate miles directly to us but if you have an extra 25,000 miles and you are interested in helping us out we can make arrangements to use those miles. Basically, how it works is we make arrangements for the flights and then we make a three way call to you and you purchase the ticket with your miles. So, unfortunately, anything less than 25,000 miles won't work because we can only use one person per ticket. The going rate, at least on American, is 25,000 miles per ticket. Regardless, if you are interested we are incredibly appreciative. I have no idea how many we will need or how many of these organizations will come through for us. I just know that the thought of buying 2 or 3 tickets to New York every month for the next couple of years will be daunting and, unfortunately, we will never know 21 days in advance if we will be traveling or not. Thank you, thank you, thank you for your help.

On another note, we are still waiting on results from Lynleys Triple Screen. Okay, now it is known as the Tetra screen. This test gives us an indication of the overall wellbeing of Snicklefritz and the risk of having a child with a genetic anomaly such as Down Syndrome. We are anxiously awaiting the results. I keep having this strange image in my head of a lab technician dropping a drop of Lynley's blood into a fish tank. If the tetras' (fish) fluorescent line on their sides turn red you are at greater risk and if they turn blue then you are okay. I am pretty sure that is not how the test goes but the image keeps me laughing instead of biting my nails. Hopefully, today we will get the results.

Well, I have to run. There is much work and forms to fill out. Another busy day of purpose which, by the way, is far better than one without.

5:07 AM 1/12/2004

I am proud, relieved, and happy to announce that all of the little tetras in the aquarium at the OBGYN's lab maintained their blue stripes. Yes, Lynley's Tetra screen was normal. Once again, this screening test was just to detect risk but it still feels much better all the same. I remember the stress that we went through when Grahams screen showed up positive. We did not find out until many days letter that the screening results were wrong due to an error in estimating the gestational age.

I received several email yesterday about the screening test. Many were from mothers that had positive results but turned out to have wonderfully healthy babies. It kind of makes you wonder if all of the worry of the screening tests outweigh the benefit. I suppose they do but it surely seems to come with an ample supply of grey hair. I actually received two email from doctors who not only explained what the test was but also went into great depth of how the screening was performed in the lab. I really appreciate the information. They know I love the facts. But, in this case, I still prefer my image of a fish tank with fish in it. I am going to stick with that theory until I see it for myself.

Yesterday, also brought a tremendous amount of information about flight assistance. There were about fifteen or twenty suggestions in the guestbook on top of the ones that I listed in my diary. I am going to make a list and publish them on various web sites so that parents will be able to find them more easily. You will find that each one has its own unique guidelines, rules, and limitations but help can be found out there if you are willing to do the paperwork. Most of the programs limit their assistance to one trip per year. This means that you have to fill out an application, obtain a letter from your doctors, and jump through several hurdles for each occasion that you need to fly. But, hey, it is assistance, there are organizations willing to help, and it sure beats the cost and financial burden of last minute plane flights for the family.

On a totally unrelated note, I have discovered the age at which children decide that they know more than their parents. For your information - it is 3 and a half. Last night I was sitting out on the porch swing next to the pool with Lynley, Sydney and Graham. We were just having a relaxing evening outside trying to enjoy the weather before it turned cold again. As we started swinging Sydney decided to jump off the swing in mid air. Both Lynley and I's hearts jumped and we both shouted at Sydney and told her not to do that. She landed on her feet ran back to the swing and hopped back up. A few minutes later she did it again. We stopped the swing and I got off to talk to her. I said, "Sydney, don't do that. Don't you know that you can hurt yourself that way?" She said, "No, I won't. I am pretty and I know stuff." Lynley (trying to keep a straight face) said "Sydney, Daddy and Mommy know not to do this because we hurt ourselves jumping off swings when we were little. It is very dangerous." Sydney quipped "No it's not!" I chimed in with "Sydney, do you think you know more than Mommy and Daddy?" She looked at me straight in my eyes, displayed a huge smug grin, and nodded her head YES! Little twerp if you ask me. Neither Lynley nor I could contain our laughter. We could not believe our little princess, our baby girl, was such a grown up snot. The rest of the night she obeyed the rules. She did not jump off of the swing anymore. She did what was asked of her and we had a great family evening. But, it still haunts me to this moment. Was I this twerpful? Was I such a know it all? Surely, not!! (Don't write in the guestbook Mom the question is rhetorical.)

I knew my purpose was important. I just did not know it thought it was smarter than me.

4:56 AM 1/13/2005

Yesterday, I forgot to mention that we were officially starting treatment under our 3F8 protocol. Sydney is participating in the "Phase II Study of Anti-GD2 Antibody 3F8 and GM-CSF For High-Risk Neuroblastoma." In layman's terms, antibodies are made by the body to attack tumors and to fight infections. 3F8 is the name of one kind of antibody. It is made by mice; it can attack neuroblastoma in people. 3F8 has been used safely in thousands of patients, and it has killed cancer cells in some patients. One way it kills cancer cells is by causing the patients own white blood cells to attack the cancer. Granulocytes are one kind of white blood cells. GM-CSF increases the number of granulocytes in people and it makes granulocytes that are able to kill the cancer cells.

Sydney officially started her subcutaneous shots of GM-CSF yesterday. We have used GM-CSF before in the ch14.18 trial and you have heard me talk about G-CSF, a different drug, many times. We gave Sydney G-CSF to help her body and white count recover after chemotherapy. The two drugs are very similar but they have one major difference. Basically, they both create white blood cells but the GM-CSF is what gives them the "killer instinct" so to speak.

Unfortunately, I have to run this morning. I have several early meetings and my usual full day of purpose ahead.

5:21 AM 1/14/2005

Well, this will be the last time you hear from me until we will be live from New York City. I think we have just about everything ready to go. We have the kids, warm clothes, stollers, stroller covers, sheets, and just about anything else you can think of. On early Sunday morning we will be flying out to the big apple. On Monday morning Sydney will begin her first infusion of 3F8. We are scheduled as part of the morning group of 3F8ers. From what I have come to find out many of the families that we have come to know throughout this experience will also be there. In fact, there is even a family from Australia that will be there that we have come to know.

I will talk more about it on another day but we will be in New York for two weeks. We receive the antibody on Monday through Friday of each week and then we will have the weekends off. That will be a perfect opportunity for us to explore the city in more depth. We will be staying at the Ronald McDonald House. I still do not know about the internet access status but I will be taking my wireless cell phone access card just in case.

Enough about that. Although we are pretty much ready to go there is a mile long list of things that we need to do before we leave town. I am off to work to get it out of the way so I can get ready to really focus on my purpose.

3:28 AM 1/17/2005

Well, well, well look at me. I made it to New York, my family is accounted for, and I have internet access. I guess that is really all that I could ask for. I am still adjusting to life in the Ronald McDonald House but in many ways it is like a small reunion for the Children's Neuroblastoma Cancer Foundation. I have already talked to several families that I had known from the conference and even more whose stories I have read on the internet. I was even delightfully surprised to see that Patrick Connolly was here. I guess if you are going to have children with neuroblastoma there is no better father for me to go have a cold beer with. We can lament in each others stories while enjoying a glass of the frothy nectar of the gods (as opposed to the dark nectar of the gods - coffee). There is something special about having another father that you can talk to.

On the family front, we are slowly adjusting. For some reason, Sydney, my sweet innocent little princess (that is sarcasm) has decided to forego naptime for the fourth day in a row. That, in and of itself, may not be so bad but the problem is that, not only does she not sleep, she is noisy and argumentative which becomes a significant problem when she is sharing space with her brother. For four days in a row she has not taken her nap and has woken her brother from his slumber. This has left us with two rather agitated kids in the afternoon and evening. Furthermore, this has raised the stress level for the whole family and Lynley and I are at a crossroads as to what to do to remedy the situation.

I understand that there is newness in Sydney and Graham's lives. It is an adjustment. They have been ripped from their routines, once again, and thrust into a new world. For Lynley and I the transition is easier. But for them, I would think that it throws them out of normalcy. I am lucky, I accept change and just roll with the punches. I just kind of keep going. I don't even really think about it. Lynley, on the other hand, has to nest. She has to create a comfortable environment for the family and then she can calm down and breathe a little easier. We both have years of experience with change and have developed our routines for staying sane in our insane world. The kids, though, don't have that experience to draw upon. It is up to us to give them the consistency. We need to be their rock and their soft place to fall and for some reason, right now, they are just both out of sorts. Today my goal will be to help my family become comfortable with the change. I don't know what I will do or how I will do it but I will make a conscious effort to be the rock.

Early this morning we will be heading to Sloan Kettering. Our official appointment is at 8:30 AM to begin the 3F8 but we found out late Friday afternoon that we will need to get an x-ray before we start. An x-ray of what I do not know. It seems like a strange requirement and I am interested to find out the whats and whys. Regardless, we will show up a little before 8:00 AM to sneak in for a quick x-ray.

I might be unpleasantly surprised but I am expecting the 3F8 to be a walk in the park for Sydney. After everything that she endured with the administration of the 1418 antibody I just can't imagine this being that difficult. The companion drugs are more benign and the length of the antibody administration is shorter. The only trick will be to identify a suitable drug for pain management. Most kids receive either morphine (which Sydney is allergic to) or Dilaudid (which Sydney has never had.) Ordinarily we would use Fentanyl to control the pain but in this particular case it creates additional problems. Fentanyl is not compatible with anything so we would have to (probably, this is an assumption) run it through a peripheral IV. I would like to avoid a peripheral IV if at all possible because it will be a nuisance and an uncomfortable two weeks for Sydney.

I realized that I still have not discussed the 3F8, what it does, and how it works. I will need to do that fairly soon but for the time being I can break it down very simply. The 3F8 is an antibody from a mouse. In mice, this antibody kills neuroblastoma cells. So, basically, they take these antibodies out of mice and give them to kids with neuroblastoma with the hopes that they will kill neuroblastoma in humans as well. Now, it gets far more technical than this but that is the jist of it. So where does the pain come from? Good question! Neuroblastoma cells produce something called GD2 in great abundance. GD2 is the receptor that these mouse antibodies are attracted to. So, these little 3F8s get injected into these kiddos bodies and they go on the hunt for GD2. Once they find some GD2 they attach to it and start to do the work that little antibodies do. i.e. Hopefully they will kill the neuroblastoma cells. The problem is that GD2 is not only expressed by neuroblastoma cells. It is also produced, in smaller quantities, by nerve cells. So, to make a longer story shorter, some of these antibodies attach to normal, healthy nerve cells and start attacking them. This is what causes the pain. Maybe tomorrow, I will have time to go into more detail. Until then, I have got some really serious purpose ahead of me today. I will comfort my family.

4:02 AM 1/18/2004

The first day of 3F8 has come and gone. It brings back a memory of doing the 1418 antibody and the terms "as expected." Sydney certainly fell into that category. There was pain, but then it was over and she slept much of the rest of the day. It seems my problem of children not taking their afternoon naps was remedied by three doses of a little friend we like to call Dilaudid. I would not recommend the 3F8 treatment for parents trying to cure their child of skipping their afternoon nap but it is a handy little side effect if your timing is just right.

The pain in the 3F8 is comparable to that of the 1418 treatment. Sydney had severe belly "owies" and she writhed in pain for about an hour before it subsided. The Dilaudid did not seem to do much for her but, that too, brings back memories of the 1418. The first few days are always the toughest and then, for some reason, the pain seems to be better managed and not so severe. I am not going to pass judgment on Diluadid's ability to manage the pain until we have another few days under our belts.

The pain on the 3F8 seems to last about an hour. But, then again, I wasn't really watching the clock this time around. I was cuddled in bed with Sydney, rubbing her back and putting cold compresses on her head and belly. My mind was on watching her heart rate and looking for signs of it getting better. Mommy, the nurses (Marie and the one with the cool shoes) and I were all comforting Sydney. We were telling her what a good job she was doing and that it would get better.

As I mentioned this treatment is very comparable to the 1418. The pain does not last nearly as long but there are far more treatments. So, it really is a case of pay me now or pay me later. If you are looking for an answer of which is better or which is better tolerated there really is no answer. In the long run both produce pain and you just have to decide whether you want it all at once or spread out over many more days and both have the potential of producing a CURE.

Sydney was groggy most of the day. We gave her a lot of Dilaudid. I imagine that it will not take nearly as much today. Last night around 6 PM she finally turned back into herself in earnest. Although she was awake for several hours in the afternoon (due to our poking and prodding in an effort to keep her from getting her days and nights mixed up) she was agitated and ornery. Dilaudid definitely brought Cybil (Sydney's evil twin) out to play.

Well, it is another day and I have a ton of work to accomplish before the day gets kicked off. I am happy to say that my family is more comfortable in their environment. We are bridging the gap to normalcy. My purpii seem happier today.

5:17 AM 1/19/2004

Aaargh! I overslept! That is the responsibility of this super sophisticated "sleep number" mattress that the Ronald McDonald House has provided me with. Regardless, I am awake now and rushing to get everything accomplished.

Lynley and I are at odds - not bad odds just different ones. My impression of yesterday was that it was much better for Sydney. We started the 3F8's at about 9:00 AM. About 15 minutes later the pain set in. She complained about the "belly owies" for about ten minutes and then she turned stoic. For the next 50 minutes she was silent. Never uttering a word other than an occasional whimper. I was watching her pulse rate for signs of distress but she spent much of the hour in the 160s which to me was a sign of only minimal pain. The day before she spent much of the treatment in the 180s. In an effort to keep her out of a narcotic funk (like the day before) I, personally, elected not to administer any further doses of Dilaudid. I really thought the whole treatment was going swimmingly.

Lynley, however, was of a different opinion. She felt that Sydney's silence was a sign of increased pain and she was in favor of giving her more Dilaudid. She went with my choices but I could tell that she was not particularly happy with it. She wanted to give Sydney another dose and did not understand why I was not favoring more drugs.

To be honest, I did not think it would do her any good and, more importantly, I felt that Sydney was doing just fine. The monitors showed no signs of distress and I was content to just wait it out. And, so we did.

Sydney spent much of the rest of the morning sleeping. She did not really wake up until we were back in our room at about 2 PM. The rest of the day was spent playing and it was topped off with dinner at Serendipity III and a little bonus stop at Dylan's Candy Shop. Both kids slept well.

Today, well, I don't know what we will do today. Now that we know the ends of the spectrum we might try something a little different to manage Sydney's pain. Perhaps a half of a rescue dose may make it easier for her. Perhaps not. I really don't know. But, the point is, even though Lynley and I do not always agree regarding treatment, we are a team and we both try to do what we believe is in the best interest of our children. We both need to have the opportunity to participate in her care. Today she will call the shots and I will follow her lead. It is clearer than ever that we both have a purpose.

I have got to run. There are mountains to climb, streams to cross and, I know, there are bridges to build as well.

4:54 AM 1/20/2004

Day 3 down. Yesterday went fairly smoothly. We are getting used to the routine of this trial. We arrived at about 8:00 AM. We proceeded directly to the "Pokey" (this is the area dedicated to finger sticks and lab draws.) They drew her CBC and we were back out in the waiting area waiting for our morning rendezvous with the neuroblastoma team. Within minutes we were called back to see Y-chee (I will have to get the spelling for this today) Labs checked out, twerp checked out, and the next thing I knew we were sent back into our room for another 3F8 treatment.

Lynley was in charge. Yesterday she called the shots - literally. She had a pretty good idea. We started the treatment with the usual pretreatment dose of Dilaudid. About 15 minutes into the infusion she gave her another half dose. This was an effort to beat the pain and to try and stay in front of it. Sydney tolerated the treatment pretty well. I personally felt that the day before was a smidgen better but, all in all, she seemed to get right through it without too much pain. About 30 minutes after the infusion was over she had another wave of pain which we quickly treated with another half dose of Dilaudid. She continued to sleep much of the morning away. She was a little ornerier but by 2:00PM she was back to her sweet little self.

I saw several suggestions of other pain medications in the guestbook and I appreciate them greatly. It presents somewhat of a conundrum. Do we continue on this path or do we jump ship and try something else? Currently, I am of the opinion that regardless what we try we will still have some level of pain. Right now it seems to be manageable. Although I hate to see her go through it I am somewhat acceptant of the fact that she will have pain. The 3F8 treatment is not going to feel good no matter what we try and with her narcotic quirkiness I am hesitant to try something different in an effort to match or exceed the pain coverage.

Sydney is doing pretty well. She still has not put together the fact that it is the 3F8 treatment that is causing her pain. She assumes that the pain is coming from something that she eats in the morning - usually she blames the strawberry yogurt. Up until about 15 minutes into the infusion she is happy, playful and, by all practical accounts, normal. Drowsiness seems to settle in just before the pain. During the first ten minutes of pain she is audible and will talk to her Mommy and Daddy. It is usually something to the effect of "Mommy, Daddy, belly hurts - Owie, owie, owie. Strawberries hurt my tummy." We cuddle and coddle her and do our best to bring her comfort. We know the pain will not be ending soon. We know it will last another hour. So we try and just help her through it. We tell her that the nurses are giving her medicine to make her feel better. We tell her that we love her. We tell her that it will get better. Most importantly, we tell her what a good girl she is being. It is not easy. But she makes it through it everyday and by the afternoon she is ready to hit the streets.

Speaking of the streets, it is time for me to hit the road. I have a purpose to attend to.

4:13 AM 1/21/2004

I think yesterday was a little better for Sydney and the pain. This time we changed things up a little and gave Cat (the one with the cool shoes) the opportunity to make the call on when Sydney needed Dilaudid. She gave Sydney the usual premed dose just before the infusion began and then gave her another full dose about thirty minutes into the treatment. About thirty minutes after the infusion completed she had another wave of pain which we treated with another half dose. I think today we will try to be a little more proactive with the additional doses and we will cut the first additional dose in half.

Although the pain was better, Sydney was out of sorts for most of the day. It was obvious that the drugs just weren't releasing their grip on her. We could not placate her, no matter what we tried, and she was just plain ornery. The moment something did not go her way she would burst out into tears. That is not our Sydney. Generally she has a pretty tough skin. But, for some reason, it just took her a long time (until about 5:30 PM) for her to feel comfortable in her skin again. We ended up picking up dinner at an Italian Restaurant around the corner and we ate in the dining room at RMH. Sydney made a new friend (Ryan) and they spent another 30 minutes chasing each other around the room.

Today will be our last round of the 3F8 this week. We will have the weekend to rest and recuperate before restarting this mess all over next week.

On another note, I am irritated. In the infinite wisdom of our insurance company they have decided to deny our coverage for treatment in New York. Furthermore, the supervisor has decided it is her quest in life to be the rudest person she can possibly be to me. This lady's spite is almost funny. I guess I should not be that hard on her because it is obvious that Sydney's diagnosis of cancer is an extreme inconvenience to her. It must be bothering her a lot. None the less, I have never been anything but syrupy sweet to the lady. I am polite and I have never even uttered a questionable word. I have been helpful and kind, yet, I am repeatedly amazed by Collette's obvious signs of hatred and disdain for our family. I don't know whether it is her job to be this rude or if I have just really overstepped my bounds by asking the insurance company (and therefore her) to cover this treatment. Regardless, I am amazed at her capacity to be so entirely rude to families in need, especially when we pay the insurance company for this right.

I guess the thing that really irritates me is that they have drug their feet and then have blamed me for not getting it done earlier. Well, lets see, on the day we found out that we would be coming to New York I called them and sent them paperwork. I contacted my PCP, my oncologists at home, and our oncologist here in New York and asked them to do the same. I followed up with phone calls and/or email every couple of days to make sure they had everything they needed. Usually they would not return my calls or email but then would have the gumption to call me and demand more material in a moments notice (backed by veil threats of not covering our treatment if I didn't comply immediately.)

Then, to top off this nonsense. They have chosen not to fund this therapy because it is "experimental", "unresearched", and not accepted by the FDA. What makes me mad is, not only has this therapy been proven to be more effective than standard therapy and it is probably the most researched and documented therapy in Neuroblastoma but, it is approved by the FDA. All of this was included in the letters I sent them from our wonderful physicians - including footnotes and references.

Now, lets go one step further. The top oncologists in neuroblastoma all think this therapy is in the best interest for Sydney. They think it is medically necessary to give her any chance at survival. Yet, the people at BCBS somehow know what is better for my daughter and they know that this is not it. It is funny, I have never seen any research listings on PubMed from BCBS showing that they know more than the dedicated physicians and researchers that we have seen. Oddly enough, all of our doctors are published.

Now, so I can finally get off of my pulpit, let me take it one step further. If we did not do the 3F8 (by the way, we are just asking them to cover routine scans and tests and not the treatment drugs themselves or travel related expenditures) we would be forced to go back and do more chemo. Yes, more chemo would not only come at significant risks for Sydney but it would cost BCBS at least twice as much (and probably much more) to pay for that therapy. Yes, us coming to Sloan, saves them money. Can you believe it? It makes me so damn mad. They are so busy saying "NO!" that they haven't even thought it through enough to realize it not only gives Sydney a better chance at survival but it saves them money. Okay, enough!!

Now we will resume our normal non irritated programming. I love my daughter, my Dudely, and my wife and I thank God every moment for my purpii. Have a great day!!!

PS Happy 40th Birthday Mom!!!

3:40 AM 1/24/2005

We had a great weekend. Of course, we did not really do much with the snow but Sydney had a great time every time we went outside. We have learned a lot about the cold weather and next time we will be more prepared to actually play outside in it. When we packed for this trip we concentrated on staying warm. The problem is that we did not concentrate on staying warm and dry. Dry being the important word. Next time I will be prepared with snow boots, ski pants, and non-knit gloves suitable for making angels in the snow and snowballs. Regardless of our poor packing strategy Sydney had a great time.

Sydney had a fairly normal weekend. We did not see any lingering effects from the Dilaudid and although her pain on Friday was a little greater she recovered pretty well. We had a weekend full of regular three year old obstinance which was a welcomed change from the Dilaudid induced obstinance.

Today we will start our 3F8 treatments all over again

Dudely, my big tall man child, took his first steps this weekend. He made a few steps on Friday but everyday since he has gotten bolder and bolder. He is up to about six unassisted steps. He is so proud of himself and it is evident that he thinks he is quite the big stud.

On the insurance front, well, first I want to thank everyone for their advice. We still have not received any further answers other than a resounding "NO!" but our doctors are in the process of meeting with the regional medical director for BCBS. I was told by my dear friend Collette that I was not allowed to take it any further. In other words, I was not allowed to talk to anyone else or the medical director myself (Of course, I know better) Regardless, I am willing to sit on my hands while our medical team discusses our case with the medical director.

In the mean time, I have been preparing. I have been gathering all of my research and documentation for the 3F8 treatment and my communications with BCBS. We really have a strong case and precedence has been set - especially for someone is Sydney's position. There is no doubt in anyone's mind that this is the most appropriate treatment for Sydney. We can make a clear case that it is medically necessary (Although they have not come at us with that argument yet.) It is clear from their communication that they have disregarded the predetermination letter from our medical team. The reasoning for the denial of our claim was in direct opposition of what was included in the letter and the information is indisputable. I only hope they hurry up and send me the letter stating the reasoning for the denial because it is now evidence of them operating in bad faith.

And, oh yes, I have met with several attorneys (and means ones, too! The kind that like to sue insurance companies for the fun and profit of it.) and a representative of the Texas Department of Insurance. Based on my conversations with them I am willing to allow BCBS to come to terms with their bad decision. Based on the information I gave the attorneys (my insurance policy, my letter of predetermination (and its associated research and supporting documentation), and the reasoning that BCBS sent us) so far all of the groups above felt that we had a pretty clear cut case. They not only felt that the treatment should be covered but that we had some pretty strong evidence of BCBS operating in bad faith. I really like that.

Some have suggested that I have an attorney write a letter to them. I think it is a great idea but it is against my principles. I am not going to take $500 to $1000 out of my family's pocket to pay an attorney to draft a letter. In the best case scenario, BCBS would cover our treatment and we would be out the money just for making them do what was right in the first place. I am going to let them come to the right decision. I am going to provide information when they ask for it but, beyond that, I am not going to do a whole lot. My time is better spent with my family than in a paperwork and letter writing crusade with the insurance company. I will give them every opportunity to make the right choice and I will do everything I can within the confines of the system put in place by BCBS to resolve this dispute. But, if they continue to not operate in good faith and it is clear that they are not taking reasonable steps that are afforded to our family by law, I will have no choice but to let the legal system take over. If we do get that far (and after the benefit of already having had attorneys review our case) I feel confident that we will win. And the beauty here is that in the state of Texas, not only can we sue for coverage of the claim, but we can also sue to recover legal costs, my time in dealing with the case, and for punitive damages. Yes, if it gets this far we will go all the way. I will not settle for anything less. I have to protect my family.

After all, they are dealing with a family that has a purpose.

4:10 AM 1/25/2005

Day 6 is down and the pain yesterday appeared to be more tolerable. We withheld her daily GM-CSF shot due to an overwhelming white count of 48,900 (normal 5,500) and ANC of 30,500. Yes, it seems like Sydney's immune system is mobilizing well. Yesterday we only used one and a half doses of Dilaudid and it seemed to do the trick but it still left Sydney out of sorts for the remainder of the day. This is the point where any reasonable Mom or Dad starts to question their ability to parent. Yesterday afternoon, Sydney was a complete wreck. She would cry at the drop of the hat. A great example would be when she would ask for juice. We would say "Sure honey, what type of juice would you like? She would respond with "grape." We would say "Okay, one moment while I go down to the kitchen." She would say, "No, I want it now! (loud screaming cries) You broke my heart! (yes those exact words) Mommmmmmy, Daddy won't give me any juice." The wails and cries will continue until she finds something else to cry about and seems to continue irrespective of a prompt juice delivery.

I know the repartee above is a little hard to follow. Most of what she says in the afternoon is hard to follow because it defies all known logic. On afternoons like yesterday's we get a double whammy because not only was she hyped up on Dilaudid she refused to take a nap and sleep it off. The evening was better but not by much. Regardless, we are doing our best to comfort her without cowering to absurdity. She is difficult to placate and, as a parent, you begin to analyze your parental skills. You begin to wonder - Where did I go wrong? - and you question every move you make as a parent. You just hope that it really is the drugs. So far, it always has been and when the drugs stop she turns back into her sweet little princess twerp self. But, the self doubt is always there. Right now, I am wondering what I can do differently, not only to placate her, but to make her feel better. And, I know, I will just have to wait it out. (I keep telling myself that anyway.)

I have learned a ton about the science and medicine of neuroblastoma but I am getting a real good schooling in Sydney's fine art of "manipulative" medicine.

On another note, we had a visit last night from the "official" Ronald McDonald who, oddly enough, has a thick New York accent (It is amazing to see his ability to change dialect based on his location.) Regardless, he was quite talented and did a great job entertaining the adults and children alike. It took Sydney a little while to warm up to him but after a few introductions she followed him around like a puppy dog (kitty cat in her case) She would not leave his side and it left Lynley and I in stitches watching her chase him around the room. In an effort to get Sydney to eat (and give "The Ronald" a break) we asked Sydney to sit down and eat her dinner. Sydney barked out (in her best post-Dilaudid and non nap-having obstinate way) "No, I love him! I am going to play with Chucky Cheese! I am not hungry!" and off she ran. For the rest of the night Sydney would call him "Chucky Cheese" even though we did our best to correct her. Before she went to bed she told me "Daddy, I love Chucky Cheese!" To Sydney Ronald McDonald might always be Chucky Cheese but we (Lynley and I) know where our bread is buttered.

On the insurance front, the medical director from BCBS still has not returned any of the calls from our doctors. The official count is 3 business days. In short, we are still in a holding pattern.

I will wait patiently.

I have a purpose which will keep me company.

4:52 AM 1/26/2005

I only have minutes to write this morning. Sydney tolerated treatment fairly well yesterday although we had a new surprise - leg pain! It only lasted briefly but it is another example of how this seems to change almost daily. We finally got Sydney to take a nap in the afternoon to sleep off the Dilaudid nastiness. She was questionable for most of the day but was clearly much more pleased to be in her skin. Today we will see if we can do it again.

Well, I have to run. There is a mountain of work, an insurance company to fight with (oh, and by the way, it has now been 4 business days that the BCBS medical director has opted not to return Dr. Kushners calls), and a purpose to comfort.

4:34 AM 1/27/2005

Yesterday Sydney had a little more pain. We chased the pain with another one and a half doses and before we knew it the infusion was over and we were heading home. The battle for Sydney really is not the pain. It is the altered mental state that lingers into the rest of the day. I know it sounds strange but for me it is much easier to watch her in pain than to deal with the aftermath. It is not that I like seeing my daughter in pain but it is far better than to see her in what seems to be a tortured state. The Dilaudid fog just makes her so incredibly inconsolable. The only antidote appears to be sleep and the odds of getting her to take a nap are somewhere below fifty-fifty.

Yesterday afternoon we got a surprise phone call from the radiation oncologist who was confirming our anticipated arrival in her office at 9:00 AM this morning to discuss radiating her tibia. This was a shocker as it was the first time we had heard of this. After a few follow up calls it was decided that this was the only time that would work for them and the neuroblastoma team so we are going to go to the 9 o'clock meeting and then be "worked in" for our 3F8 treatment. I have a sneaking suspicion that this is going to turn into a very, very long day. I am hoping that the switcheroo will shake things up a little for us and give Sydney some peace in the aftermath of the 3F8.

The day before last I decided to shake things up a little and I gave BCBS a call. Instead of calling Collette, whom I knew would not care to talk to me, I started at the bottom wrung. I called an ordinary average customer service representative. Jenny was pleasant and polite. To be honest I was fishing. I was trying to figure the exact reason that our treatment was denied coverage. I had their letter in hand but the way it was written it could have been a multitude of things and I wanted to make sure that, when I sent them information, it was pertinent. After over an hour and a half on the phone we finally got down to the nut of the matter. Based on all of the notes in our file, BCBS decided to deny coverage because the 3F8 was not approved by the FDA. They needed proof. No wonder the medical director wasn't returning Dr. Kushner's calls. If they had proof they would not be able deny us for that reason. So, if they just stick their heads in the sand, act like we all don't exist, and assume that FDA approval doesn't exist, then it must not exist - right? It makes so much sense now. Maybe if I refuse to believe that Neuroblastoma exists it just won't affect Sydney anymore.

Regardless of my sarcasm, as soon as I got off the phone with my new, helpful, polite, friend Jenny at BCBS, I called Dr. Kushner's office and asked that the FDA documents be sent to BCBS. Ranooka, Dr. Kushner's secretary called them and faxed the documents. They should have the information now assuming they haven't decided that fax machines no longer exist.

Will this be the end of it? Oh, I doubt it. They could come back and say that the FDA does not exist or that they no longer believe the FDA has the authority to make decisions on which drugs can be used in trials. Heck, they will probably come back with a slew of other arguments ranging from, it is not medically necessary to the fact that it is a phase two trial. It is utterly ridiculous but as I mentioned earlier I intend to do whatever I can to work within their system to make this right.

Well, I am off. Work to be done, wife to kiss good morning, and purpii to prepare for what will be a long, long day.

4:24 AM 1/28/2005

Good Morning! I sit here writing on the birth of what will be our very last full day in New York, the last treatment of 3F8 this round, and, more importantly, the last time I will have to subject my daughter to Dilaudid for another month or so. Yesterday was surprisingly splendid. We met with Dr. Wolden (the Pediatric Radiation Oncologist) and her team at 9:00 AM on the button.

Sydney was in a great mood and made an effort to make friends with each of the three members of the radiation team that we were meeting with. She would go up to each one and look at them and then come running back to me to whisper "Is this one a good doctor, Daddy?" I would say, yes, and then she would run back to inspect them more closely. She played with some of the toys and even let one of the doctors decorate her sweater with stickers. She was pleasant, polite, and down right cheerful. She was the baby girl I remembered from several weeks back.

Dr. Wolden was nice and very informative. She specializes in pediatric radiation. There is something that gives me comfort about that and the fact that she radiates over 100 children per year that have neuroblastoma. We talked at length about Sydney's entire history but, most importantly, her tibia. Her take on it came down to this. Why not? The risks of this treatment are relatively benign given the field that they are intending to radiate. There is very slight risk of a secondary malignancy and it "should" not effect her overall development. (more on this in a minute) Given the aggressiveness of neuroblastoma, its ability to hide and linger, the abnormality of the MRI and bone scan at relapse, and the original MIBG scan at diagnosis there is a definite possibility that it could be disease. Her feeling was that we should radiate it so we don't have to worry about it any longer. This is a sneaky disease requiring an aggressive attack and she was very supportive of everything that we have done in the past.

They are planning on generously radiating her right tibia, starting just above the bottom growth plate and extending up about two thirds of the tibial shaft. With this radiation field they are not anticipating any growth problems although, in the worse case scenario, it could affect her right leg by 1/2 to 1 inch. When questioned about this, Dr. Wolden seemed to indicate that this was extremely unlikely and, even in the worse case scenario, could be corrected with her shoes.

After hearing this, I felt overjoyed. Sounds strange doesn't it? I was listening to this doctor's plan of radiating my daughters tibia and listening to the various risks and I was happy about it. I felt lucky. This was one of those moments in life where a light bulb went off somewhere in the deep recesses of my mind. I had naturally developed perspective. I was no longer looking for perspective to ease my pain of my daughters treatment. I no longer had to look around to realize how lucky I was to have Sydney and my family. I knew that it could be much worse. Somehow, throughout this process, I have grown to understand what is important. I don't have to convince myself. I don't have to think about it. It is now a gut reaction. It is happiness and acceptance of who I am and where I am. I haven't always had that feeling. When I started this diary I said that I was known to be full of myself. I was, but it was a protection mechanism. I wasn't always comfortable with who and what I was and it was because of things like this. I always had to look outward for acceptance of my own feelings. But now, for some reason, this one incident gave me strength. It made me feel strong because it came naturally and from within. It is, yet, another amazing gift that I have received from my daughter's journey.

Well, enough strange introspection. It is our last day in New York. I have enjoyed our stay and all of the people have been wonderful but it is time to get back home. I sometimes forget that although this is our life it is not necessarily our life. Funny, when you have your purpose to guide you, you can always feel like home.

5:16 AM 1/31/2005

Home, sweet home! I will tell you, coming back home was incredible. The entire trip felt like it happened in about 24 hours. It went by so incredibly fast and it was not until we got home that Lynley and I really how highly stressed we really were.

Sydney is doing well. Both she and Graham were incredibly happy to be home. We have seen some (what we believe) Dilaudid withdrawal symptoms but, for the most part, Sydney has done very well. We were warned that we may have to give her some Dilaudid this weekend to combat that withdrawal effects but neither Lynley nor I were to keen on the idea. Minus a few uncontrollable crying outbursts she really weathered the after effects pretty well.

Well, I hate to cut this short but I had to work from the moment I got off the plane on Saturday and, unfortunately, business calls again this morning. There is work to do, insurance companies to call, doctors appoints to schedule, and, most importantly, some purpii to love.

5:18 AM 2/1/2005

Well yesterday was stressful but, for a change, it was not incredibly stressful. So, all in all, it was quite a relaxing day. I feel like we have been going in warp drive for so long that over drive seems like a relaxing change. I think Sydney has completely recovered from her narcotic funk. Yesterday she was happy, playful, and loving. I don't even remember her crying. I remember writing in my diary a week or so ago and I said that I knew my baby girl would come back. I always wondered if I would be right. Was this the time that treatment really got a hold of her? Was she coming of age and justifiably acting out? No and Nope! It was just the Dilaudid and I have my baby girl back.

One of the father's that I met while we were in New York discussed this altered state with me and he put it in a great perspective. He said that, for these kids, it is kind of like the movie "Groundhog Day." They wake up day after day and go through the same treatment, the same pain, the same drugs. It tortures them and it makes them crazy and then overnight their bodies and minds recover and they wake up in the morning, bright and shiny, ready to do it all over again. It really is so true. What a great explanation. Thank you Emily's dad.

I will tell you. I have gotten some strange looks since I have been back. It should teach me to keep my mouth shut, but it doesn't. Everyone asks me how the treatment went and I always offer my official explanation. "Sydney's pain was only severe for about an hour each day and then it went away. So, it went really well. The only problem was the pain medication. It left her miserable for most of the remainder of treatment. If I had to compare I would say that the drugs were harder on her than the actual pain of the treatment." For some reason that hits people as strange. They give me that look as if to say, "Wow, it really doesn't seem to bother you that you put your daughter in pain and your more worried about how she acts afterwards. That doesn't seem right."

I guess it always comes down to perspective. I know the 3F8 treatment will cause pain. I know it will last about an hour and then it will go away. I was tempered by the ch14.18 treatments where the pain would last for 5 or 6 hours. To me, this treatment is easier because it does not last as long (although there are many more treatments) It has a predictable beginning and ending. I can hold her and comfort her during the treatments. I can put ice packs on her tummy and her head. I can give her my finger to squeeze and hold. I can tell her it will get better and I can tell her when it will happen. I have control. I have the ability to help and comfort.

The narcotic aftermath is not the same way. She is entirely out of her mind and inconsolable. She cries constantly and there is not a thing that Lynley or I can do to comfort her. She will have nothing to do with us and, it many ways, it's duration is less predictable. I have no control. I have no ability to help and comfort.

So for me, Lynley, and her, I think the Dilaudid aftermath is much more difficult than the pain. We all feel like we just can't make it any better.

Maybe I am strange but I would take the pain over the funk any day.

On other notes, we will be meeting with Dr. Eames on Wednesday with the goal of beginning radiation of her tibia next week. So we will also probably set up an appointment with the local radiation oncologist later some time this week. Graham seems a bit under the weather so I imagine that we will be taking him to see Dr. Debbie today. I have also been in touch with BCBS on a daily basis and they are starting to get real good at misplacing documents. It seems that although I have been told to fax my proof to a particular number at a particular time (in writing) that now BCBS no longer accepts this information by fax. I have now sent the same documentation three times and yesterday I finally broke down and sent it certified mail (signature required.) Today I will book the flight for our trip back to New York in three weeks and make arrangements for our stay. All of this while my company is in its most significant growth period since its inception. If I had to budget the time I need to spend at my desk this week it would be somewhere in the 120 hour range.

As I said, it is hectic and stressful. I feel like my candle is burning at three ends (don't ask me how) but my family is stable and happy. Sydney, once again, feels comfortable in her world. It really makes life seem like it is not so tough. Dear God, I am thankful for my purpose.

5:10 AM 2/2/2005

Another beautiful day. Yesterday was productive. We finally got the dates and booked our flights for the next round of antibody therapy. Someone was generous enough to provide us with 75000 frequent flyer miles to get our family to and from New York. Since I didn't ask her permission to post her name on the website and because I want to protect her anonymity we will just call her Jackie. Thank you, thank you, thank you Jackie. We are tremendously appreciative of your help. You saved our family over $700 in travel expenses and it could not have come at a better time. We will be leaving again on February 20, 2005 and staying for 16 days. We will be returning home from New York on March 7, 2005.

This afternoon we will be meeting with Dr. Eames. I don't know if I mentioned this but, Dr. Eames is awesome and I now have documented proof. While we were gone an article came out about her and Cook's and as it turns out the title of the article was indeed "Dr. Eames is Awesome!" We have missed her and our team in Fort Worth and we can't wait to see them. We will be discussing plans for radiation and her progress. After that we will be making a trip across the street to the hospital. Sydney is anxious to see her friends in the playroom and her dear beloved friend (a child life specialist) Miss Katie.

Miss Katie will be helping Lynley and I with teaching Sydney how to stay still throughout radiation. Last time Sydney had radiation she was sedated every day for ten days. Radiation brings back memories of days filled with Nembutal (a.k.a Nembu-RAGE), so we are going to make an effort to see if we can get Sydney to be still on her very own. We will be discussing plans to radiate her tibia twice per day. With this method (twice a day radiation as opposed to once a day) the belief is (there is no documented proof) that Sydney will be at less risk of side effects. I have not done the math (it is a complicated formula) but apparently she is exposed to less radiation but it still produces the desired effect. This method was a suggestion from the radiation oncologists at Sloan. So, either way, I hate the idea of having to sedate Sydney twice a day and, of course, I am always interested in saving BCBS money, so we are going to see if we can "train" her to go through radiation awake and by herself.

On another note, there have been two new NB diagnosis's since we were gone. We are going to talk to the new families. In this world you need to know you are not alone. You need to know that there is hope.

I have a purpose.

5:25 AM 2/3/2005

Well, I have been at work for nearly two hours now and I see no sign of slowing down so I will make this short. We had an excellent office visit and it has been confirmed that we will be getting busier. Today we meet with the radiation oncologist in preparation for Sydney's tibial radiation. We are hoping to have a simulation shortly thereafter. If all goes as planned Sydney will start her treatments next week. I believe it will be twice per day for five days (it may be as many as seven) It was good to see all of our friends at Cook's and we even got to spend some time with two new little NB warriors. Well, I have to run. If I am going to get to really focus on my purpose today I am going to have to get back to work.

4:26 AM 2/4/2005

I found myself awake way to early this morning. I am a little over an hour and a half into my day and I still feel like I am treading water. Yesterday was eventful. We met with the radiation oncologist to discuss radiating Sydney's tibia. We heard much of the same information that we had heard weeks before. The radiation to Sydney's leg should be relatively benign. They are going to try and miss the growth plates and given the relatively low doses that she will receive her bones should continue to grow. At worst we are looking at her right leg being about a half inch shorter than her left and even that is unlikely.

Following our doctors visit we took Sydney to the CT machine for her simulation. Sydney is great with CT scanners but I have always been in the room with her. This time I elected to leave the room. Knowing that she was going to have to complete her radiation alone I wanted to see if she could do it. She was a champ. It was 3 o'clock in the afternoon, she had skipped her nap, and we made it through with flying colors. They were able to create her mold, place her in it, and take all of the pictures necessary to start planning the radiation. She was a very good girl and I was extremely proud of her.

To be honest, I was a little shocked. In the waiting room before the procedure she was showing no signs of slowing down. When we made it into the doctors office she elected to be a twerp. The funny part was she was having a great time trying to pick on her daddy as I talked to the oncologist but she did it in such a way that she was nearly unpunishable. It was like many other times that I have to deal with bad behavior and my biggest problem in dealing with it is trying to keep a straight face. She definitely got some of her sneaky twerpfulness from me.

At first she decided to sing while we talked to her doctors. This was nice enough but, by the look in her eye, it was clear that it was not producing the desired effect. After a few minutes she decided to hum. In her mind this was better but it still did not have the punch she was looking for so she finally settled in on producing a solid tone, an annoying, everlasting, constant tone. It was clear from her expression that she was quite pleased. She sat their smiling and giggling as she continued to make this mind numbing unrelenting noise. She had succeeded and she knew it. There was no way for anyone to do anything but pay attention to her. She had annoyed us into submission. After we all stopped our conversation and turned to her I asked if she would stop and as long as someone was letting her participate in the conversation we were spared the tone. Yes, my beautiful, innocent little angel is also a twerp.

It looks like we will be starting our twice per day radiation schedule on Monday. The times have not been set but that is the plan as we understand it.

On another note, my honey is sick. Lynley has come down with the flu and seems pretty worse for the wear. I am trying to pick up where she left off and it has left us all wishing we could do more. This morning we will be going back to the specialist to get another ultrasound of Snicklefritz. Assuming I have not filled up the prayer box I am sticking a few more in for this morning. We hope to see improvement if not a complete disappearance of the problems that we had seen before. I don't know what it is about this time in our lives but it just seems like we have never been busier. Perhaps this weekend will be the necessary break that we all need. It will be nice to rest and relax with my purpii.

4:30 AM 2/7/2005

I think we are in a recovery mode. On Friday afternoon I am pretty sure that Lynley went through the entire silverware drawer and licked every knife, spoon ,and fork from top to bottom because on Saturday we all had the "crud." It sounds awful that all four of us were sick at home but, to be honest, there was something about it I liked. We have all had such torturous schedules that it was nice to stay in bed and snuggle with the kiddos until 10 AM on a Saturday morning. We all slept much of the day but spent the rest of the time huddled up on the couch watching movies. I hate that we were sick but it was an excellent excuse not to have to worry about outside pressures. We had no responsibilities - just each other. So, I guess, being sick is not so bad after all.

Poor Graham is the sickest. He carried about a 101 degree fever for much of the weekend. He is slobbery and his cry is hoarse but, most of the time, you would never know anything was wrong with him. He has slowed down a bit but still loves to crawl around and, on occasion, take a nice wobbly walk. For the most part he is cheerful and just happy to be here.

Sydney is mildly sick. She has a loose cough and sneezes frequently. She carried a low grade fever much of the weekend but seemed rather undaunted. She was playful and twerpful but took several rests.

Lynley, I believe, is on the road to recovery. She is still short of breath much of the time and the coughs come pretty frequently but she looks as though she is feeling much better. She has the habit of doing too much and paying the price but she used this weekend as an opportunity to relax a little. I am hoping, as I sit down in the den writing this entry and listening to the various coughs over the monitors, that she feels better this morning.

Today, Sydney will begin her radiation. We are to arrive at Cook's Outpatient Surgery this morning at 7:45. This first day of radiation is pretty long and they are going to prepare for her to sedated - just in case. I doubt that we will need to sedate her but they just want to be prepared. The problem is that because they want to be prepared, Sydney will not be allowed to have food or liquids this morning. That will make her ornerier and it will be harder to make her comfortable with the radiation machine, etc. I still think we will be able to get through it but it would be much easier if we did not have to prepare for the possibility.

Other than that, it is quiet and somehow peaceful this morning. I guess you could call it the calm before the storm. Today will be the start of another flurry of activity. All in all, there will be 4 doctors appointments in the Dungan Household today - two for Sydney and one for Graham and Lynley each. On a side note, Lynley's ultrasound on Friday went great. Snicklefritz is doing very well. There is still an echo of something on her heart but the belief is that she will grow out of it. The specialist sees no reason for us to return.

Well, I am off to another purposeful day.

5:05 AM 2/8/2005

Well, we did not exactly start radiation yesterday and it appears, this time, we will definitely start today. For some reason they made a change in the schedule and after we showed up at 7:45 yesterday morning they informed us that her treatment had been postponed. Not a huge deal but a phone call would have been nice. So, either way, we will try again today.

Graham continues to be the sickest but he is weathering the storm well. He cries more than usual and is particularly clingy but he operates pretty much as though it were any other day. He has a constant line of drool dribbling from is mouth but it does not seem to slow him down one bit.

Sydney, on the other hand, continues to have a pretty frequent cough. The antibiotics we put her on this weekend are taking their toll on her and diarrhea has become a new challenge. Other than that, she seems playful and well rested.

Lynley has continued to improve but is still not 100%. I think she, like I, is just completely stressed out. On top of what already feels like too much our nanny gave her two weeks notice yesterday. It seems that Martha is going to leave us to help care for her family. I understand but I just wish she wasn't leaving.

I am at the end of my rope. I don't think I have ever had so much stress in my life and the funny thing is that very little of it, if any, has to do with my family, Sydney, or her condition. In fact, the only time I feel safe, secure, and relaxed is when I am in their presence. I have always been good at letting things just roll off my shoulders. It seems like I have learned to always find a way to focus on what is really important in life. It is a gift from this journey. I am happiest when I am surrounded with my wife and children. Everything else just melts away.

But the moments that I am not with them, when I have to focus on reality, their is just too much. Work is burdensome. I am happy to say that our company has continued to grow and prosper. In fact, it is growing too fast for my liking. It has become an incredibly heavy weight on my shoulders. My partners and friends have done an excellent job covering for me over the last year and a half but now they need me. Our continued success rests on my shoulders and no one can take it off of me. It is my responsibility. Unfortunately, their just are not enough hours in the day for me to catch up. If I worked straight, without sleep, for the next 2 months, I still think I would be behind. I have to find a way to slow things down. I have to grab a hold of this.

Outside of that hurdle we continue to be plagued by insurance battles and the usual day to day issues of living. It just seems harder. I know life will calm down again. I know it will retreat to manageability but, right nowm it just feels like I am gasping for air. As my dad pounded into my head, "Life is not fair, just keep plugging away." And that is what I shall do. Somehow it just doesn't seem so bad when my purpii are beside me.

4:32 AM 2/9/2005

Well the first day of radiation is in the can. It was long and hard but, to my absolute amazement, Sydney made it through. Now, don't get me wrong, I expected Sydney to be able to make it through without sedation but what she did yesterday went beyond shocking. She has become my patience super hero. Now keep in mind, Sydney is 3 and a half.

We arrived on time at 8:30 AM. By about 8:45 AM we were waiting in the hallway outside of the radiation room. We were scheduled to be on the table at 9:00 AM. One of the kids before us had a little trouble getting sedated so we were pushed back by about 40 minutes - totally understandable. I did not want to be the one to tell Sydney that she still could not drink or eat because we still may have to sedate her. I did not want to be the one to tell her to be patient. But we did. And she was. At 9:40 Michael was rolled out but we were not rolled in. Somebody else took our place. Hmmm. We were right there. We were right in front of the door. Nurses and doctors began to scramble and the next thing we knew we were being told that we would wait another 10 minutes to an hour. Yes, once again, I did not want to tell Sydney any of this. But we did. And she waited patiently. Apparently they were not quite ready for us. I don't know what they were missing but, nevertheless, for the second day they were not quite ready. After about another 30 minutes we had Sydney on the table. Good!! A couple of snapshots (x-rays) and we would be under way. Sydney was good. She was calm and collected. She was going through all of these new procedures, all by herself, and she was doing great. Apparently there was some difficulty in getting the pictures clear enough that they could see what they needed to see. About an hour later and about 20 x-rays later they asked us to go to another machine. It was now about 11:00AM or so. Sydney was still being patient, she still had not eaten, and, I am pretty sure, she is still 3 and a half years old but based on her behavior and what seemed like an eternity of waiting she could be an adult by now. Sydney and I went to another room for more excitement. Lynley could not be in the room due to her pregnant state. She too was waiting patiently (not nearly as patient as Sydney though.) Dr. Nielson came in and asked me if I wanted to postpone all of this until another day. I proudly looked at her and said, "No, Sydney can handle it! Let's just get her back on the table and get it over with." They took another several series of films and after what seemed like about 45 minutes they flipped on the lights and said they were ready to go. There was a small wait time as we waited for another person to finish radiation and then we were once again back on the table in the radiation room. I told Sydney we were almost done. We just had three quick shots of the radiation machine and we would be out of there. And indeed it was. Five minutes later we were out in the parking lot. It was 12:20 PM.

How did Sydney do that? I couldn't have. I could not have just waited and waited and waited. An empty stomach, a new environment, new people, and an agonizing amount of time but she did. I calculated the time yesterday and I figure she spent close to two hours strapped on that table yesterday lying still. How'd she do that?

At 5:00PM we went and did it all over again. We had to wait about an hour for the room to become available but after the wait we were in and out in about five minutes. At 6:20 PM we were back in the car. She did it again.

I am both proud and awed by my purpose.

7:53 AM 2/10/2005

Yikes!! No time to write today. We are all still hanging on.

5:46 AM 2/11/2005

Okay, great, I have a few more minutes this morning. I am happy to report that we are still here. Graham continues to be sick. He has been officially diagnosed with an ear infection by our highly esteemed Dr. Debbie. Yesterday he started his antibiotics and we are hoping he discovers some comfort in the next 24 hours. Yesterday he was very clingy and preferred to rest on either Lynley or my shoulder whenever we were at home. He is still dudely but the poor little bugger is also just sickly.

Sydney has continued to be the radiation champ. She has been well-behaved and, most importantly, still. She seems to really enjoy going to get her radiation treatments and really likes most of the technicians and doctors. We have been following the radiation schedule and procedure mapped at out Sloan. This will be her fourth day of twice a day treatments. She will get the weekend off followed by three days of treatment next week for a total of 7 days of treatment. There is some slight reddening on her tibial biopsy wounds but, other than that, she seems no worse for wear.

Lynley is tired and overwhelmed. I understand completely and I know the feeling all to well. I only wish that I could help to take some of the stress off of her. Unfortunately, right now we are just both too busy playing catch up and we each have to deal with the stress on our own terms.

I, well, I am feeling better. I had one of those light bulb moments go off in my head and am dealing much better with my own stresses. Instead of running around screaming "The world is falling! The world is falling!", I decided to sit still for a minute. I realized very quickly that the world was not falling - it was me. Once I stood still I realized everything else around me was still. I guess when my head is spinning it makes the world look like it is spinning too.

I decided that I could only control what I could control and I had to stop trying to control things that either could not be controlled by me or could not be controlled at all. I realized that stresses at work were because a lack of sound leadership. I kept looking for it until I realized that the leadership was supposed to come from me.

I still have a million things to do. There is still a mountain to climb. But, like everything else in the world (and especially after everything that I have learned through my journey with Sydney) I have to take one step at a time and I have to focus on that one step - not the top of the mountain. We will get there. I have a purpose.

4:49 AM 2/11/2005

A quiet weekend at home was just what the doctor ordered. Graham is on the mend. I did not even hear him cough last night. He has been happy and back to his usual fun and games. Sydney, too, seems to be on the road to recovery. She still has an occasional pronounced cough but they are fewer and farther between. Lynley seems to be doing pretty well. A weekend away from fast forward business was the calm before the storm that she needed. After all, next weekend we will be going back to New York.

I have spent much of my time working. I am trying to work through the pile that is sitting on my desk. I am working too much but at least I do not feel high stress. I keep telling myself that I can only do what I can do. That seems to do the trick and as long as I focus on what I can control it seems to be rather comforting.

Today marks day 5 of radiation for Sydney. We will head back down to the radiation center at about 9 AM this morning for our first dose of the day. She really seems to have it down and I hope we will see nothing but the same for the remainder of the week.

Our lives seem somewhat boring right now. Perhaps, it is just my perspective. Regardless, it is Valentines Day and I am off to spend it with my purpii.

3:53 AM 2/15/2005

Another day of radiation has come and gone. Only two more days left. Sydney seems to be tolerating the dosing very well. We have had no signs of problems other than some reddening near her old tibial biopsy site. Last night she fell on her left knee while playing on the slide outside. She complained a little bit but, like most 3 year old injuries, she had forgotten about it in a few minutes. The problem was when we put her to bed. All of a sudden she started wincing in pain. She said her right leg hurt and began to cry. The question that immediately came to our minds was "Was she really in pain or was she trying to avoid going to her bed?" and then this was followed with the normal slew of the usual post-neuroblastoma wonderings like "Is it referred pain from her right tibia?", "Could it be referred marrow pain from neuroblastoma?", etc. After a few minutes of being unable to calm her down Lynley and I decided to take her to our bed to see if it would miraculously cure itself. I scooped her up and took her to our bed. We put ice on her knee and gave her a dose of Tylenol. Within a minute or two she was no longer complaining and, believe it or not, she asked to go back to her bed. That was a confusing answer. I was hoping she would get better and then ask to stay in our bed. That would have been some kind of proof , albeit weak, that she was just trying to keep from going to bed and not really in pain. Her wanting to go back to her bed really dashed my hopes of that being the case. It is my belief that she really was in pain. I don't know why a fall from two hours earlier would suddenly come back to haunt her but it sure seemed to. So far she has slept throughout the night and we have not even heard a peep. I hope that she wakes up (with a bruise) and we can all put our minds to rest. After all, we have another full day of purpose.

4:40 AM 2/16/1005

The last day of radiation is finally here. Sydney has just six more shots of the radiation gun. This also marks the first day of our next round of antibody treatment. Sydney will start her daily shot of GM-CSF in preparation for her next round of antibodies which are due to start next Monday morning.

And, in the never-ending insurance saga, Blue Cross Blue Shield has decided, once again in their infinite wisdom, to deny coverage for Sydney's 3F8 treatment. Once I received the denial letter I immediately called the customer service number on the back of the letter. This letter was nearly a carbon copy of the previous letter that we had received. We were being denied again because the treatment was "experimental/investigational." I combed through the BCBS literature again to make sure I understood the terms before I called. The problem is that experimental/investigational could mean a variety of things. I needed to know exactly why this treatment was considered experimental/investigational and exactly why we were being denied. I talked to a helpful representative named Bridget. At first she kept telling me it was denied because it was experimental/investigational. I told her "I understand that, I need to know why this treatment is considered experimental/investigational." She suggested I read the BCBS literature. I said "I understand BCBS's definition of experimental/investigational and I have had many people, including physicians and attorneys, apply that definition to this treatment and no one else believes that this treatment meets your definition of experimental/investigational based on the documentation provided. What I need to know is why BCBS believes this is experimental/investigational." She asked me to send them more documentation. I told her I would be glad to but without some help to find out exactly why it is being denied that supporting documentation would need to include everything in the universe. We are talking about truckloads of research and documentation. I told her I did not want to bury them with documentation and research but if they could not help me narrow down the scope I would need an address to send about 30 boxes full of documentation. I told her I did not mean to be rude but that we were talking about a huge amount of data as this was probably one of the most thoroughly researched treatments in neuroblastoma. She asked me to hold.

When she came back she told me that we had been denied coverage because the treatment was not FDA approved and because it was a phase II trial. I, once again (for the tenth time), pointed out that we have sent them information regarding the FDA approval for the treatment agents. I did not note that they had already approved us for 1 Phase II trial, 1 Phase II trial, and 1 inexpensive Phase III trial and that I knew the "phase II" trial argument was bogus. Regardless, after a few minutes more of chatting she put be back on hold. About ten minutes later she came back and told me that she found about 16 pages of material related to our case that was never given to the medical board. She said she would resubmit the information and that we could expect another letter in about a week. I thanked her profusely and that was the end of our discussion. Now we wait - AGAIN!

That's okay, at least I have a purpose.

6:37 AM 2/17/2004

I am happy to announce that radiation is over. It would be a great opportunity to get back to work but unfortunately Sydney's nanny is ill. So, I don't quite get to shirk my daddy duties yet. For the time being, less work and more purposeful life. I have to run.

4:36 AM 2/18/2004

Well,

I guess the next time I write it will be from New York. Sydney is doing well. She has had some slight reddening on her tibia due to the radiation but it does not seem to bother her. It is a short term side effect and not really of any consequence. Other than that she seems to be in tip top shape. She has received her daily dose of GM-CSF for the last two days and is tolerating the shots very well. In 3 short days she will be starting antibody treatment all over again. I think we will try to enjoy her sanity while she still has it, even amidst the hustle and bustle of pretreatment preparedness.

Graham seems to be almost fully recovered. He is still sniffily and has occasional bouts of diarrhea but his spirits are up and he is back to his active and loving self.

Lynley and I, well, we are still tremendously busy. With radiation and all of the pre-radiation appointments we never really felt like we got a break from treatment to catch back up at work. I am now getting up at about 3 o'clock in the morning and I am getting more accomplished but I am still well behind the start line. Somehow I am cramming about 12 hours of work into my schedule and I think I am doing about all I can do. For a change I will not work this weekend and I will find a way to relax in New York - somehow.

Well, I am off. There is work to be done and, more than likely, another day of rearing the kiddos without their nanny. There are phone calls to make, doctors to speak with, packing to be done, etc., etc., etc. Nobody can say I don't have a purpose today.

2:52 AM 2/21/2005

Good Morning from New York City, the home of, well, apparently snow. I just stepped outside for a nice warm cup of java this morning and, to my astonishment, there was about 3 inches of snow. I guess I knew it was coming but I was in disbelief. Last night was beautiful and fairly warm. I can't wait until Sydney wakes up she will be so excited.

Today I am broadcasting from outside our suite (309) at the Ronald McDonald House. We arrived yesterday at about 2:00PM and we have moved in - literally. Our room is nice although it is street side and we have already had the family wake up to a car alarm. For some reason, Lynley tried to blame me for waking up the kids at 2:30 in the morning but I quickly pointed out that it was not me but the car alarm that had been going off for the last five minutes. I mean, come on, what kind of uncivilized person wakes up at 2:30 AM in the morning to work. It makes no sense to get up before 3:00 AM.

Later this morning (much later) we will be heading off to Sloan Kettering for our first dose of antibodies this round. Monday mornings are always slow going so I imagine it will be at least 1:00PM before we get out of there. That will leave us with a Dilaudid funk until late in the afternoon. Oh well, I guess this wasn't really meant to be a vacation.

On the family side, most everyone seems to be in tip top shape although Sydney has developed a limp. It is in her left leg (yes, the radiated one) and it was present through most of the day. We think she might have bruised her heel early yesterday morning but we do not know for sure. We are hoping that it improves today.

Well, I am off to work. There is much to do and only a limited time to do it this morning. This will be a seriously purposeful day.

4:31 AM 2/22/2005

Day 1, round 2 of 3F8s is in the history books. Sydney tolerated the treatment pretty well. The pain started about 20 minutes into the infusion and lasted about 12 minutes. Well, that is not entirely true. I am sure the pain lasted longer than that but she was only vocal about the pain for about that long. After her time with "audible pain" she became silent and drifted off into a state which is very similar to sleep. It is obviously not a comfortable sleep but it is sleep or something very close to it. She stayed in this state for about an hour. After that, she woke up in the usual Dilaudid funk. Although she was disagreeable her funk was better. She only cried part of the way home and aside from complaining about Graham making noise she either slept it off or watched movies for most of the afternoon. By about 3:00PM she was back to herself and we spent the rest of the afternoon playing and having fun as a family. She had a couple of small bouts of pain later on but they were minor in comparison. All in all, it was a great way to start our next trip back.

The rest of us are keeping our sanity. With a little experience under our belts we have learned new techniques to make this lifestyle a little less stressful. So far we are doing well and glad that Sydney is in capable hands at Sloan. My family has purpose.

3:29 AM 2/23/2005

Sydney had another successful day of antibody treatment. She endured the pain and the aftermath very similarly to the day before. I don't want to make it sound easy or like it is a walk in the park but I think we are all far better to deal with the treatment this time around. We know what to expect and in that sense we are more capable of caring for Sydney during treatment and handling her Dilaudid aftermath. I don't really think it is going any better this time but it sure feels like it is.

After her treatment we took Sydney down for x-rays. When they first mentioned the idea of giving Sydney an x-ray after her 3F8 I though they were nuts. There was no way she would be able to get through it in her Dilaudid induced state. But, I was wrong and although we had to wait about an hour she was silent and still. She was a very good girl. X-ray, you ask? Yes, Sydney was continuing to show a limp in her right leg. It appeared to be improving everyday but Dr. Kushner wanted to make sure that we were not dealing with some effects from the radiation or something else. Sydney continues to limp, especially after she has been off of the leg for an extended period of time. The limp is not bad but it is there and it is noticeable. After use it gets much better and there will be several times throughout the day when she will run around without any type of limp at all.

The x-rays must have been the additional radiation she needed because we never saw hide nor hair of it again yesterday. It will be interesting to see how she (and it) is when she gets up this morning. We should hear about the x-ray report later this morning as well. So, for now, I am off. I need to catch up at work. That way, I can really focus on my purpose in a couple of hours.

4:19 AM 2/24/2005

I am happy to announce that Sydney's x-rays were negative. I can tell you of another story of another girl, just about Sydney's age. In fact, this little girl looks a lot like Sydney. We met this little girl and her family the last time we were in New York. At that time they were starting their first round of antibodies as well. We were both 3F8 beginners. This Tuesday they were sharing the same suite with us at the day hospital. This little girl had a limp similar to Sydney's although hers was more pronounced.

It was a little eerie watching them go through the scans and x-rays. I could see the stress and worry on the father's face as he stood by to comfort his daughter through the procedures. Everybody in the neuroblastoma world knows that leg and foot pain can be a nasty indicator of disease. Yesterday, as Sydney's foot owie was becoming more and more sporadic this little girls pain was becoming more and more intense. She was no longer bearing weight on it. As Sydney was starting to jump around this little girl has becoming more and more listless. The pain was more severe and now she had abdominal pain. Later in the morning, as we were receiving our antibodies, they were waiting to meet with the doctors.

By the time we were finished they knew. She had relapsed and an abdominal tumor had been found.

By 2:00PM their bags were packed and they were heading to the airport. They were off to try radiation and more chemo. They were off to fight for their daughter's life.

Why them? Why her? What makes the difference?

I hate this disease.

BUT, I still have a purpose.

4:29 AM 2/25/2005

Did you see that date? Yep, today the Dudester, my little Dudely - yes, Graham - is officially 1 year old. Can you believe how fast time flies. At this time last year we were in the hospital with Sydney getting treated with the ch14.18 antibody. That afternoon Lynley and I snuck out of the hospital to run across the street and give birth to the cutest little twerp in the whole world. If you can't tell already he is by far my favorite son and is tied for first in being my favorite child.

Yesterday afternoon we took the kids to FAO to shop for birthday gifts for Graham. Yes, you heard me correctly. We went yesterday afternoon - Dilaudid and all. The more I think about it the more I realize that we are all getting better at the 3F8 treatment. Sydney is definitely better with the Dilaudid, Lynley and I are definitely better at handling its effects and, well, Dudely, well, let's just say he never had any issues in the first place.

One of the tricks that we have instituted in an effort to get through the Dilaudid craziness is that afternoon administration of Vistaril. It seems to calm her down a bit and take the edge off. It makes her life bearable and in those moments of malcontent it seems to be just the thing to bring her back into reality. Even at its worst we are able to communicate with Sydney and I think that is the biggest difference. So, if you are facing the narcotic nutsies with your child, consider using Vistaril after the wean. It might just make your child's life bearable.

Well, enough talk. I have to concentrate on some serious purpose today. Not only is this the last day of treatment this week for Sydney but it is Dudely Day and I have some serious Daddying to do.



3:45 AM 2/28/2005

We had a wonderfully relaxing weekend. On Friday, Sydney had a little more difficult time with the pain. In order to better control it we upped the administration of Dilaudid. Instead of receiving one rescue dose, she received two. It did not take long before we were faced with Cybil. Once again, she was completely out of her mind. She was acting very similarly to the days of our first round of treatments. Yes, after I had just finished my update on Friday morning and I had written how much better this round of treatment was she threw us for a loop. This was not the way we wanted to spend Dudely Day. We spent most of the morning and early afternoon dealing with trying to calm Sydney and then finally at about 3:00PM she returned back into our world.

As usual, Dudely was undaunted by his sister's craziness. He was just happy to be there and happy to be having a birthday. He was now one, and, with that, he felt that he deserved some new rules (in his words).

1. I don't like formula anymore. I am one and from now on I will only drink "Juju" (Juju is juice, water, or anything but formula) Now anytime we put a bottle of formula in front of him he will toss it aside and say Juju, Juju until we get him something else.

2. I don't wear mittens anymore. I am one and I am old enough to decide whether I wear mittens or not. If you put them on I will take them off. Besides, I can't drink Juju with mittens on.

Later that evening, Dora the Explorer made an appearance at the Ronal McDonald House. Nothing could have been better for little Dudely. After all, she is his first true love. As a dad I would prefer that he was not enamored with Dora Dolls, Dora pillows, etc. but at least he likes her because he thinks that she is a babe. Both Sydney and Graham enjoyed the time that they spent with Dora.

Later that evening we would go out to dinner.

Saturday and Sunday were filled with much relaxation although we did take the opportunity to get out a bit. On Saturday we went to a toy and craft store to get some things for the kids. About two hours later they both came out of the store with enough activities to keep them busy for the next year. On Sunday we went to Central Park to see the gates (their last day in the park) and to visit the zoo.

Hmmm. The gates. Well, lets just say that I could not see the forest for the trees or, in this case, I could not see the art amidst all 7500 of the obnoxious, orange, plastic, construction like, gates that were spread across the park. But then I guess for $21 million you should get a lot of orange plastic gates. Of course that would not have been my choice to spend $21 million. Lets weigh it for a moment shall we. Decorate the park for 17 days with orange plastic gates or use the dough to fund research. Let's see, that amount is roughly what is spent to research neuroblastoma over a period of ten years. Heck, in that amount of time we could even find a cure. It just doesn't make any sense to me but of course, I am biased. I am going to have to figure out how to make art out of neuroblastoma.

Well, enough dribble. Today starts another treatment week for Sydney and another concentrated week of purpose. I am off.

4:16 AM 3/1/2005

We had another successful day of antibodies on what seemed like the day that would never begin. Mondays at the day hospital are chaotic. Doctors, nurses, and our faithful nurse practitioners, are all scrambling. Although we arrived at nearly 8:00 AM, it would be about 11:00 AM before we actually got underway. Thankfully Sydney's ANC was 21,900 (avg. 5,500 to 8,000) so we were able to forego her daily shot of GM-CSF.

Sydney's pain was average for this trip. She received two half rescue doses which was just enough to help cover the pain ("cover" is a relative term which requires perspective) but not enough to send her into narcotic oblivion. By about 12:30PM she was ready to head out the door.

There is a funny side note to mention here. Graham has also decided on a new rule of his existence. Graham has decided that he can say anything that anyone else can say. He really cannot make any words but he is excellent at reproducing sounds. So, to make a long story short, he finds great delight in trying to repeat anything that he hears. Well, when Sydney is on Dilaudid she likes it quiet and gets very angry at the noises that she hears on the way home. Yesterday, after we gathered her stuff and made it to the elevator on our normal post treatment venture from the day hospital back to the Ronald, the elevator made a noise that made Sydney mad. She exclaimed (and I mean yelled) "Be quiet elevator!" This sent Graham into his Copycat mode and, sure enough, he tried to repeat Sydney's outburst. Well, this further pissed Sydney off (I use this term because it is the most accurate description of her state of being) and she began yelling "Baby brother be quiet!" and yes, you guessed it, Graham repeated it right back to her. We got to witness this banter all the way back to the Ronald (yes, all five blocks) and it was somewhat embarrassing but, more than that, it was just plain funny. I know the people that we passed in the hospital hallways and on the sidewalk on the way home must have been in sheer disbelief at our misbehaving kids but ,dear God, was it hilarious. As sad as it seems it was definitely the highlight of our day.

Well, once again, I am off. I have a purpose and I am anxiously anticipating another day of what appears to be Graham's as well.

3:58 AM 3/2/2005

It was another well tolerated treatment day for Sydney. She had her usual amount of pain and we seemed to keep it in the bearable range with 2 half rescue doses of Dilaudid. All in all, this has been a pretty nice week for her and I am just hoping and praying that it can stay the same for the remainder of our trip. We have seen so many others receive bad news or have bad reactions as of late and we understand how lucky we have been. In short, we will take our pain and our antibodies and just try and sneak through the rest of the week. We have a purpose and a plan.

4:22 AM 3/3/2005

Sydney had a great treatment day. Although the pain was evident, it was relatively short lived and it only required a half rescue dose of Dilaudid to get it under control. Honestly, we look for pain. The doctors and nurses want to see it. You see, 3F8 is like the old adage - no pain no gain. If a child is receiving the antibody and they are not in pain it is likely that they have developed a HAMA (Human AntiMouse Antibody) and the 3F8 is probably being destroyed before it can actually do its job. So, in short, it is important that we see a little pain everyday. After this round, however, the gloves come off and we begin to look and root for a HAMA. The literature gets pretty detailed but basically after a few rounds of 3F8 they actually want these kiddos to develop a HAMA. The HAMA response creates another antibody (called Ab3) which is believed to also have anti-neuroblastoma effects.

I slept in a little today and it is time to get to work before the twerps wake up. Only two more treatment days left for this round and my purpii are ready to get back home.

4:00 AM 3/4/2005

Well, the very last treatment day for this round of antibodies has arrived. Sydney tolerated yesterday's treatment fairly well. She required two half rescue doses and had some difficulty coming out of her Dilaudid funk but seemed no worse for wear by mid afternoon.

We will be staying in New York throughout the weekend. Sydney will have bone marrow biopsies and aspirations on Monday morning. She should recover quickly enough to grab an evening flight back to DFW. To say we are anxious to get home would be an understatement but we are thankful for how smoothly this trip has gone thus far.

Sydney will start Accutane, once again, this weekend. Although we are not excited about all of the side effects we are hoping that she still remembers how to swallow the pills. This will be a "fun" activity for this weekend. Hey, we have to have a purpose.

3:43 AM 3/7/2005

The bone marrows have finally arrived. Today Sydney will have her bone marrow aspiration and biopsy to assess how she is responding to the 3F8. For us these tests are not just normal routine bone marrows, but instead, probably the most critical bone marrows we will have. I wish there was something that we could do to prepare for them but, then again, I guess that is what we have been doing for the last couple of months.

Yes, these bone marrows are like the rest in that we want to see no signs of disease. We want to see that she continues to be clean and healthy, but this time there is much, much more and to a certain extent Sydney's life hangs in the balance of these marrows. You see, this time, they test her marrows using a very sensitive test called the RT-PCR. It is a fairly complicated but quick test. It has been a while since I have done the research (you can bet I will be revisiting it on the plane flight home today) but basically they test the marrow and they look for neuroblastoma. Well, in actuality they measure GD2 synthase mRNA. Positivity of the GD2 synthase mRNA is strongly associated with progression-free and overall survival. When patients are stratified by complete/very good partial remission versus partial remission, GD2 synthase positivity is prognostic when detected before 3F8-targeted therapy. Persistent marker positivity is also predictive of progression free survival. Patients who succumbed to this disease have transcript levels four times higher than those who remain alive.

To make a long story short, not only are these marrows important to show that she no longer has neuroblastoma and that the treatment is working but it will also give us a marker and an indication of her overall chances of survival.

On a sad note, I found out that Paul Saxon has relapsed. For those of you who don't know Paul, he was diagnosed at Cook's right before Sydney and his father was a very important part of Lynley and I learning to cope with this monster disease. I spoke with him over the phone on the weekend and my heart has been ripped out of my chest. This damned disease is just not right. So, you can bet that I will be praying for several things today. I hope you do to.

Today we all need a purpose.

5:31 AM 3/8/2005

Home, sweet home. Yesterday was a long day. We finally made it home at about 10:00PM. Sydney's bone marrow biopsies went well. It will, hopefully, be several days before we hear any results (It seems that when you wait longer for results it is because they cannot find disease.) On the parenting side, they woke us up this morning. Apparently, they haven't adjusted back to central standard time. I have a feeling this will be another long and tiring day. But hey, they are my purpii. I can sleep tomorrow.

5:22 AM 3/9/2005

I finally slept in. In fact, I slept too much and I am not as perky as usual. Yesterday was a great day. Sydney and Graham are both ecstatic to be home. Sydney is now on day two of Accutane and has been taking her pills like a big girl. Currently, she is swallowing them whole. She is taking them without incident and prefers to be sneaky about it. This is a huge change since the first time we tried to get her to take her pills. I remember hours of begging and pleading and endless loops around the pool as we sang the "chew chew" song. Okay, so some of it was fun, but this is so less stressful (for her and us.) Now we simply take the pills out of their containers (Well, I do. Lynley is not allowed to touch the pills due to her pregnant state) and place them on the table before her. She takes three pills in the morning (2 honking 20MG and 1 10MG) and two pills in the evening (2 honking 20MG pills) We then give her a glass of water and a straw. She then picks out the pill she wants to take first. Here is the critical part - both Lynley and I act like we are not paying attention. Out of the corner of my eye (you have to watch them because these twerps are not trust worthy) I watch her put the pill on her tongue and start sucking water through the straw. After the pill is gone she makes an "Ahhhh" sound and we all look at her in total astonishment that the pill is gone. We then act shocked and amazed by her sneaky big girlness. We repeat this scenario over and over until all of the pills are gone (about two minutes.)

Now, I know, some of you first time Accutane parents are reading this and saying "Wow, how lucky you are!" but it was not always this way. If you read back in our history you will see that we went through everything to get her to take her pills. I have no idea of why this is going smoothly but I think it was partly due to our behavior. Ever since our first go around with Accutane Sydney has been a part of our pill taking experience. She watches and participates every time Mommy, Daddy and occasionally DeeDee, MiMi, and Papa Kip take a pill. It has become normal routine for her and she just assumed that it was something that we all do. So, if you are getting ready to do Accutane or even if you are still in induction I would strongly urge you to start making pill taking a family activity and once the habit is established start these kiddos on sugar pills. It will make your life easier and theirs less stressful.

We are still awaiting our marrow results. Nail biting and purpose are in full force.

4:46 AM 3/10/2005

Guess what?? Sydney went back to school yesterday. Yes, yesterday morning we packed up her back pack, filled her Shrek 2 lunchbox with goodies, grabbed her blanket and stuffed kitty, and whisked her off to school. I will tell you, when we got there it was a pretty emotional moment. There were tears streaming down the cheeks of several of us. It was not from fear of her being there. We knew she was in great hands. It was just one of those life moments where we all realized how lucky we were to have her back. Our baby girl had made it back to life. It was truly special and a moment I will cherish forever. Simple things......

Sydney had a great day at school and she was excited to tell me about it. When I picked her up and they asked if she would be back tomorrow. I asked Sydney the same question. She said "Oh yes Daddy, please can I come back tomorrow?" She said "please" so I knew this must have had a profound affect on her. So, today my big girl will be going back to school. How normal, how safe, and how thankful I am.

On another note, we are still waiting for marrow results. .I would make another quip about nail biting but I don't have any fingernails left. I am starting to worry and to be honest I have no rational reason to. Dr. Kushner told us that we would probably hear the results on Wednesday or Thursday. I know that the longer that we wait (according to Dr. Kushner) the higher the chances are of good results, but it does not stop my mind from racing. He set a precedent last time we had marrows by calling the following day. Now, we will just wait and try to chase away the bad thoughts. On the outside, I seem stable and in control but, on the inside, I am a trembling nervous wreck.

At least I have my purpose to keep my mind off of it.

11:12 AM 3/10/2005

Just heard from Dr. Kushner's backup secretary....

MARROWS ARE CLEAN

I repeat..........

NO SIGN OF NEUROBLASTOMA ANYWHERE

Boy, am I purposeful today!!

5:14 AM 3/11/2005

I have decided that I like exhaling. It seems like I had been holding my breath for so long that I had forgotten what it was like not to. We still do not know a lot about her marrows other than the fact that they are clean. Don't get me wrong, I am pleased with that but there is some more information that we are looking for. I am drafting an email to Kushner to ask him some more specific questions.

On another note, Sydney went to school again yesterday. She was a little ornery in the afternoon when I picked her up. I would love to blame it on the Accutane but I have a sneaking suspicion that she just skipped her nap at school. Today we will pick her up just before her naptime because we have a doctors appointment for her in the afternoon. It is not really a very exciting doctor's appointment. In fact, it is primarily for a blood draw.

This weekend we will relax. We are planning to celebrate Dudely's belated birthday at home with some close friends and family. We are hoping for a nice quiet weekend. We could use the time to just breathe a little, just a nice restful weekend of purpose.

5:07 AM 3/14/2005

Wow, what a relaxing weekend and Friday afternoon was great. Yep, getting a blood draw at the clinic now qualifies as an exciting social visit. There is just something tremendously special about the people at Cook's. After an hour long wait in the waiting room we were whisked back for Sydney's blood draw. The purpose of the visit was a liver function test and a calcium level. This is a standard fair test for kids receiving Accutane. After receiving a finger poke and saying all of our "howdies(Yes, we are still Texans at heart)," we made our way up to the oncology floor. There we found many of Sydney's friends and, luckily, Miss Katie - child life specialist extraordinaire and the benevolent Dr. of all Drs., Dr. Eames. To say that Sydney was excited would truly have been an understatement. She was completely ecstatic and chose to run laps through the halls of the hospital. I, on the other hand (and in between chasing Sydney) got to catch up with Dr. Eames and all of our favorite nurses. We talked about New York and Sloan Kettering and they were quite happy to find out that I was as an annoying stickler up there as I was at home and that I was peppering the doctors and nurses with the appropriate amount of questions.

Honestly, I like New York and Sloan Kettering. It is a tremendous facility with great people. But, there is something so special about coming home and even "specialer" about being with our friends at Cook's. I did not realize how much I missed them (even if I had to wait an hour in the waiting room). I guess some things just never change.

The weekend was filled with normalcy and Dudley's belated birthday party was great fun. It was so nice to see Sydney playing happily beside her beloved Truman and to see Preston (Truman's little brother) scurry around the house (even though he had the habit of marking his territory). Yes, the potty training needs some work and I need a new bottle of Clorox. Most importantly, Dudely had a good time even though he was certainly oblivious to the fact that this party was in his honor. He is such the gracious and appreciative host. He was just happy that everyone was having a good time and had no concern for his own wellbeing. He had no need to be the center of attention. It really is hard to believe that he is of my stock.

The remainder of the weekend was consumed by trips to Home Depot (we are still trying to finish the guest house) and hours of kiddo playtime. I really could not have asked for more. It was the perfect weekend for myself and my purpii.

6:16 AM 3/15/2005

I am running a little behind today. I am swamped at work and swamped at home. Sydney continues to do well. The Accutane appears to be having its effects. Her face is peeling and we are starting to see signs that we had not seen since the last go around with these pills. It is strange but her ears turn bright red under Accutane. It does not happen all of the time but there are definitely times during the day when her ears turn bright red. It looks a little funny but is not necessarily worrisome.

Well, I have to run. I have a day full of purpose.

5:36 AM 3/16/2005

Another great day! It is so nice to have difficulty finding something to say. I am ecstatic to report that there is absolutely nothing medical going on in our lives. The highlight of this week will be a trip to the clinic on Thursday afternoon to get blood drawn for our HAMA test. That is it, no more and no less. I guess a could talk about the 3 huge Accutane pills that Sydney swallows everyday. I could tell you that it is difficult and stressful, but it is not. I give her two pills and a glass of water with a straw in the morning. I walk across the kitchen to fill up my coffee cup. I come back. They are gone. Magic! I, then proceed to be surprised that my twerp swallowed them so quickly. I give her a kiss -- end of story. The same ritual is performed at night with one pill. No excitement, No drama - just normal life.

So, yep, life is good and so is my purpose.

5:11 AM 3/18/2005

Oops, I missed a day. Everybody is well. We had two days of what seems to be complete normalcy. Sydney has gone to school and Graham has been happy at home. Lynley and I have both been working our fingers to the bone. Yesterday afternoon it was time to take Sydney to the clinic for another blood letting. Half way through our time off of the 3F8 antibody we are required to get a sample of blood (10cc) from Sydney and we FedEx it overnight to the research lab at Sloan Kettering. This is to test for HAMA - the anti antibody response. Although I am doubtful that Sydney has HAMA'd we are official getting to the point in therapy where HAMA is a strong possibility. Based on my discussions with Dr. Kushner, we can start to expect a HAMA anytime in the next couple of rounds. Of course it is possible that she may never HAMA but the odds are that she will. Once again, we don't know (no one does) if HAMA is good or bad soit would be nice to have one at some point just for good measure.

Either way, yesterday at about 2:30 PM I headed over to Sydney's school to pick her up and take her to the clinic. When I arrived Sydney was waiting patiently in the potty line for her turn. The potty setup at the school is perfect for little tykes. They bathrooms are right in the rooms and the potties are just the right size. Their are no doors which allows for easy access but the potty is somewhat hidden - unless you are standing in the potty line. As I entered the room, Sydney was making her way to the potty. Next to her in line was Preston - typical!!. I could not see what she was doing but Preston sure got an eyeful. It was a typical Robertson maneuver to try and watch my daughter go potty. Those boys are always ogling my Sydney and I am sure they will turn out just like their Dad. I tell you, you just can't trust those Robertsons - even the two year old ones. Those Robertson men are all little horn dogs.

About a minute later Sydney was finished and she stepped out of the potty. I stopped giving Preston dirty looks (not really) and we were on our way. Actually, I was quite pleased to see Preston made it to the potty. If I remember correctly, last weekend at Graham's birthday party he didn't quite make it to the potty at our house. He was probably marking his territory - another typical Robertson maneuver.

I will have to watch this more carefully.

Until then, I have a purpose.

5:16 AM 3/21/2005

It was a great weekend. The festivities started as I took Graham to pick up Sydney from school on Friday afternoon. Low and behold Kori was there with Truman to pick up Preston. Fortunately, they had not read my diary in a couple of days and were none the wiser. They asked if Sydney and Graham would like to join them on a jaunt to the Botanical Gardens to visit the butterfly sanctuary. Not able to think of a good reason why this would not be good clean wholesome fun I accepted.

The sanctuary is a greenhouse about the size of a basketball court. It is filled with flora and fauna and, you guessed it, butterflies. We spent about an hour looking at the various species flutter around inside what felt like an oven. It was good fun but Sydney was not happy that the butterflies would not fly up and land on her. She would stay very still and stick her arm out. She had all the right methodology but it just wasn't going to happen. As the time wore on she just got madder and madder. By the time our tour had come to an end she was mumbling under her breath at the "stupid" butterflies. Yep, my daughter.

The rest of the weekend was busy with honey dos and family time. I can't really think of anything exciting that we did but we were together and happy. I guess you could call it a "Dudely" weekend because we were just happy to be together.

Today marks the last day of Accutane. Sydney will have a days rest before starting her GM-CSF on Wednesday.

It has been a nice relaxing purpose for a change.

5:33 AM 3/23/2005

Well, Sydney had her day long break from therapy but I don't really think the day was a break for anyone. It started out with a visit to Lynley's OBGYN to get a ultrasound peek at Snicklefritz. From what we could tell the ecogenic photocyte is still on her heart but no one seems to be too concerned about it. Well, we are of course - we are parents. We are supposed to be. But, no one in the medical community seems to be concerned about it so, all in all, it seemed to be a pretty good checkup. We were able to make out most of the babies features and we even saw some tiny hairs on her head. We will get the official report today at an 11:00 AM appointment with Dr. Quist but the ultrasound technician led us to believe that everything was a-ok.

Lynley's trip to the doctor was followed (later in the afternoon) with a trip to Dr. Debbie for Graham. On the way to meet them at the doctors appointment I stopped by school to pick Sydney up. She did not nap too well and was a little on the quiet side. When we arrived, Graham was getting weighed and we made our ways back to the room to wait for the doctor. This was Graham's belated 1 year doctor's appointment which we were also using as a doctors visit to check out his who-ha, which seems to be a little under the weather.

The children tortured us sweet parents as we waited for Dr. Debbie to make an appearance. The kids quickly noticed that the room we were in was too small to really get aaway from us parents and reek havoc but they were smart enough to move in opposite directions. I think they were trying to play a game of divide and conquer with us poor little parents but they were having an extremely good time of keeping us on our toes. I think we waited for about 45 minutes but I could not be sure. They had me frazzled and I felt like a cartoon character bouncing from one side of the room to the other to keep the kids from doing things that they weren't supposed. It is clear that the kiddos are teaming up on us. They are getting wiser.

Graham, got a clean bill of health. He is almost 23 pounds, in the 50th percentile for weight, and in the 75 percentile for height. His who-ha is definitely broken but I am glad to report it is only a yeast infection. We should see improvement almost immediately with a little Nystatin.

Later in the evening, Sydney started to complain of inner ear pain. At first it was hard to tell if she was just irritable from a lack of a suitable nap and then later we thought it could be a sneaky last ditch effort to keep her from going to bed. By about 9:00 PM we knew she was in some fairly serious pain that was not being managed by Tylenol. We ended up putting her back in bed with us and gave her some decongestant. She continued to cry much of the night but the episodes seemed to dwindle in intensity and frequency as the night drew on. I am hoping that she wakes up comfortably this morning but we will be scheduling a visit to the doctor regardless. We need to get on top of it. We have to be on a plane heading back to New York on Sunday.

It seems we will have another busy day full of purpose.

6:00 AM 3/24/2005

Good Morning! Well, I am happy to report that Lynley's meeting with her OBGYN went well. "Snicklefritz" is in perfect running order with the exception of the ecogenic photocyte. We were, once again, reassured that it was most likely nothing. Later in the afternoon I took Sydney to the clinic to get her ear checked out. Sure enough, her left ear is red and inflamed. She has started a large dose of amoxycillin and it is expected to improve very quickly. We are also giving her an over the counter decongestant to help relieve the pressure.

I, on the other hand, woke up with a huge, raging congestion headache, the kind the keeps your brain from being able to complete a thought. To top that off our loving children have both awoken (over an hour early, I might add) and they are ready for the day to begin. Today my purpii are starting before I am ready. Oh well, I guess I am lucky enough to spend an extra hour with them today.

3:51 AM 3/25/2005

Well, another good morning has arrived. I woke up at 3:15 this morning totally refreshed. It is the first time I have woken up in the last few weeks and truly felt relaxed. As of last night everyone seemed to be on the mend. Sydney has not complained of any ear problems and her stuffiness seems to be improving. Graham had been tugging on his ear and coughing as well but as of bedtime last night he seemed to be doing just fine.

Sydney is now on day 3 of her GM-CSF shots. Historically, Lynley has always been responsible for delivering the shot. That was her domain. My job was to hold Sydney's hand and keep her distracted but, now, the game has changed. I have had to step up to the plate and learn Lynley's "non-owie" shot administering technique. You see, this time we go to New York, I am on my own. Lynley and Dudely will be staying home as Sydney and I make the jaunt to Sloan. Yes, that means that for the next two weeks I will have to be both Super Dad and Super Mom, and furthermore, that means I will be administering her shots.

So far, although I am not as good as Lynley at giving Sydney the shots, I am doing pretty well. Giving shots is much easier than receiving them and my patient is an expert. Last night, Sydney even gave me the seal of approval.

Sydney, DeeDee, and I will be leavingfor New York on Easter Sunday. Once again, we will be staying at the Ronald McDonald. It won't be easy without Lynley or Graham and we will miss them terribly but I think it is probably the best thing for us to do. I know it will be toughest for Lynley. I can't really put myself in her shoes but I can imagine what it would be like if I could not go to New York with them. Not being with your child while they are going through treatment in another town is an awful proposition. I feel for the families that have not had the luxuries of being together as we have. There will be tough days ahead for Lynley.

On a side note - a cute story. We still have baby monitors in the kids rooms. I don't know why we still keep one for Sydney but we just never turned it off. The good thing about it is that we can keep Sydney from screaming to us from her bedroom and waking her brother. She has been trained, in that, she knows that if she needs something she can get up and go over to speak into the baby monitor for anything that she may need. It has been only recently that she has decided to use it as a walkie-talkie.

Several times throughout the day and night we will hear her voice come over the monitor. It usually starts with some rustling as we hear her fumbling to grasp the monitor to put it to her mouth. We then hear her speak with something like "Mommy, Daddy I love you. Please come here. I need a new milk cup because I drank mine. Mommy, Daddy please come. I love you, thank you very much." and then we will here rustling as she sets the monitor back down.

I wish I could play it for you. It is perhaps the funniest thing in the world to hear her words come over the monitor. First off, even though she is whispering on her end it comes out full blast on our side. But secondly, it is just so funny to hear her say the words. She always beckons for Mommy, Daddy. She always follows that with I love you. She then always says "Please" and then follows it with a request. If she realizes that her request is ludicrous, she will always follow whatever she is asking for with "because I love you very much" If, at this point, she realizes that she has spoken too long on the monitor or confused the issue she will always summarize what she needs as in:

"(rustling)Mommy, Daddy I love you. Please come into my room to fix the curtain to make it fit over my bed and not get stuck on my blanky because I love you and I want snuggles because I want to be with you because I love you very much. Mommy, Daddy please come fix the curtain. I love you, thank you very much. (rustling and a click)"

There are certain memories that will stay with me forever. This is one of them.

The next time you hear from us it will be from New York. Have a Happy Easter and don't forget your purpii.

4:25 AM 3/28/05

Welcome to New York City. We made it. We are now broadcasting from the 10th floor of the Ronald McDonald House where we have beautiful views and access to a ton of unsecured wireless routers. Yes, that means for a change (or at least right now) I am spared have to access the internet over my cell phone.

Sydney traveled well. She was the perfect little girl. Of course, she demanded to sit in the window seat but that did not bother me too much - she is short and I can see over her head. The flight was horrible. It was bumpy the entire flight but, no matter, Sydney just keep on coloring in her coloring book. It never bothered her a bit.

By the time we arrived at The Ronald's they were having Easter dinner so we slung our suitcases into the room and made our way down to the buffet. We were all starving and the meal was not only good but had the perfect timing. As the night drew on Sydney became wilder and wilder. To cap off the night we called Mommy and Baby Brother to tell them good night and that we missed them.

As you may recall it is a Monday at MSKCC. That means it will be a long day at the Day Hospital. We will be heading to the hospital at about 8:00 AM to begin the wait. I imagine it will be early afternoon before we are finished with our first day of treatment. Here is hoping for good things.

I have a purpose even when I am not lucky enough to have my bride beside me.

4:29 AM 3/29/2005

Good Morning! One day down. Sydney is doing well. She had a good first day back in treatment and it went really fast for a Monday.

I did not mention it yesterday but my mother is adjusting to the New York lifestyle rather well. She has fit right in and has been a tremendous help to me caring for Sydney. I was really interested to hear her perspective on the day hospital and her feelings about Sydney's treatment. My mother has always been a part of our lives throughout Sydney's treatment but she hasn't necessarily been in the room when Sydney was receiving treatment. Part of my interest is this - over time I feel that I have become used to treatment. I, like Sydney, have gotten used to every finger prick, needle poke, and pain from these treatments. Sometimes I feel (inside) that I have a lacodasical attitude about Sydney's treatment, that I just except it and move through it. Part of what creates this feeling is that I have seen Sydney endure so much, so well, that I figure if she can get through it and move on then so should I. Sydney has taught me to just keep putting each foot in front of the other and to keep a positive attitude.

I want to make sure that as other parents read my words that they understand what this treatment is like. I don't want to color it with a rosy hue but I certainly don't want to make it out worse than it really is. One of my biggest fears in going into any treatment situation with Sydney is not knowing what to expect. At the very least, whether you are making this treatment decision for your child or whether you are getting ready to start it for the very first time I want you to know what to expect for both yourself and your child. I know it can be different for everybody but I really believe we have had a fairly typical experience.

With all of that being said, Sydney had a pretty good treatment day. The pain started about 15 to 20 minutes into the infusion. She was uncomfortable and it was clear that there was some significant pain in her belly. We quickly gave her a full dose (not my choice, I would have preferred a half dose) of Dilaudid to curb the waves of pain. Within about ten minutes she was more comfortable but it was clear that some pain was still there. I, once again, got into the familiar position of weighing the benefits of giving more Dilaudid. Should we give her more to increase her comfort level or let her ride it out a bit. We chose to let it ride a bit. Again, we make this decision so that she will not be in a narcotic funk for the remainder of the day. I still honestly believe that Sydney is better off with a little more pain and a little less drugs. It sometimes feels like cruel and unusual punishment but once you have seen Sydney make it through an afternoon of Dilaudid funk it is clear that a little more pain is an acceptable tradeoff for her happiness and her ability to just be a kid in the afternoons.

At the completion of the infusion we saw a few small waves of pain hit her but nothing really too major. By early afternoon we had our Sydney back and spent the afternoon making art and playing.

We also received a wonderful Easter Basket for Sydney from some of our newly found friends here in New York. We spent about an hour playing with many of the goodies and writing thank you notes. The Easter Basket even included a picture of Graham from our last visit to Cafe Luka. Seeing her baby brother made Sydney very happy.

Well, enough. It is time to get back to the grind. Day 2 is ahead and we have a purpose.

3:14 AM 3/30/2005

Good Morning! Sydney had another good treatment day. We started the morning in the usual manner. We arrived at the Day Hospital and got settled into our new room. We are now being treated in room 9. It took a while to actually get her hooked up. Each day has its own idiosyncrasies but yesterday was fairly standard. She had a minor bout of pain about twenty minutes into the infusion. We quickly treated that with a half dose of Dilaudid. That was followed by about twenty minutes of "comfortable" pain. The last ten minutes of the hour long infusion brought with it another wave of pain which was treated with another half dose of Dilaudid. From that point on she slept fairly comfortably for the next hour or so. It would take us a while to get unhooked and released for the day but we spent the remainder of the time talking to and watching Mommy over the web. She would be fine until we had to turn the "Mommy TV" off so that we could go home.

You may be asking yourself, what exactly is "Mommy TV?" Well in an effort to keep Lynley informed and to keep her apart of the process when she can't be here physically, Lynley and I have used MSN Instant Messenger as a video conferencing system of sorts. With a couple $20 cameras we have been able to bring Lynley into the room with us. We can see and hear Lynley and she can hear us. This way she remains an important part of Sydney's treatment and she can help care for both Sydney and I even when she can't be here. She is able to sooth Sydney when the pain is intense and able to ask questions and help me to decide when we need to give another dose of Dilaudid or to be concerned about some treatment event. Now, in reality, we could also have two way video into our room but I am sure that would violate some HIPAA law, and I certainly would not tell anyone if I did it anyway. Let's just say that it is a wonderful use of technology in this case and it has been an invaluable tool in keeping both Sydney and Lynley comfortable with the fact that they can not be here together.

As a funny side note we had a little difficulty getting Sydney to take a nap yesterday afternoon. When we got back from the hospital a little after noon yesterday I failed miserably to get Sydney to take a nap. I did all the right Daddy things. I turned out the lights. I made the room dark and quiet. I even read her a little Dr. Seuss. By the way, when you are trying to get your child to go to sleep do not choose to read them "I am not going to get out of bed today?" Regardless, after I had done all of the things I could think of I sat on the bed with her and told her it was time to lie down and go to bed. She informed me that she would not take a nap or a rest. In fact, she said "I am not going to take a nap. I am not. I am reading a book and it is very interesting and I am not tired and I will not take a nap. I am NOT!" (Isn't Dilaudid great?) I told her that if she did not lay down and be a good girl that I would have to take one of her blankies away. She informed me very nonchalantly that "I will not take a nap. I am not tired. You can take away my blankies if you want but I will not take a nap. I am not tired and I am reading this book. It is very interesting and I will NOT take a rest. I will not because I will not." This bantor continued to play out in repetition for several minutes. Both Dee and I were struggling to keep our composure as both of us were on the edge of a complete laughter breakdown from her "cool-headed" obstinance. Knowing that I was not getting anywhere and that I needed to get on a conference call I left DeeDee in charge. Somehow she got the twerp to sleep. I guess Mothers just never forget their bag of tricks.

All in all, it was a good day, full of purpose and laughter. Not what you would expect from a treatment day? Well then you haven't spent enough time with my purpose.

4:40 AM 3/31/2005

In lieu of an update today I have redesigned Dad's Diary into sections. Hopefully. this will help many who have not been able to read my diary do to its length. My dribble has now exceeded some 600 pages.

Well, I can't just not have an update, so, here goes....

Yesterday went well - almost too well. Being the ever diligent Dad I tried to get ahead of the pain. At the first sign of an inkling of pain from Sydney I asked for a half dose of Dilaudid. It worked. It worked so well that everybody was beginning to suspect a HAMA. (Again, HAMA is the human antimouse antibody that the body develops to kill the 3F8 antibody.) We were all waiting with baited breath. Then, at about 10 minutes prior to the infusion ending, a wave of pain hit Sydney which required another half dose. I was kind of thankful to see some pain. I know Lynley's jaw will drop when she reads this but I am not sure that I am ready for a HAMA to develop. I know I should be doing a special dance but there is something in me that is saying that we are just not quite ready. Who knows, today could be the day I am wrong. Regardless, the drugs did there trick and Sydney was quickly into her usual post infusion slumber. All in all, a very good day of treatment.

Once we got back to the Ronald it was time to get Sydney to take a real nap. I got her on the bed and did my best to feign sleep. A few minutes later the phone rang. Our friend from Cafe Luka was downstairs. I left Sydney with my Mom and went down. Allie had brought by a beautiful teddy bear for Sydney. This was the first official gift for her inclusion in the Allie's Bear Club. It came with official documentation and a note explaining to Sydney that this was her bear to care for. It also included some special instructions which stated that the bear needed to nap everyday and was not able to nap alone. What a great idea. After thanking her profusely I ran back upstairs to present Sydney with this wonderful bear. I explained the story and that Sydney needed to help this bear take a nap. Sydney immediately went into Mommy mode. She new exactly what needed to be done. She started by putting the baby girl bear into a diaper. She then read her a story and tucked her into bed. There we lay - Daddy, baby bear, and Sydney - all ready for a nap. It was working perfectly. In fact, it must have because I fell right asleep.

About an hour and a half later a awoke. The bear slept. I slept. But guess what?? Sydney didn't sleep a wink. A little later I would re-explain to her that the bear could not sleep alone and that she needed to sleep with her. She pointed out that the bear was fine. "And, Daddy, she didn't sleep alone. She slept with you!!" Drats, foiled by 3 year old logic once again.

In Sydney's defense she did not sleep but the problem was more diarrhea than anything else. I am betting that it is the antibiotics and the afternoon seemed to be filled with multiple diaper fulls of the mushy stuff.

On a side note, Graham has an ear infection and a fever of almost 102 degrees. It seems that Sydney left him with a little treat to remember her by. The Dudester is on antibiotics and we are hoping for a quick recovery.

Well, it is time to go. I have to get thinking if I am going to outsmart my purpose today.

4:14 AM 4/1/2005

Yesterday was another great treatment day for Sydney. She spiked pain at 15 minutes and 50 minutes into the infusion. Both episodes were short-lived and treated quickly with two half doses of Dilaudid. We were out of the day hospital and on our way home a little after 11:00 AM.

On our way home, I felt like I was wheeling home a mental patient instead of a cancer patient. For those of you who don't know, Sydney has a very active imagination. Aside from her imaginary doggies and kitties and her imaginary friend (with the non imaginative name) Girl, she has also taken on the duty of feeding the birds (mostly pigeons) that we see on our way to and from the hospital with imaginary food. Now this is no ordinary imaginary birdseed. It requires approximately 10 minutes of preparation in the morning before we leave and it is placed into small containers (the plastic plunger covers from a syringe).

Regardless, as we walk back from the hospital she pinches out the birdseed and throws the imaginary stuff on the ground for the birds to eat (regardless of the presence of birds or not). The funny thing about it is that in her narcotic funk she flings the birdseed out rather violently. So, here I am pushing a stroller through the crowds on the streets of New York with Sydney madly throwing imaginary birdseed all over the place. Now, no one knows what she is madly spewing from her stroller so they all kind of dodge her and give us strange looks. Furthermore, on days were the effects of Dilaudid are really set in she will yell at everyone that walks by "Don't step on my birdseed! Stop it!" Of course, with the narcotic pulsing through her veins, her words are slurred and the statements are pretty much inaudible to the untrained ear. To get the full affect you really have to get a vivid picture of this in your mind and you have to think about what you would think if you ware walking by Sydney and I through the streets of New York. What would you think of this strange little pair? It is so funny to me I have to laugh. In fact, I do most of the way home. You and I know that in this narcotic state she is not controllable but, for the passers by, I must look like an awful parent.

To be honest, it has become a little highlight in my day. I know it shouldn't but, none the less, it has. From my perspective it is a break in the monotony and in this world you have to learn to laugh. It is all perspective. I don't know that there are any life lessons in this story but I can tell you that I certainly look at strangers differently as I walk down the street. You just never know what you are seeing.

You can learn perspective from this purpose stuff too.

5:27 AM 4/4/2005

I had a little bit of a late start this morning. My internal clock has not quite made the transition to daylight savings time. All in all, we had a pretty good weekend. Friday's treatment went smoothly and Sydney had her typical afternoon Dilaudid hangover. The end of the week is a funny time for a parent. After spending the better part of a week with you child under the effects of this irritable upper (Dilaudid) you start to doubt every grain of parenting skill that you have. Your child does not listen. She does not sleep (in our case, your results may very) and, generally, she is just a relatively unhappy sort. And then it comes - the weekend - and all of a sudden you get your baby back. Everything just falls back into place. She starts listening again. She starts taking her naps again. Most importantly, she is comfortable again in her skin. As a parent, you get a huge sigh of relief as you once again realize that it is not heredity (although you may begin to doubt that too during the week) or bad parenting. It was just the drugs.

Sydney had a pretty calm weekend. The weather was pretty bad so we spent the majority of our time indoors. On Saturday morning we visited the butterfly collection at the Museum of Natural History. Sydney had a great time watching the butterflies. The sanctuary was pretty small and their were only about 450 butterflies in it but the close quarters made for some close up views with many butterflies. All in all, it was nice but it paled in comparison to the butterfly sanctuary at the Botanical Gardens in Fort Worth. We spent much of the rest of the morning ogling stuffed animals. Sydney enjoyed the various animal exhibits but quickly tired. She fell asleep in the cab on the way home at about 12:30 PM. She would sleep the afternoon away.

Sunday was another lazy day and I was able to catch up on some much needed work. In the morning we had made our jaunt to Cafe Luca for breakfast, as has become our norm and one of Sydney's favorite activities. There we saw many of our New York friends and we got the opportunity to catch up a bit. Sydney was a giant flirt and spent much of her time making googly eyes at Mark and John two of the restaurants owners. We also had the opportunity to see Allie and although we had forgotten our thank you notes at home Sydney had the opportunity to thank her for her new teddy bear, Romy.

The rest of the day would continue to be lazy and filled with a nap, a morning trip to the "hands on" pottery place on the corner, a afternoon viewing of the movie "Robots", and some play in the playroom.

Today marks the first day of our second week of treatment at Sloan Kettering for this, her third round of 3F8 antibodies. As usual, we are anticipating a long day at the Day Hospital. My purpose is back to the grind.

4:13 AM 4/5/2005

Well, this is one of those mornings. Sydney woke up at about 2:15 this morning complaining of ear owies. We had finished her bottle of Amoxicillin on Thursday of last week and we thought we had this all behind us. Additionally, Dudely has been on antibiotics for five days for an ear infection and we are not seeing any improvement in him either. It seems that there is something in the water at the Dungan trough.

Sydney seems to be resting comfortably now but earlier it was certainly not the case. At the first sign of complaint I gave her some decongestant nose drops to help relieve the pressure. I would have given her some Tylenol but we were at the bottom of the barrel. This necessitated a trip to Duane Reade (the pharmacy down the street) for a new bottle of Tylenol. The first box of Tylenol that I opened contained a bottle with a broken seal and this recuired a second trip to Duane Reade. I am hoping that these will be my last adventures of the early morning hours. Currently, she is drugged and comfortable.

Yesterday was a strange day in 3F8 land. First off, it was a rather long day. The good news was that she did not require a GM-CSF shot. Her WBC was 44,000 and her ANC was about 22,000 (I know what you are thinking - How could an ear infection survive in those conditions? They can and, although I will not go into it now, are actually somewhat more likely). Sydney only required a half rescue dose of Dilaudid yesterday. The pain seemed to arrive on time but it really lacked the intensity that we have grown accustomed to. As has become our norm, we treated her for pain at the first sign. Her pain lasted about two minutes and then she would remain silent (or argumentative) until the end of the infusion. At the end she started complaining of pain again but, more prominently, she was just out of her gourd. For some reason the Dilaudid really took a good hold of her even though she had half as much as usual. She was irritable, inconsolable, and demanding.

My mom and I have a theory about the Dilaudid. Yesterday, Sydney, even with much cajoling, elected not to eat breakfast. Although we continually offered food to her, she simply would not eat. Our theory is that this is the reason that she was so unmanageable on the Dilaudid. Today, we are going to see if our theory rings true. I don't know how we are going to do it but rest assured she will eat a large breakfast. It will be interesting, both for us and our other fellow 3F8ers to see what effect a full tummy has on the treatment.

Well, I am off. Even though I have already been up for about 2 hours, I am behind. I have to get ready for a purposeful day.

5:52 AM 4/6/2005

Ouch! I learned a new rule about the 3F8. If your child has an ear infection (which Sydney really does) the 3F8 treatment will amplify any irritation. That is not a casual assumption. It is fact. In fact, it is so much a fact, our friends at Sloan warned us about the possibility. Well, to put it short, it did. Sydney had a painful day and I honestly do not know what was worse, the tummy pain or the ear pain. Actually, I do, the ear pain was far worse simply because it lasted much longer.

Sydney slept until well after 2:00 PM at the Day Hospital. Minus some discomfort from her ear, we assumed she was as comfortable as she could be. When she woke up we took her back to the Ronald where she slept, with intermittent cries until about 7:00PM. After that she seemed to recover. I had her doped up pretty good but she felt good enough to snack on some food and spend some time cuddling before we all hit the sack at about 9:00PM.

She appeared to sleep comfortably throughout the night.

I am not looking forward to today.

It will require a lot of purpose.

4:32 AM 4/8/2005
I apologize for a missed day. I was under the weather and then overslept (or not) due to a sneaky little alarm clock fiddler. Yesterday I woke up with a horribly upset stomach which eventually turned into a throbbing headache and a queasy feeling all over. I spent most of the time huddled over my porcelain friend trying to get whatever it was in my body out because it surely did not want to stay there any longer. Eventually I was able to gain enough composure to make it to the pharmacy where a couple of quickly purchased OTC pharmaceuticals got my body back in line. By about noon, I had totally regained my composure although the thought of food still sends a chill through my spine.

Sydney on the other hand was no worse for wear. As I had mentioned earlier, she was sneaky. At some point just before we went to bed Sydney reprogrammed the clock in our room. The clock was reading roughly one and half hours ahead. So, as usual, I woke my mom up at 6:00 AM (real time - 4:30AM). She got showered and dressed as usual and while putting on her watch noticed that it was roughly an hour and a half behind. Having never replaced the battery in her watch in the two years since she had purchased it, she assumed that it was finally loosing its umph and set it to the clock in the room.

At 7:00 AM I woke up Sydney. At 7:45 AM I administered her daily GM-CSF shot. At 8:00 AM we were out the door and on our way to Sloan for the days festivities. We arrived at roughly 8:15 AM. We were upstairs by 8:30 AM. My, my was it a quiet day at the clinic. We checked in and made our usual banter with our friends at the desk and then made our way back to room 9, our room for the week.

As DeeDee and I talked about it and reviewed the lack of people around we finally started to put two and two together. We were there. We were on time. Then the light bulb went off. We were roughly an hour and fifteen minutes early. We actually arrived at the clinic sometime near 7:15AM. Needless to say, even in my dilapidated state, we had a very good chuckle. We had been twerpified.

Sydney's treatment did not start until about 10:00 AM. She tolerated it fairly well with the pain waiting to arrive near the last ten minutes of the infusion. Although the timing of her pain was a little different than we had been accustomed to we quickly treated it with two half doses of Dilaudid. She fell asleep and we would remain in the room, Sydney resting comfortably, until nearly 2:00 PM.

On the way home from the hospital Sydney elected not to feed the birds. I know what you are thinking - "Good for you Dad you finally got the opportunity to walk home without a mental patient spewing imaginary birdseed at the passers by!" Well, hold on. I was not so lucky. Instead of spewing imaginary birdseed Sydney decided to walk her imaginary dog. Well this doesn't seem too bad. What is so strange about seeing a child sitting in her stroller holding an imaginary leash? Well, I will tell you. That is not so bad in and of itself. The problem is when the imaginary dog misbehaves and then your three year old starts looking over her shoulder towards the side of the stroller screaming "No, bad dog, stop it!! I said NO" This little routine happened no less than every ten feet for the 5 block walk back to the Ronald.

I guess you win some and you loose some.

After today's treatment we will be hopping on a plane and heading back to our dear Mommy and Dudely. We expect to arrive in DFW at about 8:00PM. We are really excited to get home and have our family back together.

Thank goodness they don't let dogs on planes.

They don't let dogs on planes, right?

Oh, this will be a purposeful day.

4:23 AM 4/11/2005

Home Sweet, Home!! Sydney, had a good last day of treatment and then, just as soon as she was denoodleified, we finished packing and headed back home. Sydney is doing well. We have a few lingering issues to deal with this week but, for the most part, she is operating at full capacity.

This morning Sydney will begin 14 days of Accutane. Based on her performance during the last round, I am hoping that it will go smoothly. We have mentioned the fact that she will be starting to take pills again and she seems utterly excited about the idea.

This week we will be having a few items checked out. Although her ear infection appears to be on the mend we will be meeting with our oncologist team her to have them take a look at it to make sure we achieve a full recovery this time around. Additionally, she still has several small bumps on her hands and we would like for Dr. Eames to give them the once over to hear what her opinion is. Finally, Sydney's ears and hearing aids seem to be swimming in ear wax. We are hoping to meet with the audiologist team and perhaps have her tested again. Lynley and I are both somewhat concerned about her language development. There is no doubt that she is a clever kid but we want to make sure that she is meeting the necessary language milestones given her hearing loss.

I can not tell you how good it was to get home. My sweet little Dudely is now a full time walker and has completely given up crawling. I know it was just two weeks but it felt like a lifetime. It is amazing how much change about these little critters when they are this age. Graham is talkative and his vocabulary is mesmerizing.

Dear God it is good to be home.

Well there is a mountain of life and work to climb now that we are back in town so I must run. I am going to through a bag of purpose on my back and start hiking.

5:19 AM 4/12/2005

The first few days back to reality are always swamped with playing catch up. It becomes a balancing act. There are only so many hours in the day and there are always more things to do than there is time to do it in. Yesterday was no exception. It was a mad dash to get everything scheduled while we are in town. So far it has been one day and I can officially say that we are booked until we leave town again on May 1st.

Sydney had a pretty good day. We kept her home from school on the first week day back from treatment but today she will be heading back to see all of her wonderful friends and teachers. I anticipate that she will go for the remainder of the week but will have a little hiatus midweek for a trip to the clinic. She spent much of yesterday playing with her little brother.

Yesterday she officially started another round of Accutane. She has gained weight over the last month and she is now up to 100mg per day. This means that she has a 40mg pill and a 20 mg pill in the morning and another 40mg pill before she goes to bed at night. This is up 10mg from last month. This may not seem like a lot to you, but it is significant to us. She is now almost 35 pounds and a little over 3 feet tall. For those of you that like to calculate Accutane dosages this gives her a BSA of roughly .63.

Sydney is still on medication for her ear infection. All was appearing to be on the road to improvement until last night when she complained of another ear ache coupled with a headache. Now, it is always difficult to tell when she complains right before she goes to bed whether it is real pain or whether she is just trying to keep us from leaving her room. Last night we gave her the benefit of the doubt and medicated her with a little Tylenol and some decongestant. You just never know. The pollen in the air in Forth Worth is like a dust storm right now. Both Lynley and I are having some fairly severe allergies. Could Sydney just have some congestion from the same things we are experiencing? Sure! But that doesn't mean that Lynley and I don't cringe every time she complains of pain. The NB monster is always there in the back of our minds and whether we like it or not it is the first place your mind turns. So, to make a long story short, we are worried. We are bothered that she has pain in her head. But, rationally, we are just hopeful that she is going through the same thing that half of the people in Texas are during this time of the year - allergies.

Well, I am off. I am hoping to focus the rational side of my brain on my purpose today.

5:05 AM 4/13/2005

Another fine day. Sydney's first day back at school went really well. It completely wore her out. She is just not used to the hustle and bustle of school and it seems like the first days back always leave her mentally and physically drained. She was now completed two days of oral chemotherapy and seems no worse for wear. We have started to cover her in aquaphor and vitamin E oil to stave off the deterioration of her skin for as long as possible. It seems like the earlier we begin to protect her skin the better off she is in the long run. This round of pill taking is also going extremely well. She takes them just as soon as I put them down on the table but the new custom of me not being able to watch her remains. Although I really do watch her out of the corner of my eye I always wait about a minute after she finishes them before I go back over to ask her were the pills went. She then, of course, says "I swallowed them Daddy!" and I act completed shocked and amazed. It seems to be a fun game for her and it is working well.

On another note, my son. Now I love my little Dudely terribly but I am starting to discover that he is more like me than I ever imagined. There are two things Graham is never supposed to do. Yes, he is one year old, and I think have 2 rules is totally acceptable. First, Graham is not allowed to stand on the bed or on chairs. It is a behavior that is strictly disallowed. Graham knows this and let me just tell you how well. A perfect example occurred yesterday afternoon. Graham and I were out in his playroom. He asked for some juice - a.k.a. milk in Graham speak - so, I placed him in his favorite chair (sitting) and turned on one of his favorite Baby Dolittle movies to occupy him while I ran to the kitchen to get him a cup. He seemed complacent so I ran to the kitchen. On my way back I kept hearing him scream "Sit, sit, sit!" I picked up my pace and ran out to the playroom. There he was, the little Dudester, standing on his chair with a grin end to end, screaming at himself to sit. As soon as he saw me he plopped back down and went back to watching the movie. At the time, I was a little curious as to whether my eyes were deceiving me. So, a few minutes later I stepped out of the room and stood by the door. Sure enough, within a minute, he was back standing on the chair yelling at himself "Sit, sit, sit!" Once again, I immediately stepped back in the room. He plopped back down and went right back to watching his movie - little twerp. I am surrounded.

The second thing Graham is not supposed to do is to play with the television sets. In fact, he is sternly corrected every time he makes a move toward them. So, guess what he does now? The little snot will correct himself for us. As he gets within about a foot of a television he will start telling himself "No, no, no!" Now this would be a great help if he would not play with the television but, apparently he does not listen to himself either. He will go right ahead and push the television buttons all the while telling himself "No!" You might be thinking that he does not know better. I can tell you first hand that we he turns to me and gives me that great big smug smile right before he fiddles with the TV that the little dude knows better. Yep, he is my son.

Well it is time to be off. As usual there is a mountain of work to get through and I will need to be diligent if I plan to outsmart my purpii today.

5:15 AM 4/14/2005

Perhaps yesterday was not as good as others. Just as quickly as I had mentioned how well this round of Accutane was going it went south. Sydney is showing some signs of the increased dosage. After all of the therapy that she has done we get used to it. We think we know what to expect. You know, been there - done that. We sometimes forget how serious this is and that the drugs and the therapy our hard on our baby girl. I guess part of it is that Sydney is so strong that she gives us a false sense of security. At times she is so happy and playful that it slips from our minds.

This round of Accutane is different and it is hitting her harder. The mental effects are more pronounced and they seem to have hit harder than usual. It is as obvious as night and day to even the casual observer. The drug makes her life far more difficult to cope in. It is somewhat like the Dilaudid hangover in that she has difficulty coming to terms with the world, but it is different in that she is rational now. She cries easily and becomes frustrated easily. You can tell something is up and, although she can't really describe her feelings, it is almost like flashes of depression. Then, just as quickly, she seems back to normal for a while. You might be saying "hold on, Mark, we are talking about a 3 year old," but I can tell you it is different. It is not 3 year old angst. It is not misbehavior. Two days ago a line was drawn in the sand and it is obvious that we are dealing with a different person. It is the Accutane.

We are also seeing some other early side effects of the increased dosage. She has experienced nausea and has vomited on occasion. She is also complaining about sporadic pain in her belly. Now all of this might be shocking. You might be thinking that something else could be the culprit. I did, too. But then I reread my diary and it became clear that this is the Accutane. We experienced these same symptoms last year when we had an increase in dosage.

Thankfully, today we get to visit our friend Dr. Eames and perhaps she can help shed some light on what is going on.

I need to comfort my purpose. But I don't know how.

5/27/2005 4/15/2005

We had a great visit with Dr. Eames. As always, she spent some quality time with us and I am sure that this visit will be documented as a "long conversation with Sydney's parents" in the Medical Annals of Sydney. That is one of the things that I am so entirely appreciative to her for. She takes the time. It isn't that other oncologist don't, it is just a feeling that she leaves both Lynley and I with. Somehow, after talking with her we always come away feeling stronger, more informed, and that we have a plan. She is one incredible lady and has been such a strong leader as we have taken Sydney through this journey.

Lynley and I don't always agree about treatment decisions. Heck, we don't even always agree on dosing her with medication. There have been many times throughout Sydney's treatment that Lynley and I have had different opinions on a course of action although we both wanted the same end result. This is one of the greatest reasons that Dr. Eames has been so invaluable to us. No matter what is going on, we always feel that when we come out of a meeting with her that we are moving in the same direction. We have a unified plan. She makes Lynley and I a better team.

Dr. Eames inspected Sydney thoroughly. Her ear appears to be on the mend. She described the ear as looking healthy with the exception of the ear drum which was a little "shrunken in" (at least I think she said that) which is a sign of healing. She seemed to think that it was well on the road to recovery. As far as the nausea, vomiting, and mood swings, yep, she had all those things and they are expected side effects of Accutane. We are probably seeing them this time around due to the increase in dosage. She described it as passing Sydney's "side effect threshold" and explained that they see this commonly when kids receive a dose increase. Regardless, just seeing Dr. Eames yesterday apparently made Sydney better because we have seen no further signs of nausea.

So, it was a good day. Sydney is still experiencing mental highs and lows but she seemed to cope better yesterday. We are happy. We are together - One big happy Purpii.

5:05 AM 4/18/2005

All in all, it was a pretty good weekend. Sydney's skin is started to deteriorate but it could be much worse. We continue to slather her in a concoction of Vitamin E oil, Aquafor, and petroleum jelly. She constantly looks like a grease monkey but we have seen the other side of Accutane and are quite complacent to have a greasy girl.

There was nothing really exciting about our weekend. It was normal which, in our lives, is something to get rather excited about. On Friday evening, we turned my birthday party into a kid event. We went with the Robertson's to one of the kid's favorite Mexican Food restaurants down in Cowtown. I really believe that when you have kids a switch turns off in your brain. I was more happy having a kid event with 4 twerpful kiddos than having an adult event. I am not saying that I want to spend my birthday at Chucky Cheese next year but I am happier when they have a good time and the whole family can just relax a little. It was a great birthday dinner.

The weekend started out with great plans of going to the zoo or visiting museums but none of it ever materialized. The kids seemed happy at home, Lynley got a chance to relax a bit, and I got to finish some belated "honey dos" on the guest house and get some office work out of the way.

Yes, it was a good, quiet, normal, average weekend for my purpii and I.

5:53 AM 4/19/2004

Well, as good as the weekend was, Sydney had a tough time Monday morning. As soon as she woke up, she was nauseous. We battled the nausea for about twenty minutes. We tried to keep her mind occupied and on other things but it was to know avail. When I brought her down the stairs she exploded from both ends. This was not the way to start a new week. Although we were pretty sure that it was the Accutane affecting her and nothing else we opted to keep her home from school where we could keep a closer eye on her.

I ran into the office for a couple of hours and then returned home to find that Sydney had completely recovered and had no further incidences. She was fine for the rest of the day. I think this morning we may give her some preventative Vistaril just to keep the morning oogies away.

Yesterday was a Monday for all of us. It was fast paced and busy as usual. For me, however, it is becoming more manageable. At some point I decided that I have to have my priorities in the right order and I can only do so much. I have begun to micromanage my schedule and I am dedicating myself to sticking to it. It is keeping me far more relaxed and, at the same time, allowing me to juggle while watching the balls. I am dedicating one hour a day to family matters. Now, this doesn't include time with the kids. This is time that I spend at work to deal with insurance, financial issues and the like. I am also using this time to prepare for Snicklefritz. I know it seems like it is a long way off but in reality I will only have about two weeks at home before she is here. We have to have a place for her to sleep and call her own and we have to have all of life's necessities in order to begin. With Sydney's and I's trip looming over the horizon (less than two weeks) there is much to be done.

Well, that is about it. Busy and busy and fun. My purpose is about to get bigger.

5:47 AM 4/21/2005

I missed yesterdays update. As soon as I woke up, I was out the door to work. It was too bad really because it was one of those days where we had a first. Ever since we started going to New York Sydney has complained every night that she does not want to sleep alone. Now, I am guessing that this is pretty normal behavior but it is compounded by the fact that when we are at the Ronald McDonald House she gets to sleep with Mommy or Daddy. It makes sense that as soon as we get home that she would want the same thing. So, two nights ago she decided that she wanted to sleep in baby brother's room. Ordinarily we would have probably said no but we are in an interesting predicament.

You see, our house is a 4 bedroom house but one of the bedrooms is out in the guest house. When Lynley got herself pregnant she obviously did not concern herself with thoughts of things like sleeping arrangements. Okay, you might be saying, hey Mark, you are responsible for getting her pregnant and you should have thought it through too. Well, I still maintain that it is her fault for being so darn sexy. I have enough going on in my life with a child with cancer. How could I possibly be responsible for dealing with issues like that. Regardless, we find ourselves about a month ahead of the arrival of our newest baby girl and one bedroom short. We know have to consider the multitude of possibilities.

Well, it seems that Sydney made the decision for us. We really had no intention of moving her from her room but she seems much happier, at least for the time being, sleeping on one of the beds in Graham's room. It may just work out, for the time being at least, that our newest addition will live in Sydney's room.

Sydney and Graham have had a blast during the last two evenings. Yeah sure, they have had trouble going to sleep but once they do they are both sleeping long and comfortably. It is hilarious to just sit and listen to the monitor in their room. It is a steady stream of jabber. Lynley and I play a game of trying to figure out what they could possibly be doing or talking about. One nice feature is that whenever Sydney gets out of bed (she is not supposed to) Graham will start yelling "Up, up, up!" He is trying to convince his sister to get him out of bed but it had the neat little side effect of letting us know that Sydney is up and about. So right now, I am seeing a couple of great benefits to this new sleeping arrangement. I don't know how long it will last but Lynley and I are willing to give it a shot for Snicklefritz. After all, we don't want her sleeping in the bathroom do we?

Wow, a purpose can be a fun thing to have!

5:52 AM 4/22/2005

Yesterday was a clinic day. We had blood drawn from Sydney. It was Fedex'd overnight to Sloan Kettering to have a HAMA test run on it. We do this between every trip to New York to determine whether Sydney is ready for her next round of treatment. While we were there Dr. Olivera gave Sydney a checkup. It appears that she continues to be on the mend. Her right ear still contains some fluid but other than that looks healthy. We will just sit and wait and hope that it does not rematerialize into an infection.

This will, most likely, be our last full weekend at home before Sydney and I go back to New York. I generally have a pretty positive attitude about going to New York but this time I really am kind of dreading the trip. Lynley is firmly into her third trimester and I know she can really use my help. Additionally, I don't want to even think about the chance that she could give birth while I am not here. I know she could do it with out me but I must admit, I am pretty good at birthing babies. After all, who will hold up her right leg and tell her when to push. Who will make the appropriately funny little comments to help her get through the pain? Who will get her ice chips? My fear is that without me there who will do all of these critically important jobs?

Okay, so I guess I am kind of disposable in this whole birthing process but it still doesn't change the fact that I want to be there. It is my job and we do it as a team. It is something that Lynley and I share together and I can't fathom not being there. I can assure you that by body may be in New York but my mind will be at home.

I will have a split purpii.

4:28 AM 4/25/2005

Last night Sydney swallowed the last two pills of Accutane for this round. We now have two days to rest and relax before we start her GM-CSF shots in preparation for her next round of 3F8 antibodies. Sydney really held up well through this round of Accutane. In retrospect, I am really pretty shocked that she faired so well after the rocky start. The nausea seemed to go away with the second week of treatment and her skin really maintained itself well. She still has some blotchy areas but she looks pretty good.

The weekend was a quiet one at home. We began our days off with a little surprise visit on Friday afternoon to see Lynley's OBGYN. Lynley has really slowed down over the last week and tires easily. At the end of last week she was starting to complain of twinges of pain. She never thought that they were real labor pains but knew that she had better have them checked out. After a thorough inspection and a couple of tests it became clearer that she was experiencing some Braxton Hicks.

Just to be on the safe side, I told Dr. Quist, her OBGYN, that it was her responsibility to keep that baby in for another three weeks. I also asked for at least 21 days notice before the birth so that I could make plans to get back from New York if needed for the birth. After all, we spend enough on plane tickets, a last minute flight out just would not help us out. I then gave her the okay to sew Lynley's legs shut if it became necessary. I still don't know if Dr. Quist gets me because I think she took me seriously.

The rest of the weekend was far less exciting but busy none the less. Lynley put me back to work on the guest house during the kiddos naps and the remainder of the time was spent running errands and doing family things. I didn't even turn my computer or my cell phone on over the weekend. That is a major step for me.

Well, I am off to work. With an ever expanding purpose I have to pay the bills.

4/26/2005

It is my 8th anniversary of marriage to my wife. We have now been together for over 14 years and we made it through the seventh year without even an itch. I am really proud of us. I know lots of people that have been married for eight years but, then again, they weren't married to me so I think Lynley deserves some extra special kudos. What can I say, I am a lucky, lucky man.

We have literally been together through thick and thin and through better and worse. For as rough a road as we have had, we have stuck together by each others side. She continues to be my rock and my soft place to land and I hope that I have been the same for her.

I love her with all of my heart and feel blessed each day she is in my life. I only hope that in the eighth year I can be as much to her as she is to me.

After all, she is my purpose too.

5:58 AM 4/27/2005

A little of a late start this morning. I guess it must be all of that wild partying I did with my wife last night. Okay, okay we were in bed by about 9:00PM - sleeping. But, that doesn't mean we did not have a truly wonderful anniversary. It was the first time in recent memory (heck, it was the first time in ancient history) I can remember that Lynley and I went out alone without the kids. I honestly cannot remember the last time we did that. We have been so focused on life and the kiddos that we just never took the opportunity. We both honestly just never thought of going somewhere without our purpii. It was so strangely wonderful not to have to interrupt every sentence of our conversation with "No, don't do that!", "Stop banging your spoon?", "Don't put food in your hair.", "Eat your vegetables!", or "Yes, Sydney, I love pink bunny rabbits, too."

At dinner Lynley and I talked a lot. We talked about kids, life, money, each other, and pretty much everything under the sun. We were like two kids in a candy store - grabbing up every piece of adult conversation morsel we could get our hands on.

Of course, being our anniversary we had to discuss mushy stuff as well. That is when it dawned on me. Both Lynley and I count on our marriage to be there. No matter what has happened or what will happen in our future our marriage is our solid ground. Everything in the world can fall apart around us but that one place we stand together is and always will be solid. We both have our issues. Individually, we are both - well - weird. But together - together we are something strong. Throughout all of this journey there have been many times that we have disagreed. We have disagreed about treatment decisions. We have disagreed about money. We have disagreed about how we raise the kids. We have disagreed about what we are going to have for dinner. Individually we have different opinions and thoughts. We are different people and, in some ways, polar opposites. I am an optimist, she is a pessimist. I never worry, she is a worrier. I am a slob, she is a neat freak. I make quick firm decisions. She is a thinker. I love change. She despises it. Yes, we are entirely different people.

The beautiful thing is that when we are together in our marriage - we are together. We appreciate each others opinions and when we make a decision in our marriage (whether we like the ultimate decision or not) we both support one another and our decision as if it were our own. It is because it is. The marriage between Lynley and I is actually made up of three people. It is made up of Lynley. It is made up of me. And, it is made of the third person who is half Mark and half Lynley. The third person is our marriage and our marriage always settles our disputes. It always wins our battles. And it always helps us make good decisions.

That is why I am a lucky man.

My marriage is my purpose too.

4:28 AM 4/28/2005

The reality that we will be leaving again soon is starting to set in. The time just seems to fly by so fast. I usually don't mind going to New York. When I was traveling with Lynley and Graham it never really seemed like a burden to me. I could always just kind of write it off in the back of my mind as a little mini vacation. Yes, I know there was more to it than that. We also went for cancer treatment. But, in the back of my mind it was always okay because we were together and we could make the best of it. This time, though, I am really dreading the trip. I don't want to leave Lynley and Dudely. The last few weeks have been so wonderful and relaxing compared to many of our other stints back at home. I guess you really learn to appreciate what you don't have when it is taken away from you for a few weeks.

So, yes, I am a little sad about going back. I don't want to even discuss the possibility of an early Snicklefritz delivery. Let's just say that is not an option.

Last night Sydney started her first GM-CSF shot for this round of antibody therapy. This time she will receive GM-CSF subcutaneously until we get to New York but once we are there she will switch to receiving it by IV. This is one of those sneaky things that they snuck into the protocol. Regardless, for some reason, on the fourth round of 3F8 antibody treatment you receive GM-CSF by IV. I am curious as to why. I am sure it has some purpose to the research and I will be sure to bug Dr. Kushner about it. The good thing about the IV delivery is that Sydney will not have to endure a daily shot. The downside is that the IV infusion takes about two hours and that has to happen at least an hour before we begin the antibody treatment. Yep, we are in for some long days this time around.

Well, I must be off. I only have 3 more days to appreciate my full purpii.

4:13 AM 5/2/2005

Hello New York! Well we arrived and I have to apologize for not writing in my diary last Friday. It was not that I did not have anything to say. Unfortunately, one of my clients had some serious issues which threw us into high gear. Between Thursday and Friday I worked close to 30 hours. It was not the way I wanted to spend the last few days with my kiddos before our trip to Sloan but duty called.

The good news is that we are here and we are safe. Once again, my mother came with me to help care for Sydney. I am extremely lucky. I know that this can be done alone but I am tremendously thankful for her help. It certainly makes this hiatus more bearable and enjoyable for everyone.

Today we will begin our first treatment of antibodies for this, our fourth round of 3F8's. As I mentioned last week this round will bring extremely long days for Sydney at the day hospital. I still do not know the answer as to why but for this round she will receive GM-CSF by IV. I know it will add approximately three hours onto our day but other than that I really do not know the value of it. Then again, I am not a researcher.

A little funny note before we go. It appears that we are on the outs with the Robertson's - yes the family of her beloved Truman and our god son Preston. Last Thursday there was quite the scuffle at school. It all started out simply enough. The little girls in Sydney's class were all playing princesses. They had found some princess costumes and were all dressed up to the nines. Well, everyone but Sydney. It appears that they were one dress short. Sydney was heartbroken. She really wanted to dress up like a princess in her white princess dress but someone had already taken it and had no intention of taking it off. Yes, it was Preston. Preston had taken the beautiful white princess dress and was wearing it. Luckily, the teachers scurried into another room wear they were able to find another princess dress for Sydney.

Now, I would love to talk to the Robertson's about this. But, how do I call up my best friend and ask him to keep his son from stealing and WEARING my daughter's princess dress. Now, sure they were able to find another princess dress for Sydney but that really isn't the point. My poor little daughter was still heartbroken that it wasn't the white princess dress.

So, until I get an official apology. I am not talking to them. Well , of course, until he calls me. To be honest, I can't wait. This is going to be one of those really fun conversations to have with your best friend. I know that when Graham is the same age I will probably have to face the embarrassment of my son stealing some little girls princess dress and wearing it but until then - I am going to milk this for all it is worth.

Wish, us good luck. We are back to our purpose.

4:22 AM 5/3/2005

Good Morning!! Sydney's first day of treatment this round was pretty acceptable although it was very long. We were there from roughly 7:45 in the morning to about 5:00 PM. That was a very long day for our baby girl. The good news is that she seemed to tolerate her day a little better - mostly because we stayed at the hospital and let her sleep off the effects of the Dilaudid.

Sydney had a typical treatment as far as pain was concerned. It started to set in at about the thirty minute mark. We fought to control it for the next 15 minutes or so and then she seemed to tolerate the rest of her day fairly well. There were sporadic moments of pain but it was certainly more bearable.

Once we arrived back at the Ronald Sydney was in a far better mood but unfortunately we discovered a new symptom that Lynley and I are struggling to figure out. Basically, it stings when Sydney urinates. Lynley and I sent are brains fast forward, fast reverse, and fast in between to try and surmise what was going on. As we both remembered (although not clearly) it can be a side effect of one of the drugs she is taking. We are hoping that it is that simple. Of course, it could be a plethora of other things as well. Sydney's day was also complicated by a lack of urination (because of the stinging? We do not know.) although she did not appear to be retaining fluid. So, I guess it could be the kidney's although I would expect to see water retention. It could also be a laundry list of other things from a bladder infection to stingingpeeitus. Not that everybody wants to know but she also had an extremely large (and I mean extremely. Remember, I am a father of a cancer patient and I have seen some strange things but this was ridiculously huge.) bowel movement before she went to bed.

I was happy to see that she rested comfortably throughout the night. I had anticipated that we would be up most of it but was pleasantly surprised.

Today we will bring our evidence before our doctors and hope that they can make some sense of what is going on. Perhaps, there might even be a simple solution to bring her some relief.

Until then I am off. I am missing the rest of my family tremendously but my split purpii remains undaunted.

3:15 AM 5/4/2005

Good Morning! As it turns out, Sydney’s case of stingingpeeitus actually appears to be a more benign derivative of the disease called phantomstingingpeeitus because we have not seen hide nor hair of any pain since we last spoke. As speculated, the doctors ordered some urine tests and a urine culture and, cross your fingers, everything appears to be okay so far.

Sydney had another excellent treatment day. Yes, there was pain and it was pretty intense at times but she really tolerated it pretty well. Her pain really set in at about the thirty minute mark. We gave her a half dose of Dilaudid which seemed to bring her some relief within about 15 minutes. She rested fairly uncomfortably until the infusion was over at which time she had another wave of pain which we handled with another half dose of Dilaudid. Predominantly she had some tummy pain but we also saw some glimpses of leg pain and, a first, mouth pain. You may be saying – mouth pain – that seems odd. I thought so to but it was apparently a fairly common thread with many of the kids that were receiving antibodies yesterday. There must be something in the water – literally.

I have decided that I really prefer these long days at the clinic for Sydney. They can be a little boring for us parents but it really seems to be of benefit to Sydney. With the extra time she gets to sleep off the Dilaudid and by the time she is ready to leave she has almost fully recovered. As much as I sometimes miss the joy of strolling home with a screaming child madly feeding pigeons with imaginary birdseed, this is a great alternative. Her afternoons and evenings have been marked by happiness and niceness. It is quite a unexpected treat.

On another note, I am in big trouble with Lynley. Apparently it is not appropriate to talk about the size of my daughters bowel movements in my diary. I got a stern lecture on the appropriateness of my own internal thoughts. I tried telling her that I thought the size of Sydney’s poo was medically relevant to her case of stingingpeeitus but she would have none of that. So, hereforth and henceforth, I am not aloud to discuss the size of Sydney’s poo poo in my very own private diary.

She must realize that I will rise to this challenge – doesn’t she.

Ironically, I now have a heaping load of purpose (And Lynley, everybody knows what type of load I am talking about.)

P.S. I love you honey bunny!

4:19 AM 5/5/2005

Sydney had a tough go at it yesterday. The pain was more intense than usual and it seemed to linger well after the infusion. In the end it required 3 half rescue doses of Dilaudid and, with the exception of about a thirty minute window, she had pain from about 15 minutes into the infusion until about 2 hours afterward. As always she was a trooper but the poor thing had a really rough day. I really do not know if it is related but she did not eat very well yesterday morning. Perhaps today we will try and see how a full tummy effects her levels of pain.

The extra Dilaudid stayed on board until well in the evening. This was our first experience with Cybil this trip. She was hard to please and cried at the drop of a hat. This behavior continued from about 2:00PM until 6:30PM at which time she turned manic. She began running all over the room, jumping on beds, and doing just about everything she knew she was not supposed to - all in high gear. At 7:30PM we finally settled her down enough to get her tucked in bed. From what I can tell she slept comfortably with no visible our audible signs of distress.

All in all, it was a tough day for Sydney but we all know it could be much worse. So, we are thankful that the day is done and that today can be the start of a new beginning.

There is another family here at Sloan that we are particularly close to. Their son Ryan has had a tough road and based on what the doctors have said it is about to get harder. Ryan has been fighting this from nearly the time of his birth. Although he was diagnosed at a young age when Neuroblastoma is "supposed" to be more likely to be beaten, Ryan has had a continuous fight. During the last few rounds of chemo they have had mixed results and although the chemo has helped to shrink the existing sites of Neuroblastoma new lesions have appeared. Complicated with fevers and a constant bombardment of treatment little Ryan is back into the hospital. Over his lifetime he has been treated with just about every chemo known to have any effect on Neuroblastoma and their family is running out of options. They still have a chance to win but they need things to start falling in Ryan's direction. They need our prayers and hope. They need to know that they are not alone and that we all keep them in our hearts.

I once again find myself angry at this unrelenting disease.

To say that I have a purpose just does not seem to be enough today.

4:03 AM 5/6/2005

Well, yesterday was a better day all around. Sydney's pain was far more tolerable and, with the exception of some nausea in the afternoon, she handled the treatment perfectly. I don't know whether it is me but I just don't remember the last few rounds of treatment and it sure seems like everyday seems to bring something a little different. We have had differences in pain location and intensity, dilaudid side effects, nausea, hives and, finally, the amount of birdseed she madly throws on the way back from the hospital. I remember these differences between one week and the next but it is really strange to see them one day to the next. Perhaps, I should reread my diary.

In the afternoon Sydney was fairly listless. She complained of nausea until about 6:00PM and although she never threw up she always felt it better to have a bucket close by. She spent much of her afternoon at the hospital but once we convinced her to go back to the Ronald she chose to sit in my lap to snuggle and watch television.

This is our last day of treatment this week and we are scurrying to make plans for the weekend. Saturday is supposed to bring rain but Mother's Day (Sunday) is supposed to be beautiful. As always, we have a laundry list of things that we would like to accomplish.

Here is hoping for a nice uneventful weekend of purpose.

3:57 AM 5/9/2005

I hope everyone had a happy Mother's Day. We have postponed ours until we get back with Lynley and Graham. Sydney had a good weekend and although all of our plans did not turn out as well as we had hoped we had a pretty relaxing time.

Sydney's treatment on Friday went pretty well. In all due honesty it was pretty non-memorable because, as I sit here reflecting upon last Friday, I really don't recall anything special. I guess we have been tempered by enough 3F8 days where they can seem to run together. If you ask me, I think a non-memorable treatment day can be one of the best kinds to have. We now sit exactly one week before we leave with only five treatments days to go before we finish this round. Time really seems to fly fast when we are in New York.

Over the weekend we visited the Disney store. Sydney had the opportunity to spend some quality time with Tigger and Pooh and we even got some pictures of her and her overstuffed pals. We spent about two hours in the store but I think Sydney's favorite thing to play with was the Mr. Potato heads. They have several computers which allow you to build a Mr. Potato head on the screen. We literally had to pry Sydney away from the machines. Ironically she enjoyed playing with the Mr. Potato Head far more on the computer than she did with the real thing. Of course, we couldn't leave the Disney store without buying a few necessities but the trip was well worth the adventure.

On another note, I have finally received a response from the Robertson's regarding our issues at school. I first wrote about this incident on May the 2nd for those of you who would like to review the original posting. His response is as follows:

Mark-

Recently this posting was pointed out to me by the vet and my mother-in-law. We (Kory and I) have raised our children to be tolerant of everyone on this planet we call Earth. No matter race, religion, sex, intelligence, or sexual preferences. I read the post and was horrified that Sydney was not tolerant of my cross dressing son. He is only following in the foot steps of other great Americans like J. Edgar Hoover and Marv Albert. We respect our child's decision to put on a dress and . . . become . . . a princess . . . Wait, hold on. Who am I kidding. She was absolutely right to be mad and horrified that her future brother-in-law was dressed in drag. I have to go now. I need to email Dr. Phil and find out what to do next to handle this situation. Oprah says he has all the answers.

Love always, Chance ( father of the cross dressing 2 year old )

Isn't life grand.

Well, as I said, it was a nice rather uneventful weekend and now it is time to get back into the game. Let's hope for a non-memorable non-eventful week of purpose.

4:05 AM 5/10/2005

Another treatment down. Sydney had a pretty good treatment day. It was strange (I know - shocking) but she did not experience pain until after the treatment had completed. We have found that distraction appears to do wonderful things to help with the pain control. During the second half hour of our infusion we were blessed with the presence of some clowns. The clowns kept Sydney occupied and happy. As they sang songs, told jokes, and mesmerized her with magical whimsy she kept intently focused on them. The next thing we knew the infusion was over.

After they left she fell into a funk and was difficult to placate. She had a couple of waves of pain and she was clearly uncomfortable. A half dose of Dilaudid and a chaser of Vistaril was just the thing to help her gain control and fall asleep. About an hour and a half later she would wake up and be ready to venture to the playroom.

The treatment was rather quick for a Monday. As it turns out, her ANC was 21.8 so we got to forego the 2 hour infusion of GM-CSF. All in all, it was a pretty good day.

I am getting more and more anxious to get back home. As Lynley and Snicklefritz's due date draw nearer I find myself feeling the pressure of getting home. Today, Lynley goes back to the OB and I am hopeful that she doesn't have any signs of imminent delivery. You know, we have a schedule to keep and it is not that I don't want to see me new baby girl. I just want to be there. I want the first couple of blurs that cross her eyes to be that of not only her Mommy but her Daddy too.

It is time to get to work so that I can focus on my purpose later today.

4:34 AM 5/11/2005

It was another interesting treatment day. Sydney did not experience any pain until the last fifteen minutes of the infusion. We then treated her with a half dose of Dilaudid. The pain was controlled within about ten minutes although she continued to have sporadic and intermittent episodes of pain throughout the next hour. The Dilaudid, on the other hand, really got a good grip on her. As the pain subsided Cybil appeared and she was - well - pissed off. Now, Cybil is not particularly nice even on a good day so when you have Cybil appear in a bad mood you know you are in for some serious trouble. We did our best not to make eye contact with her but it did not seem to work. It really looks pretty strange if you walk into our room when Cybil is there. You will find DeeDee and I with our heads down. Sometimes we will be tapping on a computer, sometimes you will find us reading a book, and at others you may find us doing nothing at all. But, we are always shielding our eyes from the wrath of Cybil.

I suppose I can make a little fun of this because I know it is the drugs. I know she will get better and I know we will eventually see the return of our sweet dear Sydney but it is hard to tell exactly when that will happen. Because of this we get suckered into Cybil's vortex of meanness. We will just be sitting there in our treatment room, heads down, shielding ourselves from her wrath when we will hear it - "Daddy (pause) Daddy?" It is a sweet sound. Could this be it? Could my daughter have returned? There is a debate going on in my head. I know better than to look up but I always do. "Yes, honey," I say as I slowly raise my head. And then it comes. "Daddy, don't look at me! Stop looking at me! Go away! I don't love you - forever and ever! I told you not to look at me! You made me cry. You are a bad Daddy! I don't love you." She will then fold her arms across her chest, turn around so that her back is facing me, and then huff. After a moment she will turn her head over her shoulder and give me the biggest mean look that she can possibly conjure.

At first this always hits me with a bit of shock but it quickly turns to a kind of internal laughter as I realize that I have been fooled by Cybil once again. This routine will sometimes play itself out several times during the hours following treatment - until the one time I here those words "Daddy (pause) Daddy?" I look up to realize I have my baby girl back and she says "Daddy, I love you - the whole world."

I guess good things come to those who wait.

A purpose can be a deceiving but rewarding little thing.

4:11 AM 5/12/2004

What seemed like a pretty good day may not have been so good after all. The day started out routinely enough. We went to the hospital. We snuggled into our room for a full day of activity. We ate our breakfast. We played in the playroom. We had our noodles hooked up. We started and finished our 2 hour GM-CSF infusion. We sat and watched a movie during our 1 hour wait period. We received all of our premeds. We started our 3F8 infusion. Sydney had pain a little past the half way mark. It took a while to get it treated with a half dose of Dilaudid but once we did she rested somewhat comfortably for the remainder of the afternoon. At about 2 PM we unhooked her noodles and headed back to the playroom. Sydney talked and played with the child life staff and even made a venture back to the doctor's offices to steal some lollipops and say hi to Dr. Kushner and the Neuroblastoma team who were just finishing up a meeting. At about 3 PM we left to head back to the Ronald.

The almost perfect treatment day you might say.

But then we got home.

Almost immediately after we arrived Sydney started complaining of nausea. I gave her some Vistaril to calm her stomach and although she never threw up she continued to huddle herself over the waste basket whenever she felt the need. She did make a short jaunt down to the playroom but most of the evening was spent snuggled in my arms. She clearly did not feel well. At about 7:00 after refusing to eat anything (including chicken noodle soup - her favorite) she drifted off to sleep.

She has rested comfortably all night.

Given all that she has been through and all that she continues to endure I can certainly understand her not feeling well. But, it is different, it is out of our routine and it is somewhat scary especially in light of our upcoming scans. I still find myself split with two distinct personalities. Even after all that we have been through. Rationally, I know that Sydney did not have a bowel movement yesterday. I also know that she sometimes complains of nausea when she is in fact "plugged up." I know that Dilaudid can cause some issues with constipation. I remember last week that we had a somewhat similar issue. But for some reason today it is scary and it bothers me. My irrational side is thinking of all of the bad things it could be. I need some reassurance. I need these scans and I need them to come back clean.

I also need to get home to my wife who is getting ever closer to delivering.

The temperature is rising and I am fighting to stay cool.

Sometimes a purpose can be a scary thing.

4:50 AM 5/13/2005

Yikes! I over slept. I am excited to say, however, that this is our last treatment day for this round. Tomorrow we have an MIBG scan and then on Monday we have our CT and bone marrow aspirates. Monday evening we leave for home. It is coming down to the wire. Talking to Lynley last night I realized how fine of a wire it is. She said she felt "weird." We are all hoping that she just pushed herself a little too hard yesterday and that a Snicklefritz delivery is not imminent. Hold on honey. Just a few more days. We are coming home.

We have a purpii.

4:15 AM 5/16/2005

Well, well, well. Here we are on our final day in New York. I am happy to say that Snicklefritz is still in a holding pattern and Lynley is doing her best to keep her in until we get home. Today we have a CT scan and a bone marrow aspirate and then we will be on a plane for home, sweet home.

Sydney had a pretty good weekend. Friday's treatment was pretty typical although we ended up spending much of our afternoon in the company of Cybil. We finished up treatment at a little after one at which point she continued to doze until about 2:30PM. At a little before 3:00 PM we headed down to nuclear med for her MIBG injection. Unfortunately, the waiting room was full and we were forced to wait. On any other day this would have been fine but on that day I was with Cybil. I tried to keep her occupied by coloring but she was really just in the mood to watch me color and to dictate the color of ladybug that I would draw next. This was all fine and good until someone tried to talk to me. Cybil would have none of that. She was very clear that my job was to color lady bugs and not to talk to anyone - "never ever." Cybil must have thought me rude because whenever I opened my mouth she would sternly correct me. It was somewhat embarrassing but at least I knew that it was the drugs. Once Cybil said it was okay we went back to the treatment area and we received our 1 minute MIBG injection.

On Saturday, Sydney attempted her first MIBG scan sans sedation. This was quite an incredible accomplishment for someone who is just getting ready to turn four years old. The scan requires that Sydney lay still for about an hour while two large scanning plates travel from head to toe and then circle her body. Unfortunately the scan was at 9:00 AM so Sydney was not the least bit tired. She did, however, make it through the scan. There were times near the end of the scan where I was sure she was going to implode but she held true to her mission and we ended up completing the scan with out incident.

I spent most of the entire hour telling her a story. I made up some truly nonsensical story about Princess Sydney, Prince Truman, and the magical bunny. My story lasted nearly an hour and although it seemed to please Sydney I am quite sure that it gave the radiologists a good laugh. If you haven't tried coming up with an hour long story in your head, on demand, and off the cuff, beware, there is a significant risk of embarrassing yourself.

The scan itself scared me. I will be the first to tell you that I can not read a MIBG scan, even after all of the ones that we have seen. To me, they always look like there is disease ravaging her little body. This scan was no different and I am anxious to get the results. The last two nights have been fairly sleepless for me. They ought to have an interpreter during these scans because, for better or worse, the parents get to see the screen and images and without the information to process the results it certainly adds to the stress. Now, I have been wrong about scans before. In fact, the last time we had this scan I was sure that there was disease. Fortunately, it turned out to be nothing. However, it doesn't make the waiting any easier this time. I will continue to bite my nails.

Well, I had better be off. There is a mountain to do today. I am hoping we get the results from our scan and I pray that they continue to be clean. I would really like to exhale before we get home.

Honey, we can't wait to get there. We will see you tonight.

I have a big purpose today.

5:27 AM 5/17/2005

We are home safely. I can not tell you how happy we are to be home. This was perhaps the toughest trip on our family and we are thankful to be together. I have never missed my wife and my little Dudely so much.

I will catch up with everyone tomorrow but this morning I am going to spend time with my family.

P.S. We received the results from the MIBG scan and I am extremely relieved to say that it is negative. We still have two other results to go but for the time being we are all clear.

I finally feel that I back with my purpii.

5:25 AM 5/18/2005

As good as it is to be home last night was not a good night. The first doses of Accutane have, once again, hit Sydney extremely hard. From about 8:00 PM until well past midnight Sydney was throwing up. In fact, I can hear her upstairs now. I will be back.

I have them in concert this morning. I will have to update some other time.

Don't worry, I have a purpose.

5:20 AM 5/19/2005

I am still keeping my fingers crossed but I think Sydney may be regaining control. Sydney woke up early yesterday morning with a full appetite. We made her breakfast in bed at about 5:30 AM. She ate fairly well. The problem was that, as tired as she was, she would not go back to bed. Later in the morning she would sleep for several hours. By the time afternoon was here she appeared to be fully recovered and played the afternoon away with my little Dudely and I.

After this episode I wrote to one of the nurse practitioners at Sloan to get her impression on Sydney's side effects. We were pretty sure that this incident would not indicate any kind of dose reduction but we wanted to make them aware. Outside of what we already knew about curbing Accutane side effects there was little more that could be done. One of the biggest ways to curb the stomach upset is swallowing Accutane with fatty foods. Although we had tried it the night before, Sydney did not eat particularly well. I am thinking that this was probably the cause. So, as a rule, we are making sure that she eats well and eats a substantial amount of fat content (usually in the form of ice cream or the like) and we are premedicating her with Vistaril about 15 to 30 minutes prior to her taking her pills.

I am happy to say that this seems to be working. Sydney took her pills at about 6:00PM last night and we did not glimpse even the slightest bit of nausea.

On another note, I am happy to say that we are back as a family. We are still only a family of four but I have a feeling we will be five by early next week. I always miss he rest of my family when we are away but it was really different this time. It was an intense feeling in my gut and I have never been more thankful to be back in my wife's arms. I think part of missing them so much was due to Lynley's oblong state but I think even more of it can be attributed to our anniversary dinner before we left. I always love my wife and we are always there for each other but there was something about that dinner we had that really brought us closer together on an entirely different plane. It is hard to explain. We have been going through the motions for so long we just expected the other one to be there (and we always were) We have done everything together and have appreciated each other. I think the difference was that on that night we stood back and looked at all that we have been through and we finally had the moment to appreciate how lucky we were to have one another. I think we both came to the realization that we could not have done it without the other. We realized on some emotional level how lucky we were to have one another and all of a sudden that emotion, that love, that tingling sensation finally came to the surface and we had a moment to appreciate each other. We have spent so long "doing" for each other and for our family but never took a moment to appreciate it. This realization has added an entirely new dynamic to our marriage and it was this that made it so difficult to be away from the ones I loved. I don't know if any one ever believes me when I say it but I truly am a lucky man.

That is because I have purpii.

5:08 AM 5/20/2005

The end of the week is here and it could not have come any sooner. It feels like we have been running full throttle for quite some time. With Sydney's scan happening over last weekend and the fact that we did not get home until late Monday night we never really got the chance to take a breath before we were thrown back into the fire. Speaking of scans, we still have not heard anything regarding the CT or the bone marrows. I must admit I am starting to get more nervous than usual. I know Dr. Kushner says the longer we wait the better the odds are of good results but that is not happening right now. We usually get results on Wednesday or Thursday and this has me biting my nails a bit. I will call later this morning if we still haven't received any word.

On another note, Lynley is entering the "funky" stage of her pregnancy. I personally do not know what that is but I am pretty sure it means that we are getting close. The clear sign that we are in the "funky" stage is the fact that Lynley keeps telling me so. She says she has not felt any contractions but is feeling the appropriate twinges of pain. My guess is that this is somewhat like the beep on the microwave when you are defrosting something. Snicklefritz has finished cooking but now we have to let it stand in the microwave for a little while. Yes, we are getting close.

On another, another good note, I am pleased to report that Sydney has tolerated Accutane pretty well in the last few days. She has had no bouts of nausea or pain. I can also tell you that she is ecstatic to be home with her Mommy and Baby Brother. I think we are on our road to recovery.

Yesterday we visited Cook's for an audiology appointment. I am happy to report that Sydney's hearing has shown no signs of further deteriorate. Both Lynley and I have been a little concerned about her speech development and though that her hearing may have been the culprit. We honestly do not know if Sydney is having any speech development issues. It is not like we have another almost 4 year old handy to compare her to. We just have our best guess so I imagine that we will be setting up another meeting with a speech pathologist to have her checked out.

We also took the opportunity to stop by the familiar halls of 3 North to see all of our friends. Sydney got the opportunity to play with Miss Katie and Graham, Lynley, and I got to catch up with many of our favorite nurses. It really is amazing how close we came to those wonderful people. They have become fixtures in out lives and although it has been months since we have been treated there it feels like we are at home. They really have become part of our family. They are a part of us.

Well, I have to run. There is work to be done and nails to bite. I will update when we get some results. We all have a purpose today.

10:46 AM 5/20/2005

Scan results in

NO EVIDENCE OF DISEASE

Could you hear me exhale?

5:00 AM 5/23/2005

Is still really feels good to say "NO EVIDENCE OF DISEASE." There is nothing quite like it in the world. I must say we had a great weekend. We did not celebrate intentionally but I think it was just in the air. Sydney, Lynley and Graham spent much of their weekend in the pool while my sweet wife worked me like a dog. Lyn has this nesting thing going on and it resembles corporal husband punishment. Can you believe this? On my first weekend back she made me continue working on finishing up the guest house and then she had me trim the trees around the house. Now you may be saying "Oh, come on Mark, she is just getting ready for the baby and wants everything to be nice." but what your not understanding is that it was 97 million degrees yesterday and my abusive wife made me cut down so many branches that you cannot see my house from the street due to the bundled branches that await the garbage men. I am serious. We must have close to 25 cubic yards of branches and debree lining the street. So, I offer you this, if you see my wife in the halls at work or if you pass by her in the grocery store, RUN, don't walk. You could be next and she is not above putting anyone to work. Apparently, she has a purpose too.

On another note, it sure is good to be home. I can laugh, I can cry, I can be worked like a dog - but my family is together. Here is to purpose.

5:41 AM 5/24/2005

I am having a bit of a late start this morning. I really slept pretty well which was nice given the fact that I am still sore from chopping down the forest. I tell you, even though I am trying really hard, I am not getting any sympathy what so ever from my nine month pregnant wife. It isn't that she lost her sense of humor with her pregnancy but apparently she thinks I lost mine. Anyway, it is still fun to complain about.

Sydney went back to school yesterday. It was great to get her back to some normalcy. With all of the nausea she encountered last week we did not think it was appropriate to stick her back in school right away. But, with the accutane flowing a little more smoothly this week she was ripe for some age appropriate interaction. All in all, she had a great day at school, however, she elected to skip her nap which made her a bundle of joy later in the evening. There is something about approaching the age of four where these little kiddos begin to transform into little adults - or at least they think so - and Sydney is certainly no exception. Over the past few weeks we have really started to see some changes. She is starting to assert her independence and she makes bold moves at trying to dictate her future. To Lynley and I the difference appears as clear as day. We are doing our best to give her freedoms to make choices but there is just something about this age that makes them never enough. It usually turns into a battle of wills.

A perfect example occurred this weekend. Sydney said that she wanted to swim. Although it was getting late in the afternoon and closer to dinner we obliged. It is one of her favorite things to do and it also just happens to be a great family activity. So, we all plopped in our bathing suits and headed to the back yard. We were all in the pool when we decided that we needed to get out to get dinner ready. Well, Lynley and I decided and Graham, well, he is just happy to be wherever we are. Sydney, however, said "No!" and elected to swim out into the middle of the pool. We tried explaining the situation to her more clearly as in: "Sydney, we came out to swim in the pool because you wanted to and we explained that we could only swim a little bit because we had to eat dinner. You said okay to that. So now it is time to get out of the pool." She responded "No, I don't want to." Lynley said "Sydney, we are going to get out of the pool and go eat dinner." Sydney quipped "No, I am not hungry!" and then folder her arms across her chest (she has a floaty bathing suit) and turned her back to us. We then started with the punishments. "Sydney, we need to get out of the pool right now. Please come get out of the pool!" "No!" she retorted. "Sydney, if you don't come out of the pool you will not get to swim tomorrow." "That's fine, I will swim another day!" "Sydney, if you don't get out of the pool you will go straight to bed." "That's fine, I am tired" she shot back. "Sydney, we will take yellow blanky away." "No, I will not get out of the pool - never, ever." she demanded. At this point we were left no option but to go physically remove her from the pool before we started making punishment promises that we could not actually implement like hanging her from her toes by the ceiling fan or sticking her in a box a mailing her away until she decided to listen to her parents again. Once we got her out of the pool nothing really changed. She was acceptant of her punishments for not listening and although she was not particularly nice there were no screaming fits, etc. In the end we fed her dinner and put her to bed but we were amazed at her newly found obstinance. Isn't parenting great. We don't know the answers but I am sure we will find them. As a side note, Lynley said that this was my fault for getting her pregnant and bringing her into the world. Like I said, pregnant people have a short tolerance for humor.

On the other side of the coin we have Graham. Graham has decided that I am Mama which is really strange given the fact that he had always called me Dada. But, for some reason, ever since we got back from New York he has followed me around calling me Mama and will have nothing to do with anyone else. Mama Lynley is okay but Mama Mark seems to be where it is at. This is actually pretty funny because Sydney has preferred Mommy ever since we got back. I think our children have gotten board with the parent they had to spend time with while we were away and decided to switch when we got back. Anyway, Dudely, the cling on, can not be in the same room with me without being held by me or attached to my side. He follows me everywhere chanting "Mama, Mama." Honestly, I think the issue is that both Lynley and I missed our other child so much that we showered them with affection when we got back, more so than with the child that we just spent the last two weeks with. Thus, creating a new dynamic in the household. Both kiddos still like the other parent but their is clearly a preference to the other parent right now.

So, that's what Lynley has. A husband that, looking for sympathy, complains constantly about how sore he is from chopping down the trees. A daughter that has decided it is time to assert her independence and make her own choices and therefore opts not to listen. And finally, a son who has dropped her for Daddy whom he now calls Mama. Oh yeah, and don't forget, she is nine months pregnant.

And people think I have the purpose. Calgon, take her away.

5:32 AM 5/26/2005

No, not yet! Late Tuesday night we headed to the hospital. Lynley was having contractions about every 3 to 5 minutes. By he time we were settled in one of the rooms and hooked up to the monitors she was having contractions every 2 minutes and they appeared to be the real deal on the monitors. Everyone was preparing for what we thought was the inevitable. Then, as if without warning, they spaced themselves further apart and the intensity decreased on the monitors. We were sent home at about 2:00 AM. Lynley and I were both exhausted.

Yesterday was a typical day. We both woke up at about 6:30 and followed our normal routines. By afternoon we were both complete zombies. At about 6:00 PM we decided to speed up bed time by about an hour. Right before we headed upstairs Sydney decided to run up to the living room window to say hi to her mother. Her hand went right through one of the panes of glass. It took about an hour to completely stop the bleeding but the injuries were pretty minur considering what happened. She has several cuts on her right hand but we feel incredibly lucky it was not more. After bandaging her up and applying the appropriate amount of kisses we finally made it to bed.

I am so tired I can't see straight. I think I have reach the point where I am too tired to sleep. This is going to be another long, long day.

But, I still have a purpose.

8:19 AM 5/27/2005

At 2:56 AM Sydney became a big sister once over to 7 pound 3 ounce, 18.5 inch Ainsley Eames Dungan. Both Mom and baby are doing well although none of us have slept, so I am off to take a nap. I have a feeling I will need my rest. I now have another purpii.

4:52 AM5/28/2005

It feels like I have been away forever. I am happy to report that everyone seems to be doing well. Mommy and Ainsley got to come home a day early on Saturday and we have been spending the majority of the last few days in the comfort of our home. Ainsley seems to have fit right in but I can tell you, 3 kids is definitely more than 2 kids. Lynley has adjusted well but I am still making the transition to having another child. I still get a little nervous when I am left to fend for myself amongst the little heathens. They can sense weakness. Sydney has become a tremendous big sister and tends to her constantly - almost too constantly. She loves to be a part of just about every thing we do for the baby from changing her diaper to feeding her and she always seems ready to hold "her" baby. In fact, on several occasions I have been told that I could not hold "her" baby. Graham, on the other hand, is not too impressed. He has noticed little Miss Ainsley Eames on occasion but is far more likely to just pass her by on the way to whatever he was doing. He seems to think that she is on some type of loan and will be out of his hair in no time.

What else can I tell you about Miss Ainsley? Let's see. Well she came into our world rather easily. Of course, I can say that, after all, I am a man. Last Thursday after a clinic visit and shipping off Sydney's blood to MSKCC we had a late afternoon appointment with Dr. Quist, Lynley's OBGYN. At that point Lynley was at about 4 centimeters. Dr. Quist thought it was highly unlikely that we would make it through the night and suggested that we go home, eat a light meal, go for a short walk, put the kids to bed ,and see where we stood. At about 7:30 PM, Lynley's contractions were definitely stronger so we called the doctor. Everybody seemed rather concerned that once Lynley got going she was going to give birth fast so it was decided that we should head on in to the hospital. With Lynley being strep B positive it was important that we got antibiotics into her and the baby before delivery. DeeDee was nice enough to be our "on call" and within minutes she was over at the house to watch over our sleeping kiddos.

At the hospital things moved slowly and it was about 9:30 PM before they started the first dose of antibiotic. The trick with the antibiotic is to get two doses in. Unfortunately, the doses were roughly 4 hour apart and they took about an hour to get to the baby. So, in the best case scenario, we knew then that we were in for a late night. The doses could have been given to Ainsley after delivery but it is apparently much better to give them through the Mommy. We were basically in a holding pattern and where content to wait it out - if we could. At about 10:30 the pain was starting to get rather intense for Lynley. Already having experienced the miracle of child birth twice over she saw know reason to forgo the epidural so without further ado the anesthesiologists were gathered and with about thirty minutes she was out of pain. There was some drama after the placement of the epidural. Ainsley apparently did not care for her being in the upright position for so long and decided to teach us a lesson by dropping her sats and her heart rate. After much finagling they finally got both mother and child into a comfortable position and everything returned to normal. Then we waited.

Aside from the itchiness from the Fentanyl Lynley was pretty comfortable. She said she had a whole new understanding of the itchiness and irritability that Sydney experienced with Fentanyl. From an outsiders point of view it seemed very similar. She was blotchedy, scratchedy, and edgy. For the next few hours we just waited. There was not a lot to be done. We had no interest in speeding up the process and everything seemed to be going well. I think I even got the opportunity to grab a 30 minute cat nap at some point. At about 1:30 AM they started the second IV antibiotic and we knew things were getting closer. We were starting to see activity. Lynley was now nine centimeters and the monitors were showing some pretty intense contractions. Lynley seemed obliviously itchy to them. At about 2:00 Dr. Quist came in and broke Lynley's water. There was then a flurry of activity as her bed was transformed into a birthing table and all the necessary carts and personnel were brought into the room. We even had some personnel from the Neonatal Intensive Care Unit on hand just in case. The time was coming.

To be continued...

Hey, I can't sit here and write all day I have multiple purpii to attend to.

6:15 AM 6/1/2005

A quick update before I try to finish the story. Our power went out last night in high winds and we spent some time keeping the kiddos complacent. About an hour later Sydney woke up complaining of pain in her right knee. We gave her a dose of Tylenol which seemed to do the trick but it is still hard for Lynley and I to overcome the sense of terror we feel when she complains of leg pain. I am somewhat comforted by the fact that she just had scans two weeks ago but it is still in the back of my mind. I know how aggressive this monster can be and my least fond memory from both diagnosis and her questionable relapse is waking in the middle of the night with leg pain. I am racking my brain to think of anything she might have done at school yesterday or anything that she did last night that might be the culprit but so far I am coming up blank. I can tell you that she is extremely active. She ran around like a wild woman at school and at home yesterday and she certainly could have injured it. Secondly, she just finished this round of Accutane on Monday and, when memory serves me correctly, I remember some sporadic leg pain after a few of our rounds of treatment. So, in short, she had some leg pain (in a new spot) and although we are nervous, we will watch it extremely closely.

Well, due to my tardiness this morning I have to run. Ainsley is rooting around for a gullet full and Graham is chattering at his crib upstairs. One more and I will have a full bag of nuts.

I am a little shaky this morning but my purpose seems as clear as day.

5:17 AM 6/2/2005

Now, where was I? Yes, the Snicklefritz delivery. As I left off we were really getting down to the wire. Lynley was itchy, the doctor was hovered over home plate, nurses were positioned all over the room and I, of course, was right where I needed to be, ready to do all of the ever critical Dad stuff. Once assembled Dr. Quist asked Lynley to give a push. Just as soon as she said it she took it back and all of a sudden everyone was telling her to stop. There was a moment of terror as I wondered why they were stopping the process. It soon dissipated as I saw the doctors and nurses scrambling to get the floor covered. It was coming now. Sure enough, with one and a half more pushes, little Ainsley was here. It was that fast. That just goes to show how well I did at coaching Lynley. I must have really done a good job. Now Lynley will want to take credit for it but every man knows it is superior coaching that really makes the difference.

Now, in typical Dungan child fashion, when she came out she looked like some form of alien lizard. Luckily, having been through this before, we knew that she was actually, in fact, a baby girl and not a lizard. I think some people find newborns to be beautiful. We, on the other hand, cannot say that we feel the same way. The first few days in a Dungan child's life are critical to make the change from lizard to cute baby and she was no exception. Regardless, we were ecstatic and relieved that she was here. There was a flurry of activity as everyone checked her out. Ten fingers, ten toes, two arms, two legs and an adorable little lizard face. Yep, we had a seemingly healthy, screaming baby girl.

I snapped pictures as they finished checking her out and tended to Lynley. Within about 30 minutes the room was once again quiet as Lynley, Ainsley and I got spend our first quiet minutes together. It was a beautiful time.

Later in the morning we would change rooms and Ainsley would get the rest of her newborn tests. We had some moments of quandary as some of the tests came back questionably. She failed her hearing test in her left ear. We would find out later in the day that it was just gook in her ear and the next morning she passed another hearing test with flying colors. Ainsley also had an EKG which showed that one of the "valves" (I think that was the term) had not closed up. Apparently this diverter valve is the one that switches the oxygenation of the blood from Mommy to Ainsley's own lungs. At first it may seem like a scary result but there really isn't enough data to know when this is actually supposed to close up. They don't do enough EKG's on one day olds to know that, for instance, 80% of kids have it close within a certain time period. Basically, we were told to wait it out and have her checked in a year. They certainly did not seem too terribly concerned.

So, there you have it, the delivery of Miss Ainsley Eames Dungan. She is happy, healthy and home. It is still sinking in that we are the parents of 3 kids under the age of four but I think we are adjusting pretty well. So far, they haven't taken over.

It is always fun to get a new purpose.

3:54 PM 6/5/2005

I am starting to realize that it will be quite sometime before I, once again, get to appreciate the sanctity of my quiet mornings. So, I am going to just try and write whenever I can get the chance and, right now, I have the chance. Since Ainsley blessed us with her presence our life has been a blur. It has been nothing but fast action, fast forward nonsense and it is seemingly affecting our family. It isn't that things are bad but there are definitely some challenges in our lives right now. It is funny, when we had three kids everyone said congratulations but what they must have been saying under their breath is - you idiots. Who in their right mind would choose to have three children under the age of four at the same time? Well, I will tell you, NO ONE, because if you were in your right mind you certainly would not been that way for long. So, how did we get to where we are today?

Don't get me wrong. I am happy and I am not complaining. For once, this has nothing to do with cancer. It is just life. It is parenting. And, in times of high stress and lack of sleep, trying to stay smarter than your kids. Which, by the way, is somewhat questionable at this point in time. I am happy to say that Ainsley is fine. She has matured from a lizard into a beautiful baby girl. She is somewhat low maintenance. She is definitely not as easy as Graham was at this age but, so far, she is edging out Sydney by a mile. There is no doubt that Sydney was the most difficult of all at this age. Maybe it is experience but it sure seems to be easier than it once was. Our only problem with Ainsley is her sheer dedication to stay up chattering until the wee hours of the morning. It doesn't seem to be food. It doesn't seem to be dirty diapers. It doesn't seem to be gas. It doesn't seem to be Colic. In fact, it rarely even makes her cry. But, you can bet your bottom dollar that come midnight she will be talking about something. She will just lie in her crib and chatter. It is constant and unending. It doesn't seem to matter whether we keep her up in the afternoons and evenings or whether we let her sleep them through. She is dedicated to partying late at night.

Now, Graham. Well Graham is the Dudely. He is just happy to be here. He continues to be relatively indifferent to Ainsley outside of a couple well placed kisses throughout the day. We have not seen any behavioral changes and he is just plain glad to be a part of the family. It isn't to say that he does not have his moments. He can put on quite the little tantrum when his minimum needs are not met. He is not looking for extras in life. He needs three squares, some cuddling, and the right to carry crayons around the house in his little hands. If he has that, he is a happy boy. Unfortunately, he has the habit of using the crayons so that is one of our current battles. Hey, it could be a lot worse so I am not too concerned about the little Dudely.

Sydney, on the other hand. Well, Sydney.... Sydney is having some issues. She loves her little sister dearly but it is obvious that the changes that she brought to our lives have hit her the hardest. I could talk for days and days on this subject and I probably will. This has been one of the tougher mental hurdles to help her through. The good news is that she has won many battles in her life and this one is, no doubt, just another hurdle that she will overcome.

Unfortunately, my time here today has come and gone but I hope that I have time to get back to this sometime soon. Tomorrow Sydney will be 4 years old, and for us it is a huge milestone. We are so tremendously thankful that we have been given the gift of having here. We will begin her birthday with a morning trip to the Oncologist for a routine check up and to see if we can get the doctor's thoughts on her sporadic leg pain. Yep, over the past few days we have seen the recurrence of another midnight episode of pain. We still feel confident that it is the Accutane but the fear is always in the back of our minds. She will follow this visit with a trip to school where they will be celebrating her birthday and, most importantly to her, it is a water day which means she will get to splash around in the pool. Following school we will celebrate in the evening but the real partying will wait until next weekend.

I love my purpii - ups and downs and all.

5:52 AM 6/7/2004

What a splendiferous birthday! I know the definition of most childhood birthdays does not include a trip to the oncology clinic for a lab draw but this one did. I can also tell you that, without a doubt, this was probably one of the best days in her life. It was a jam-packed day. We started it with an 8:00 AM visit to the clinic - Dungan 5 in tow. It was quite the little adventure. I am pleased to say that, for the most part, everyone was well behaved. Little Ainsley even got the pleasure of meeting her namesake, Dr. Eames, who was on hand to give Sydney the once over. It was great to catch up. There is something so reassuring about talking with Dr. Eames. As is usual, I questioned her pretty good about Sydney's leg pain and she seemed relatively unconcerned. She, like we, felt that it could be attributed to the Accutane. As anticipated it was decided to just watch it and see if we saw any other flair ups. Other than that, Sydney was fit as a fiddle. We also discussed Sydney's current trial at Sloan and what her future holds. We are incredibly thankful for her progress and her response to treatment but there is still some question as to what her next two years of life will be like and it is highly dependent on when she develops a HAMA. For now we will continue to go back to Sloan every two months. After our obligatory goodbyes we were off in a race to Sydney's school. Although Splash Day was postponed, Sydney settled into her usual routine after a little coaxing. She was really looking forward to Splash Day and was disappointed and clingy when she discovered it would not occur. After some birthday cupcakes with her classmates she calmed down and I left to race to work.

I only worked a short period of time yesterday. There was a ton to do before Sydney was finished at school. We had presents to wrap and many of her toys that we needed to get ready. Her big present from Mommy, Daddy and the Grandparents was a bouncy house. This was her favorite thing from her last birthday party and we opted to purchase one this year. Given the price of the rental I think we will have our money back within about two days.

After school we invited Truman and Preston over for an impromptu mini party for swimming, pizza, and bouncing. All of the kids had an incredible time and although there was some unnecessary kissing and hugging I was touched to see her so happy. It was the first day since Ainsley was born that Sydney spent less time in time out than she did actually playing. She was happy and agreeable and I was just ecstatic to have my baby girl back.

It is obvious isn't it. There is some jealousy running amuck in our house. Coupled with the second dose of Accutane you get quite the disagreeable child. Lynley and I have been struggling to get the balance just right but Sydney is still competing for our time by acting out. Yesterday, the focus was on her. She had almost the complete focus of her family on her. She didn't have the need to act out and she didn't. It is somewhat unfair for her. Being the oldest we expect more from her. Ainsley is a newborn and requires frequent attention. Graham is fifteen months and requires constant supervision. So where does that leave Sydney? Well, it leaves her craving one on one attention and acting out to get it. As I said, Lynley and I are struggling to find the balance. We try to spend at least thirty minutes of one on one time with each child everyday but right now, although it is better, does not seem to be getting the job done. I know we will figure it out but yesterday was an incredible help in making us realize what the issues are. It can be hard to see the trees for the forest. It let us see that our sweet baby girl was still in there and we just had to find a way to get her out again.

You have to find the right balance of purpose.

5:16 AM 5/8/2005

The grandparents arrived yesterday afternoon. Almost as soon as they arrived Papa was out in the pool playing with Sydney and I. I think having them around the house will really help us work through some issues with Sydney. As I mentioned yesterday it is entirely about balance. To really get a good picture of what was going on I had to really reflect upon the last month of Sydney's life. As soon as Sydney, DeeDee, and I got back from New York we started to see some changes. I discussed it then but our children started to choose sides. Graham decided to be a Daddy's boy and Sydney decided to be a Mommy's girl. This is in direct opposition of how things have been since Graham was born. Sydney has always been Daddy's girl and Graham has always been Mommy's boy. It was not that we chose this path it just seemed that the kids favored a particular parent. Both kids loved both of us but one of us was always the "go to guy" in moments of stress. So, to make a long story short it was really somewhat strange to see the kiddos flip flop on us when we got back from New York. Sydney would have almost nothing to do with me and Graham would have almost nothing to do with his Mommy. I assumed at the time that they just missed spending time with the other parent but it could also do with the fact that since Lynley and I were apart we both had to play double duty parent. We had to be both the good guy and the bad guy. We had to be the cuddle parent and disciplinarian.

Several weeks passed while we were at home. Sydney and Graham maintained their opposite preferences no matter what we did. Sydney would not listen to me. If I asked her to do something she would always go and ask her mother if she had to do it and Graham became nicknamed the "cling on" because no matter where I was he was firmly attached to my side and usually yearning to be held. As the days passed Sydney listened to me less and less. Lynley was very supportive and did not do anything to encourage this behavior. We tried several different things to curb the behaviors but Sydney, for some reason, was mad at Daddy.

When Ainsley was born our focus moved from working on these issues to just keeping our heads above water. Our usual routine had been thrown out the door and the first week was all about the struggle to find balance. I don't know that we neglected Sydney but life certainly was not like it was before. Ainsley consumed a lot of her Mother's time which left Sydney and Graham in my hands. I would play with them both but I must admit the majority of my focus was probably on Graham because he simply would not leave my side. Additionally, he is at that stage where he climbs on everything and is fearful of nothing. Dudely requires a constant eye or he will undoubtedly put himself in grave danger. If fifteen seconds he is likely to have climbed the stairs and shinnied up the baluster at the top to see what it would be like to fly. He is a nut case - a truly adorable, lovable, fearless nutcase.

In the beginning, with Ainsley only allowing about a half hour between her meals by the time she finished eating, had some awake time, got her diaper changed, had her nose sucked out, etc. etc. we had little time to accomplish life. We still had to bath ourselves and the kids. We still had to make meals. We still had to do chores around the house. We still had to do all of those little nit picky things that make up day to day life. Where was the one on one time with the kids? Where was Sydney time? Where was a moment alone for us parental units?

As I go back, I can certainly see the problem.

Multiple Purpii Syndrome.

5:44 AM 6/10/2005

I am officially taking the day off. Yesterday was a big deadline and I made it through relatively unscathed. I thought this would be the perfect opportunity to spend a day with the family and catch up on some ever important honey dos. Lynley hasn't typically experienced post partum depression. Instead she experiences another lesser known side effect - Post Partum List Making. This is the process of punishing your husband for the last 9 months of pregnancy that she endured by listing everything that she thinks needs to be done in the world and then assigning those tasks to me. The thing she doesn't know is that it will take me roughly nine months to get through her list - all is fair in love and war.

On the kiddo front very little has changed. Ainsley still sleeps and eats. Graham still climbs. Sydney remains in her funk. We have tried many things to try and snap Sydney out of it but it only seems to work temporarily. Whenever she is the focus of either Lynley or my attention she reverts back into the sweet, adorable, lovable little princess we all know and love. But, the moment that attention wanes, she is back to being a behavioral nightmare. It is as clear as day. It is almost as if a switch has gone off in her head. We can be outside in the back yard swimming, just her and I, having a great time. She follows directions. She listens. She is cheerful adn kind. The moment Lynley brings out Graham to join us she changes. She goes from being sweet and attentive and morphs into an obstinate little twerp. She intentionally begins to swim into areas of the pool that she knows she is not supposed to. She splashes her brother and not in a very nice way. She runs around the pool - a strict no-no that she is well aware of. Finally, she refuses to listen and her answer is always a resounding "NO!".

As a test yesterday we decided to give Graham only about five minutes in the pool with us. Everyone was watching and like clockwork when Graham joined us in the pool her behavior took a 180 degree turn for the worse. After a few minutes we took Graham out of the pool and Lynley took him back up to the porch. That moment Sydney turned back into herself almost immediately. Moments before I had asked her several questions that were either completely ignored or answered rudely with her trademark "NO!" but now, just seconds later, she was answering me and using "and I love you Daddy" to complete just about every sentence she uttered.

I never thought jealousy (or whatever this is) would be so dramatic and so clear cut. Although we can identify the problem we still have not ironed out the answer. We have been spending significantly more one on one time with her which has dramatically increased her niceness time but she still continues to be a battle when she is not the only focus of our attention. I guess there have been some moments that she has been better behaved even when all of us were together but the difference does not seem to be nearly as clear as the cause. But, we will get there. We will figure it out.

After all, we are parents. It is our job - heck - it's our purpose!!

5:39 AM 6/13/2005

We survived the weekend! This was a huge weekend for us and we made it through. I am so thankful that the work week is finally here so that I can relax. I don't think I have ever worked so incredibly hard. I am happy to say though, my wife's honey do list is nearly complete. Oh, I know she will add more on, but that was the first time I actually made it through the list and even got through a few of the addendums. I even had a few helpers. My son, the Dudely, decked out in his finest Daddy's little helper wear was there by my side. Apparently, he was in charge of bringing me stuff. He brought me screw drivers, sippy cups, and several random things he found on the carpet. The only problem was when he would make a beeline to the bathroom. I had to be sharp. My son has an addiction to toilet water. Once, when I was a tad too slow, he even got a little drink (Yes, I had closed the door but the little toilet water sneak defeated the contraption.) On several occasions Sydney was also my helper. She went with me to the "worker man" store (Lowe's) and she was always ready to tell me when it was time to take a swim break when she thought I had been working to hard. Yes, from 5:30 AM until 8:30 PM this weekend was jam packed.

Sydney had another rough weekend. The switch in her head is still pretty prominent. Lynley and I are struggling to find answers. We are providing consistency and are doing our best to spend ample quality alone time with her. We have hit the books in an effort to try and bring her some peace. If you look at her life it makes complete sense. All through her treatment she was the absolute center of attention as she should have been. When Graham arrived there were still two of us so we were always able to provide the necessary focus on her. But now, we are outnumbered and finding the right mix four our family is a challenge. Both Lynley and I believe that there is a balance. If we had the choice in life we would shower all of our kids with constant one and one attention but we also know that it would not be helpful to them long term. Part of what we do as parents is to give them the tools to deal with the world and we have to help them make the transition from being the center of our family to another kid on the playground. We need to give them the security of being special without the dependence upon it or they will have a large shock as they enter the world ,whether it be at school or at work. Sydney has a tougher mountain to climb because of her circumstance but that does not mean we should carry her up it. We have to guide her and make the journey her own.

From a health standpoint everyone seem to be doing fairly well. Ainsley had her two week checkup. She is now 8 pounds, 2 ounces and 20.5 inches long. In all other respects she is a pillar of health. She is 50th percentile on length and weight and her head circumference exists in the 75 percentile. Graham is doing great. He is a super chunk and if you ask me his body weight is comparable to lead. He is one heavy compact kid. Sydney seems to be doing well. We have had some somewhat scary bouts of sporadic pain but they do not seem to be appearing in the same place and, generally, we have noticed bruising in the area of complaint on the day following. Our best guess is that she is active. I can tell you for one that she was absolutely full blast this weekend. She swam several times per day and when she wasn't swimming she was running or climbing. I might be naive but I truly believe that these aches and pains are just signs of growing and her body adjusting to a far more active lifestyle. Yes, it does still scare me though. I don't know whether that will ever go away.

My purpose sure has been purposeful as of late.

12:16 AM 6/14/2005

Well, it is a little after midnight and I can't seem to sleep. I had an extremely stressful day at work and can't seem to clear my mind. The moment I stop thinking about work I start thinking about Sydney. It is sometimes frustrating being a parent. Right now, thankfully, we are not in the trenches or at the hospital. She is on Accutane but life is pretty normal. I am dealing with parenting issues and at times they seem just as frustrating as the disease. Sydney is acting out. She is better but she is still acing out. I made a bunch of promises throughout this journey and the most important one I made was to make her happy. I want to give her the tools to grow up and be a happy person. Right now, I fear she isn't happy. She is having an internal struggle and I just can't reach her to fix it. On the outside to most people she would seem as happy, loving, and adorable as ever but I can see the difference. Don't get me wrong, she spends much of the day happy. But, there are also many moments of unhappiness. I know it is probably just the angst of being four years old but she has been through so much I just want her to have more. I want her to always feel loved and nurtured in my arms. I want her to feel safe and whole.

It just seems like I spend so much time "dealing" with her acting out and I just can't get to the source to make it go away. I don't want to deal with her acting out. I want to hold her and love her and make her feel safe. I feel like the bad guy and yet I know we are doing the right things. Right now, I just want to be her friend. I just want to be her daddy. Does that make sense? I suppose much of this is my daughter growing up. She is becoming her own person and is fighting for her place in life and her own individuality. I understand but I still just want to hold my baby girl in my arms sometimes.

A purpose doesn't mean you always get what you want.

5:30 AM 6/16/2005

This will be a relatively quick update. I have been under the crunch of a deadline and finally achieved over 4 hours of sleep on a given night. Although my deadline is today I feel much better about it now. The last two days were hectic at home as well. When I arrived at school yesterday afternoon I found Sydney huddled over the toilet throwing up. All in all, I was not too terribly concerned. Although I hate to see her feel so poorly it has become a somewhat consistent occurrence during the first few days of any given round of Accutane. We have been pretty good about premedding her with Vistaril during these first few days but after a full day of activities at school I am sure it had worn off. I rubbed her back as I knelt beside her. She recovered relatively quickly and I carried her out to the car. Once in the car I called Lynley to update her on the situation and almost as soon as I dialed the number Sydney started complaining of belly pain. We decided to call the clinic to see if we could get in for a looksy. We weren't too terribly concerned but she has also developed a rather large lump on her elbow and we thought it would be a good opportunity to kill two birds with one stone. As I talked to the clinic Sydney's pain increased and her screams became audible over the speaker phone in the car. They advised us to go to the ER but I think it was just the dramatics of the situation. When asked about the "owies" Sydney described them as bad poopoo owies - such as from gas. I explained this to the nurse at the oncology office. They suggested we give her some Vistaril and watch her carefully. She said that if it did not get any better that we should still go into the ER, otherwise we should come into the clinic first thing in the morning. After dosing Sydney with Vistaril she slept for about an hour and we never saw another sign of pain or nausea. The lump on her elbow seems somewhat smaller to me now. It is only about a half an inch in diameter. It looks like a very large mosquito bite or spider bite. I am glad we are going in this morning to get it checked out.

Well, on that note, there is my quick update.

I have to get back to work and I only have a short time before I will need to get back to my purpose.

4:55 AM 6/20/2005

Well, let's see. Where was I? The next morning Lynley took Sydney to the clinic to have her checked out. She had apparently made a full recovery the night before because she was back to being herself. The nausea was gone and the lump on her elbow had shrunk twofold. The lump was diagnosed as a bug bite (probably spider) and everything else seemed to be in full working order. On Friday she would go back to school where she had an excellent day. The weekend was relaxing. Well, it was relaxing in the sense that we did not work on the guesthouse, there were no "honey do" lists (Well, any that I paid attention to), and there was no chopping down trees in the back forty. It was not necessarily relaxing in the sense that we are still adjusting to 3 kiddos. Our weekends still seem harder and more stressful than the work week but we are regaining control of the chaos. We are finally starting to establish some sort of family rhythm and I think everyone is becoming more comfortable with the situation. Ainsley is still as cute as a button. She has made the complete transformation from a lizard into a blossoming newborn baby girl. Graham is still a "cling on" and although he is getting a little better he still spends much of the day attached to Lynley or I. Sydney, as well, seems to be doing much better. I think our concentration on quality alone time with each of the kids is really starting to work. We have now moved to phase II of three child juggling and we are slowly helping them to adjust. When we are alone with each child they are perfect little angels. They behave, they are clearly happier, and their personalities are a complete opposite when compared to when they are together. Yes, when we are alone, they are perfect, sweet, thoughtful and even insightful little gems but when Graham and Sydney are together our sweet little brood morphs back into their evil alter egos. Graham becomes "Super Cling On," and there is absolutely know way to detach him from your hip or leg without a continuous whine and probable mental breakdown. He is somewhat like Saran Wrap that sticks to itself. Every time you peel him away from one body part he sticks to another. Sydney also morphs but, for her, it is back into her evil alter ego "Cybil." It is like day and night and almost immediately she becomes argumentative and deceitful. She intentionally does the opposite of what is asked and she continuously pushes buttons and takes everything to the limit. To Lynley and I both of them seem to be fighting for attention and are somewhat like wolves who are trying to establish pack order. I must be honest, although it is stressful we are learning to deal with the situations consistently and although change is slow it is certainly coming. Last week was far better than the week before. It is an adjustment phase and as long as we remain in control as parents we might just win this power struggle. The one thing I have learned is to stay strong. You have to. They smell fear.

Don't ever let your purpii sense weakness.

5:34 AM 10/21/2005

Yesterday was a great day for everybody. Sydney is now on her second week of this round of oral chemo and seems to be taking the side effects in stride. She had one bout of nausea last week but that was the extent of it. Her skin really seems to be holding up well even with all of the chlorine that we have added to the mixture by letting her swim nearly everyday. We keep her lathered up in sun block, vitamin E oil, and Aquafor at all times. Her skin really looks pretty good. It is no longer a pale white and color is returning to her rosy cheeks. She looks like a kid that is enjoying her summer and I could not be happier. The only chink in her armor appears to be some small red bumps that appear to be accumulating on her body. Our best bet is that they are just bug bites that she has acquired from spending so much time outside both here and at school. I would say that she probably has 15 of these little round red spots on her body. They look somewhat like mosquito bites but they could be from ants or just about anything else.

I am hearing very good reports from school. We were concerned there for awhile. She was acting out at school similarly to the ways she had at home and she had become particularly clingy with some of her teachers. On most occasions she was sitting out PE and choosing instead to sit with her teacher. She would tell us that she did not feel very well or that she just didn't feel like it. We tried convincing her to participate but that carried no water in her mind so we then attempted a reward system. When Sydney participates in PE she gets to swim when she gets home in the afternoon. No PE, no swimming. It really is amazing to see how quickly her attitude changed.

At home yesterday she was much better. Oh sure, she had a few moments of acting out but after all she is four. Most of the evening she was an absolute delight to be around.

Well, it is time to run. I have to get back to work. More deadlines are looming and the time is ticking away. But, the good news is that my purpii seem to be adjusting.

5:10 AM 06/22/2005

Sydney continues to do better. It is as if the Accutane this round is made of sugar and spice and everything nice and it seems the more these rounds of Accutane stay the same the more they change. Some months her skin is ravaged by the drug. Other months her skin holds up quite well. Some rounds it definitely puts her in a mental funk and at others it seems to help her rise above it. I wish I understood what the difference was. I have thought back to previous rounds and wondered if the difference was diet or circumstance. I can not find any repeatable relationship that would allow us to develop some sort of consistency. After all of our experience I have simply drawn the conclusion that you are going to have good treatment weeks and bad treatment weeks and I am just thankful that we are going through a good period.

Sydney seems to be coping much better with the changes in her life since the birth on Ainsley. She is now spending more time participating with the family and less and less with the time-out chair. Last night as I tucked her in to bed she gave me a big hug and said "I love you very much Daddy" and then followed it up with "You know Daddy, I like not being in the time out chair so much." I said "I like you not being in the time out chair so much too but it is because you have been such a good girl." She then looked straight into my eyes and said "I think I will be a good girl from now on."

There you have it. Documented proof that a four year old can be trained. It seems a purpose can learn new tricks.

5:38 AM 6/23/2005

Yesterday Sydney stayed home from school to spend some time with Mommy. They went to the park, they played, and as an added treat they went to the toy store to spend some of her birthday money. Later in the afternoon we would take all of the kids to see Dr. Debbie for Graham's checkup. As it turns out, our twerp is doing stupendously. He is now in the 90th percentile of height and his weight is hovering around the 75th percentile. We talked with Dr. Debbie about his weight and his refusal to eat anything green. The good news is that he is doing wonderfully but we just need to find a way to cram some veggies into the boy. Graham also has a few teeth coming in which explains some of the waking up at night, general whininess, and clinginess throughout the day.

While we were there we also had Sydney's ears checked out. The night before last she started to complain of pain in her ear. As it turns out she has a case of swimmer's ear brewing. Dr. Debbie ordered some ear drops and put the kibosh on pool activities until the weekend. She also checked out Sydney's mysterious spots. Last week we had Sydney checked out and all were assumed to be bug bites but now they seem to be blistering. It would make one consider chicken pox but she doesn't really have any other signs. We cultured one of the spots looking for anything fungal but the going assumption is that they are indeed bug bites but that they have the broken blistery appearance due to the Accutane and quite possibly the chlorine in the pool. Other than those two items she too got the seal of approval.

Today Sydney will be going back to school, I will be at work, and Lyn and the rest of the Dungan crew will be hanging out at the house. Here is hoping for a smooth day of purpose.

3:23 AM 6/27/2005

It has been five days since Sydney has been able to swim and I think her ear is finally on the mend. Believe it or not, she has survived although it has been a battle. Swimming has become one of the most important fixtures in Sydney's life and the fact that she can't just hop into the pool is driving her batty. We have tried to keep her entertained in the kiddy pool where she is not allowed to get her head wet but it just isn't the same.

The weekend was pretty good although I worked much of it. I'll tell you. I am tired. I would love one weekend were I was not getting up at 3 or 4 in the morning to try and cram in a bunch of work before my family woke up in the morning. Only to play with them for a few hours until there nap when I would have to get back to working again. Of all of the things in my life I would just like to relax for a little while without work continuing to loom over my head. It is stressful and I just need a break. I just want to have a weekend to truly relax with my kiddos and wife, no pressures and stress from work, just one.

This morning, a huge milestone in a project is due. As has become the norm as of late, I have to race off to work on something that I really don't want to work on in the first place. I would rather be here.

My purpose is more important.

4:25 AM 6/29/2005

Well, unfortunately I am still doing everything but what I want to be doing. Work is impossible. Although I love what I do, right now, I despise going into the office everyday. I can only remember once in life that I was this stressed out and to be honest I would spend everyday of my life in this state of stress than experience the stress related to Sydney's diagnosis and treatment. But, I still just want to get away. I am still spending quite a bit of time with my family even as I work myself to the bone but it never leaves my mind. I just never allow myself to take that relaxing breath. I would much rather be just enjoying our lives but instead I am walking around feeling as though a black cloud is looming over my head. I don't know when it will stop but something has to give soon.

Fortunately, I am happy to report that our family is doing pretty well. Sydney, Graham, and Ainsley all appear healthy and minus the usual angst associated with being a kiddo. I think they are happy which is my barometer of success.

I am having difficulty enjoying my purpose and I still need a break.

4:49 AM 7/1/2005

Okay, I am back - briefly. Work is still incredibly hectic and stressful. Yesterday was a fairly typical (as of late)14 hour day. My body is seemingly adjusting to the total lack of sleep. This way though I still get to spend time with the kiddos. The reason I am writing, however, is that yesterday was a huge milestone in Sydney's life. Sydney went to camp. Now the camp was only a day long and the group of kids were all four and five year olds from Cook's. We saw many of our friends. It was strange seeing so many of them with hair. They were almost unrecognizable. Now I would love to tell you all about her time at camp but, you must understand, it is difficult to pull straight answers out of a four year old. Here is what I know.

At 8:00 AM Lynley, Graham, Ainsley and I put Sydney on a bus with about 20 other cancer survivors. At first, Sydney was a little apprehensive about going to camp on her own but she adjusted quickly. In fact, I think this was much tougher on Lynley and I than it was on Sydney. We also know that the camp was roughly an hour and a half away in Meridian, Texas. Now, those are the only facts that we know are true. For the remainder of the day Lynley and I would bite our nails and second guess the fact that we had sent our sweet little baby princess out into the real world on her very own.

At 5:00 PM the bus pulled back into the hospital where we were standing and anxiously awaiting her arrival. Almost immediately the nurses (who also served as camp counselors) came and got me to take me on the bus. There I found Sydney cuddled up across the bus seat sound asleep. I carefully and quietly picked her up and took her back to our car. She was plum worn out.

On the way home, and throughout the evening, we quizzed Sydney on her day at camp. We know she swam and we know that there were balloon animals but, beyond that, the only information we were able to gather was from the goody bag that she brought home. There we found pictures, hats, games, etc. and glimpses into what her day must have been like.

We still don't know enough. I think we may have to call Miss Katie today to get the full scoop. Until I know, I must get back to work.

There must be a light at the end of the tunnel. My purpose has to be my focus.

3:45 AM 6/6/2005

Well, I am back - at least temporarily. Can I tell you how much I don't like not being able to write in my diary. So much has transpired over the last weekend and I simply haven't had a moment to sit down and complete my thoughts. I know I sound like a broken record but work is hectic. I have been burning the candle at both ends for so many weeks I can hardly see straight. The stress level is so high it is nearly incapacitating. I am doing everything I can to calm down. I know that if I don't get a handle on things soon it will surely lead to a heart attack. I just have to remember to breath.

This weekend was a somber one. I know it should have been a happy 4th of July weekend but we gained another angel this weekend and little Ryan and his family were particularly close to our family. Late at night on July 1st he lost his battle to neuroblastoma. Yes, it brings home thoughts of the battle we are fighting with this damn disease but more importantly it is just sad for their family. His parents are, perhaps, two of the nicest and most loving people I have ever met and on the scale of being great parents they tipped it over. I can only imagine how tough this time is for them. It is a worst nightmare come true. The thought of it makes me physically ill and I just don't understand why and how this could happen to such great people. I know life is not fair but that is down right evil. As each day goes by it seems to make less and less sense.

Today is Lynley's birthday. Yep, another year older. I would joke that she is getting closer to being out of child bearing age and that we need to get busy but after having a little experience with three children and the severe lack of sleep it just doesn't seem nearly as funny. We will just try and make this a special day for her.

Life has just gotten in my way a little bit. I am tired and stressed but I know how lucky I am. I know all of this will pass but in the meantime I could just use a break. I so much want to spend carefree time with my family without my mind racing onto other things. I know what is important in my life. I have to relearn to not let stress affect me.

I need to let my purpose drive for a while.

4:58 AM 7/8/2005

Well, time flies. The next time I write in my diary it will be from New York. I have been under the weather for the last couple of days and am fighting to get my health back for the trip. Sydney, Deedee and I will be making this trip to Sloan. After much consideration Lynley and I decided that she and I and the three kids may just be too much to handle right now in New York. So, to make a long story short, this time we are going to split up our family again.

Yesterday Sydney had a clinic visit with Dr. Eames. I am happy to say that she seems to be the perfect picture of health. As always, we enjoyed our time with her and it was a great opportunity to catch up with all of our friends. Sydney continues to have sporadic pain but we believe that they are fairly normal. There does not seem to be any consistency to them and they are relatively short-lived.

It sounds sad but I am really looking forward to our trip to New York. For me it will be a chance to relax. Doesn't that sound horrible? But there, I will have the opportunity to focus on my family and get my priorities into order.

I'll get a chance to think purposefully.

4:38 AM 7/11/2005

Yikes! I overslept. I think my mind is really taking this "relaxing" to heart. We arrived in New York at the Ronald yesterday afternoon. DeeDee, Sydney, and I were pleasantly surprised to find the Ronald to be under a $1.1 million renovation and even happier to discover the brand new wide screen television in our room (801). Today will be the first treatment day of round 5 of the 3F8 antibody therapy. As has become the norm, we expect this to be a relatively long day but we have become accustomed to long first Mondays back.

On a side note I think both Lynley and I are in shock, each only having to care for half of our brethren. After talking to her yesterday afternoon we both realized how much easier it was when you weren't out numbered by the little heathens. After we left, Graham started digging through Sydney's toys back home and found their favorite yoyo. He spent the rest of the day with the toy cupped between his little hands and a smile on his face. He was also quite proud to announce on occasion that without his sister there it was "mine." Sydney on the other hand seems to be appreciative of the fact that she has some focused time alone with all eyes on her. I am not sure it is the healthiest attitude for her but she certainly seems happy to be the center of attention. In all actuality I think this will be an excellent opportunity for me to get to the center of some of the issues that we have seen since the birth of Ainsley. I imagine it is hard for Sydney, given her history, to go from being alone in the center of our world to sharing the space with her brother and sister. Although we haven't entirely mastered the transition I think this time alone will be an excellent opportunity to tie up any loose ends. It is a parenting issue that I am thankful to have the opportunity to focus on.

I am concentrating on my purpose.

4:40 AM 7/12/2005

Wow, what a day! Yesterday brought back all of the memories of the first time that we had 3F8 treatment. I guess it makes sense, after all, it had been 8 weeks since our last treatment. I should have been more prepared mentally. Sydney had an extremely tough day. The pain was far more intense than our last few courses and the Dilaudad also put a strong narcotic grip on Sydney.

Things really went smoothly for a Monday morning. Apparently there were some scheduling issues with Sydney's arrival but they were handled so well and so quickly we were oblivious to the shuffling in the background. In fact, it happened so quickly that by 9AM we had already had a finger poke, met with the nurse practitioner, and we were back in the bed area awaiting the premeds.

Sydney was very excited to get the process started although it would be a couple of hours before we could actually start. All in all, at this point, in was a perfectly normal day.

From about the first drip of 3F8 until well after the last drop hit her veins, Sydney was in significant pain. We dosed her with 4 half doses of Dilaudad throughout the hour long infusion but we were only able to gain brief moments of comfort. She spent much of the time screaming and crying.

After the infusion we let her rest for a couple of hours but she never really fell asleep and when we finally got back to the Ronald and convinced her to rest she continued to wake with sporadic aches and pains. Finally at about 6:30 PM she woke. I picked up dinner and we all shared a relatively complete meal. Within another hour Sydney would be back asleep for the night. I heard her cry out a few times throughout the night but, for the most part, she seems to be resting comfortably. Although she has complained of belly pain, the majority of her pain has come from her, well, "ankle pit" ( the part of the ankle that faces the toes) on both feet.

I am hoping that today goes far better for our little princess.

On another note, we ran into a close New York friend who has been a fixture in Sydney's life for as long as we have been coming to New York. She took the time to walk with us to the hospital yesterday morning. We were saddened to find out that our sweet friend "the teddy bear lady" lost her husband during the previous week. It makes me realize that even as bad as the last few weeks have been for me, and as bad as yesterday seemed for Sydney, we are still together and that our time here is a privilege.

Never forget what you have.

A purpose can be a gift. Don't forget to appreciate it..

4:30 AM 7/13/2005

It was a far better day for little Sydney. I am ecstatic to say that she is feeling much better and both the treatment and the Dilaudad after affects were much more tolerable for her (and us). She still seems to be crying out more than usual and she seems more argumentative (from the Dilaudad) but she really seems to be much better off and I am incredibly thankful that we did not repeat the day one episode again. Yesterday Sydney only required two half dose rescues. Her pain started about fifteen minutes into the infusion and although she continued to cry out for the remainder of the hour long infusion her O2 sats and heart rate stayed within the Daddy panic limits. Her O2 saturation never fell below 93% and her heart rate never climbed above 170 - a far cry from the day before when her O2 spent much of its time below 90% and her heart rate hovered around 200.

We were home, back at the Ronald, a little after noon and we spent a relaxing early afternoon watching cartoons, snacking, and (an old surprise) being a kitty. Anymore, the kittyness only seems to rear its head at times of stress or under the influence of narcotics. My guess is that it is an escape mechanism that she has developed to help her cope when times seem tough. At times it seems a little strange to us, now that she is 4, but I must admit that she seems happier when she retreats into Kittydom. I would rather hold and cuddle a little girl but if the tradeoff is that she is more comfortable in her skin at times of stress by being a kitty then I suppose having a kitty curl up in my lap is the next best thing.

I know it doesn't really matter in the big scheme of things but I am feeling better. I still have some congestion but the grip that business life had on my throat seems to have dissipated. I had spent several weeks where I was more tense than just about any other time in my life. My blood was boiling. My mind was racing. And. my heart felt like it was going to jump out of my chest. I have always been relatively good at controlling my emotions but the stress and anxiety of the last month certainly had me doubting my capabilities. My skin was crawling. I was anxious and I just could not get my self into the position where I felt that I had any control. I feared I was loosing my mind and my health (along with about 15 pounds) was slipping away. I feared for my life. I only remember one other time in my life when I felt such anxiety and that was during Sydney's diagnosis. Then I had similar feelings and I remember many of the same aberrations - the chest pain, the shortness of breath, and the multitudinous times I woke up with night terrors. The funny thing about it was that during Sydney's diagnosis it felt normal and I could make sense of it. This time however, for reasons that seem far less important, I just could not make sense of it which made getting a grip on myself that much harder. But now, well now, I am recovering. I feel better and I am more capable of caring for my family. Although my world still seems somewhat upside down I don't fear it and the time spent with my kids is no longer clouded by fear and anxiety. I am comfortable in my skin.

My mind is letting my purpose be my priority.

I am becoming happy again.

4:48 AM 7/14/2005

Yet another better day for Sydney. Sydney's 3F8 treatment went by like a flash yesterday. Before we knew it she was done. In fact, when the pump started beeping we were sure that we were ready for another 30 minutes to flush the remainder of the little mouse NB killers through the line but, alas, it was done. Sydney seemed to tolerate the pain and the Dilaudad far better than previous days. Sure there were tense moments of almost hallucinogenic anger but it was far better than the Monday. The pain, too, seemed to be more tolerable.

We made our way back to the Ronald a little after noon. Sydney experienced some nausea at about 1:30 PM. Within minutes of the episode she fell fast asleep not reawakening until about 4:30 PM in the afternoon. She seemed to be fully rested but never regained her appetite. After tempting her with several of her favorite foods we finally gave up after convincing her to eat some bread and a few Doritos. I imagine she will be quite the hungry little hippo this morning.

I am anxious to get through the remainder of this week. I had considered flying to Chicago this weekend for the CNCF's annual NB conference but given the nausea and some of the stranger occurrences that we have experienced this week I think it may not be such an excellent idea. I will really miss going and it is important that I be there but I think, at this point, it is more important for me to be with Sydney.

It looks like I have a split purpose this weekend.

3:51 AM 7/15/2005

It was another pretty good day for Sydney. The treatment went pretty smoothly and the patterns of her reaction seem to be more predictable. Anywhere from about 20 to 30 minutes into the infusion Sydney will start to complain of pain in the abdomen. We quickly treat this initial episode with one half dose of Dilaudid. That dose seems to get her into a more comfortable place although it is perfectly clear that there is some discomfort. After about ten minutes we usually treat her with another half dose of Dilaudid followed by a chaser of Vistaril. I know that these treatments can be different for every kid but it seems that many of these reactions seem fairly consistent. Although the timing and the amount of drug varies a "typical" treatment day (the kind you want) seems to follow this pattern. It is the sporadic unknowns and the odd reactions that you want to avoid. So when I say we had a good treatment day you have to take it with a dose of perspective.

Later in the afternoon Sydney would complain of nausea again. I think I have finally isolated where the pain is coming from. The reaction appears to come from her throat. Over the last few days she has cupped her mouth with her hand and other than facial expressions she will not talk other than to say "Owie." At first I thought it could be a reaction in her lips or mouth or that she just felt like she was going to throw up but I have since discovered that it is her throat that is hurting. Oddly enough it only seems to happen in the afternoon and it only seems to happen when she gets out of her bed and begins hopping around. It rarely (if at all) seems to happen while she is sleeping or resting comfortably on the bed. I am curious as to whether this is a common reaction or whether she is experiencing some kind of reflux.

Other than that I think we are hoping for a nice relaxing weekend. We have not discussed any plans but it will be nice to have a few days to just explore.

It will be nice to have some focused quality alone time with one of my purpii.

4:05 AM 07/18/2005

Time has gone by fast and here we are getting ready to start our final week of antibodies this round. Friday's treatment and the weekend went smoothly. On Friday, I had the opportunity to talk to the nurse practitioners and a few of the nurses about the throat problems Sydney had been having in the afternoons. Although there weren't any definitive answers this was something that they had seen before. Apparently some of the younger 3F8ers experience this type of problem. Now when I say young I mean much younger than Sydney but I was pleased to know that it had at least been seen before. The theory is that the 3F8 may cause some type of secretion which manifests itself in a thick clear mucousy substance. As these kids rest after the administration of the treatment this "stuff" just sits there pooling along the esophagus. Once mobile the kids develop a nauseous feeling and occasionally this reaction causes some sort of reflux. It is not reflux in the traditional since but it is a reflux in that the body tries to get rid of the "stuff". This would certainly explain what has been happening to Sydney in the afternoon. They asked that we watch it closely to ensure that she did not aspirate but that, at this point, it was probably not going to be serious enough to require medication. Besides, given the opportunity, we would always rather give her less drugs than more. Regardless, Friday afternoon appeared to be a little better. She recovered well and although she did not take a nap she was pleasant to be around in the afternoon. That was perhaps the biggest shock of the day.

Unfortunately, I missed my opportunity to go to the CNCF's conference this year. After talking to Pat last night I was pleased to hear that it went so well. I imagine she was tired but I was thankful that she gave me a call to give me the details. I admire her for her continued strength and dedication to all of our kids. She has been at this for quite a long time and I am always amazed and shocked at her ability to continue to do so much. I only wish that I could be there to do more.

Instead of flying off to Chicago for the conference I spent a fairly relaxing weekend with Sydney in New York. Although I had quite a bit of work to do we found time to visit central park, take a horse drawn carriage ride, enjoy a couple of hours at the Central Park Carnival, make a refill stop at the infamous Dylan's Candy Store, and, to top it off, spend several hours in Times Square seeing the sites and of course visiting Toys r' Us and the giant indoor Ferris Wheel.

All in all, it was a great weekend, but I am anxious to get through the week and reunite my family again.

My purpose seems content.

4:02 AM 07/19/2005

As much as everyday in treatment seems to be the same I am amazed at how much things are different. Yesterday, we had a visit from Cybil. The treatment went as planned. The premeds and rescue meds were all the same. But, for some reason, when she woke up, Cybil was there to greet us. I know it was the drugs but my little girl was atrocious. She was out of her mind, totally incomplacent and it seemed as if there was nothing I could do to keep her from screaming, crying, and throwing tantrums. She was clearly out of sorts. I tried everything to calm her down and, just as I did, something else would start her up again. For instance. (Calmly) "Daddy can I have a crayon?" "Sure honey. Here you go," I would quickly reply as I handed her a crayon. "Waaaaaaaa!! You don't love me, your not my best friend at all! I wanted the purple crayon not the red one," (as she threw the crayon across the room.) - Start of crying fit - Knowing her state I would quickly reach for the purple crayon and hand it to her, but, it would be too late. "I don't want the purple crayon. I want the red one!" Oddly enough, this is the one she just threw across the room. This behavior would continue until I could find a way to distract her to calm her down.

For a parent it is a mental challenge. Ordinarily I would discipline her if she ever acted out in this manner. But during these Dilaudad induced moments I have noticed that discipline only seems to make it worse. After all, she is not in her right mind. Instead I sometimes scoop her up and hug her snuggly. Depending on the episode this sometimes works but more often than not it just frustrates her more. Sometimes we try to ignore the behavior and although it seems to be the most effective tool to calm her down it makes me feel like a negligent parent. At other times we try and talk her through her feelings but on occasions like yesterday it is clear that there is no reasoning with Dilaudad.

I don't have the answers. It seems to be one of those things that you learn as we go along. But, I am amazed at how different it seems to be on certain days. She ate the same, she received the drugs the same. So what was the difference. How can I make her more comfortable? How do I help her control herself?

It is a challenge but this is what I am supposed to be doing. This is my number one job and I will figure it out.

After all, this is my purpose.

4:08 AM 7/20/2005

Sydney had another pretty good day. Tuesday's 3F8 treatment hit Sydney a little harder as far as pain was concerned but we were able to control it fairly quickly. Her pain started right at the 30 minute mark and it lasted for about 20 minutes before we could get in enough Dilaudad to get her back in the comfort zone. The first two half doses did not seem to help much but the third half dose's effects were nearly immediate and she rested fairly comfortably for the next 3 hours. When she woke up we had a visit from Cybil. The funny thing about treatment days is that Sydney never wants to leave the hospital. It is always a battle to get her dressed and back on the way home to the Ronald without some significant violence. To be honest, I would be content to stay there but, generally speaking, Sydney is still so hyped up on the Dilaudad that we usually force her to leave so that we can give the other patients some peace and quiet.

Yesterday evening we had a treat at the Ronald McDonald House. A gentleman from the Harmonikids organization was there to teach the kiddos how to play the harmonica. As an added bonus each child received their very own brand new harmonica. At first, Sydney was pretty shy and would only breath into the harmonica producing a soft, faint, muted tone. We sat through most of the lesson and Sydney never really played the harmonica at all. However, at the conclusion, when we went upstairs and she had some privacy she learned to do it on her very own and from that moment forward it has been a battle to get her to put it down for even a moment. Peace and quiet, too, seems to be out the window and at bedtime the harmonica was about to be too.

All in all it was a pretty good treatment day. Although we had some pain issues nothing seemed to be too far out of the ordinary. I like it like that.

Some days a predictable purpose is nice too.

5:09 AM 7/21/2005

This is the first time that I have slept in as long as I can remember. In fact, I slept for an entire 8 hours to the minute. It has been over a month since I remember sleeping more than 6. How refreshing. Yesterday started out as a pretty good day for Sydney. Her pain was tolerable and only required roughly 2 half doses of rescue meds. After the infusion she slept comfortably until the time we had to leave. Apparently it was busy up on the day hospital floor because about two hours after Sydney's infusion they asked if we were ready to leave because they were in dire need of a bed. We mobilized Sydney quickly and she seemed to wake up with less Cybil than before. Once back at the Ronald, however, things made a change for the worse. Sydney started complaining that her throat was burning. We suggested taking some water but she complained and said it made her feel nauseous. After my own internal debate I broke down and gave her some Vistaril. Within about 15 minutes the pain was gone but the nausea set in. She would have two episodes were she spit up small amounts of thick clear mucous. After an hour or two she was back to herself.

In the big scheme of things I am perfectly capable of dealing with a little nausea. In fact, I am now an official puke pro. The thing that bothers me about it is that this is something fairly new. Other than during this round of antibodies she has never experienced nausea after the infusion. Is something different in her little body? Is it neuroblastoma? Why? The problem is that these are rational thoughts and no one really knows the answer. So, that leaves a parent to wait and wonder until the next set of scans. Like phantom leg and stomach pains during Accutane this is something that I will overcome but the internal battle within my mind will continue.

Aah, the twerple is stirring. I have to get back to Daddy duties. Hopefully tomorrow I can talk more about this and a very lengthy and informative conversation that I had with Dr. Cheung.

Until tomorrow, for today I am well rested and full of purpose.

4:09 AM 7/22/2005

Wow, our very last day in New York. Sydney will have her treatment this morning and then, this afternoon, we will be flying home to reunite our family. I know things have been tougher for Lynley during this trip and I know she can use the extra hands when I get home. I find myself wondering how much Ainsley and my little Dudely have changed in our absence. As chaotic as home life seems when you are outnumbered by your little rugrats I can't wait to get home.

Yesterday went pretty well for Sydney. We had no sore throat or nausea episodes. Her pain settled in a little later than usual and only lasted about 20 minutes or so. All in all, I think it was a very successful treatment day.

The day before, Dr. Cheung was doing rounds. It had been several months since I had the opportunity to talk to him and I was thankful for the opportunity. It seems MSKCC has a lot on the horizon and, in my typical fashion, I splattered him with questions. On the immunotherapy side they have several new treatments coming out over the next year. First I believe is the "heated" antibody. This is supposed to be the "pain-free" version of the 3F8 and apparently you can receive an entire years dose in one sitting I did not get the specifics but apparently, by physically heating the antibody in a warm bath to a particular temperature, the theory is that you can forego the pain during the infusion. Another new item on the MSKCC menu is the vaccine which is due in the fall of this year. I did not have the time to go into what type of vaccine it was (i.e. autologous, etc.) but I was happy to hear that it was so close. Depending on when Sydney HAMAs this might be a viable option. As things are going now I would be surprised if Sydney recovers in time to participate in the Houston Trial (Heidi Russell's) before it is closed. So, to make a complicated story short, The MSKCC vaccine trial may be a good option for us. The third big happening on the immunotherapy front is the "Hot" antibody. They originally did a trial on this radioactive version of the antibody in 1987 and have been eagerly awaiting the long term effects studies before reinstituting this version of the antibody. Again, I don't have specifics but it appears to have few if any long term effects and the results were good so I think we can expect to see this trial very soon.

Well, I have to get running. There is some final packing to do in preparation for the day and a little work to be done before my sweet little squirt stirs.

TGIF purpose! We are going home!

5:05 AM 7/25/2005

Home. Sweet home. We are all back and in one piece. We had a super weekend together. I am pleased to report that Sydney's treatment on Friday went smoothly. We raced back to the Ronald, finished cleaning, and headed off to the airport. Sydney slept much of the flight and we were all ecstatic to find Lynley, Ainsley, and Graham there to greet us at the airport.

On Saturday Lynley took Sydney to the circus while I had the pleasure of watching Graham and Ainsley. On Sunday we relaxed and enjoyed some quality family time together playing in the pool and around the house. It was a fairly typical normal weekend but I really had the opportunity to relax with my family and appreciate how lucky we are. Graham and Ainsley were so thankful to have their big sister around and Sydney was always anxious to play with them. Whenever the little Dudely was napping Sydney would constantly ask me when he would awaken so that they could play. It was one of those weekends that you could really feel the love and the fun floating in the air around the Dungan 5.

Today Sydney starts another round of Accutane. Once again she will be taking 100mg per day, 60 in the morning(2 pills) and 40 (1 pill) in the evening. We will start the week by premedding each dose with some Vistaril to settle her stomach and of course we will be lathering her in vitamin E oil and Aquafor to protect her skin. With this concoction and plan we are anticipating a relatively smooth two weeks but we do expect to see some upset stomach and sporadic pain throughout. Hopefully her skin and face will continue to hold up well. Knock on wood.

All things considered I feel like a lucky man today but, then again, I have a purpose.

4:54 AM 7/26/2005

With Lynley back to work I had my first afternoon with the 3 kiddos. Lynley and I formulated a plan. If memories of the last couple of months served me I knew how chaotic it could be and now I was seriously outnumbered. If I was to maintain control I had to divide and conquer.

At about 2:00 PM I got home from work to find Graham asleep and Ainsley happily playing in her bouncy seat. So far so good, I could handle this. With huge visions of success I let Martha, our nanny, go on her merry way. I grabbed a salad out of the fridge and sat down on the floor by Ainsley. I figured that if I were going to win I should at least get one of them on my side. I ate my lunch with her there on the floor while I tried to win her favor. At about 2:20 I realized that it was time to get Graham out of bed. He wasn't sleeping and I could tell that he was no where close to it. Although he was quiet, I could hear him pounding his legs on the mattress in the room above me head. No matter, he obviously wasn't tired, so I prepared to get him downstairs and prepared to get him out the door. I changed Ainsley, placed in her car seat and carefully strapped her in. One kid tied down and one more to go. Then, I made drinks and sippy cups for the journey to pick up big sister from school. I ran outside to check that the car seats were in the car and turned it on to cool it off. The stage was set. I was ready to go.

I must admit, I was pretty proud of myself. Sure, I know, I had only "handled" one child so far, but I was ready and prepared. I then ran upstairs to get number two. The Dudely was ready and raring to go. I scooped him up, changed his diaper, put his shoes and socks on (correctly mind you) and headed downstairs to grab the cups and Ainsley. I made it to the car. No crying, no fussing, and no fighting. They were tied down (I mean strapped into their car seats) and I was in control. The car ride was uneventful but I took every opportunity to get in their good graces. After all, a two month old and a 17 month old aren't very conversational, none the less, I made I made funny faces and talked to them.

Once we arrived at school I had a moment where I lost control. I let Graham's feet touch the floor. Almost immediately he was off and running to the water fountains. Fortunately, Ainsley was happily strapped into her car carrier nestled under my arm. For better or worse, Sydney was enjoying snack time with her classmates so I had a few minutes to regain control and pack up her things before I was totally outnumbered. After packing up two school bags (one for her swimming stuff and another with her schools stuff) and making two detours down the hall to catch Graham I was prepared for Phase III of child rearing. With a voice which gave the illusion of control and authority I announced it was time to go. The trick here was getting Sydney to make her way out to the car. She is like the pied piper of Graham and I knew if I could get her going in the right direction he would follow. Like clockwork she said good bye to her friends and made her way down the hall and out to the car. Sure enough Graham happily followed along. I love it when a plan comes together.

Once in the car I tied (I meant strapped them in their car seats again) them all down once again and we made our way home. I was doing it. I had three children. I was in control. I couldn't believe it.

I took the long way home. I was formulating another plan to handle the chaos that would most certainly ensue once we dawned our doorstep. Luckily, Graham who had skipped his afternoon nap in favor jumping in his crib was showing signs of weakness. His eyelids were beginning to droop.

By the time I got home everyone was calm and collected and I clearly had a window of opportunity to get Graham down to bed. I carefully released Sydney from her restraints (car seat), gathered up Graham into my left arm (letting his feet hit the floor was not an option if I was to succeed) and scooped Ainsley tucked comfortably in her car seat into my right arm. I made a beeline for the door and as quickly as I could I set Ainsley on the dining room table and raced Graham upstairs. Soft music, a pacifier, a kiss on the forehead an I was in business.

I raced downstairs and pulled Ainsley from her car seat and then set her down in her bouncy seat. I then located Sydney and convinced her to eat a snack. I was winning... Can you believe it...

After some cheese, a piece of bologna, some yogurt and some polite conversation we ended our meal. Sydney ran out to the playroom while I cleaned and tended to Ainsley. After a while I went out to check on her and found her playing happily. She and I decided to do some mazes in her preschool activity book and with in minutes Mommy was home.

I did it.

Today I was proud of my purpii but, in a way, I was even prouder of myself.

How normal.... How wonderful....

4:50 AM 7/27/2005

You might be expecting to hear a story of failure on my second day of wrangling all three kiddos in the afternoon but you would me wrong. I am not playing games here. In a fight for parental sanity it takes planning, persistence, and dedication. Yesterday was an ordinary day. Sydney was on day two of Accutane and we were expecting the possibility of some nausea but I am pleased to report that - so far so good. In the morning I took off a little over an hour to take Graham to the little gym. He and I had a great time tumbling and jumping and running around. The only problem with the little Dudely is that he likes to take his own path. There were about 6 other kiddos in Grahams age group. All were there with their Mommy's and/or Daddy's. All would participate in the different games and activities that the instructor, Mr. Peter, had lined out for them. Well, all except for Graham. The Dudester wasn't really interested in sitting in a circle, singing songs, or sitting on the parachute. Instead he felt total chaos and running around on and jumping on the gymnastic equipment was a far better idea. He was not bashful or shy. He was ready to go. There was something strange about all of the other kids sitting in a circle behaving and having Graham run around the room. However, every time I corrected his behavior I got the big "No" head shake and he immediately went into limp noodle mode to escape my grasp. Don't get me wrong. He wasn't bad. He just had absolutely no interest in sitting there or playing on the parachute. Luckily, those activities did not last long and soon enough all of the kiddos were running around creating mayhem. Graham learned how to do a flip on the parallel bars and spent quite a long time walking on the balance beam and tumbling on the mats. All in all, he had a great time.

Later in the afternoon I would repeat my trip with Ainsley and Graham to pick up Sydney. The afternoon went much like the day before. We would follow that with dinner and a late evening swim with the kiddos. That is success. That is happiness. I find myself so incredibly thankful for the opportunity to spend such carefree time with my kiddos. Ordinary, yes, but I know it could be much different. Be thankful for what you have.

I am. But, then again, I have a purpose.

5:38 AM 7/28/2005

Mr. Mom is in the house. Today I get to stay home with the kiddos. It is once again that time of year that Martha goes on a church retreat to South Texas. It just so happens that I have to work this weekend so it is a perfect opportunity for me to dawn my domestic hat and do some serious child rearing. I am looking forward to spending some quality alone time with Ainsley and Graham.

Yesterday, Ainsley had a doctor's appointment. It was her two month checkup. Other than receiving four shots she and Graham enjoyed their visit. Ainsley is a little above the 50th percentile across the board. She continues to put on weight and is now 11 pounds 2 ounces. Dr. Debbie gave her the once over and gave her the seal of approval. After three kids I think we are finally starting to get this down.

Sydney had another good day. So far (crossing fingers) she has tolerated this round of Accutane superbly. We have not heard of any stomach complaints although the next two days will be critical in assessing her tolerance. Thursday and Friday have traditionally been pretty big nausea days so we are not out of the woods yet. On the mental side of Accutane, Sydney seems to be doing pretty well. We have seen some small outbursts but, for the most part, she seems to be handling it a little better. There is definitely a mental aspect to Accutane. Her behavior changes and ability to cope seems to take a nose dive. She is frustrated easily by the simplest of things but she seems to be dealing with it better than she has in the past. The difference between Sydney on Accutane and Sydney off of Accutane is clear to us and I think we are getting better at teaching her how to cope. For so long we have come to her rescue and now we step back and let her work through the issues on her own. By giving her space and letting her work through her issues she eventually experiences success. Those small successes help her self esteem and she seems to cope better. As a parent it is so hard to just watch your child get frustrated and do nothing about it. It seems so ingrained in a parents psyche to step in and save the day but I can tell you, first hand, it seems to be working. For better or worse, Sydney has been coddled. Who can blame her for that. Hey, who could blame us for that. She has been through more in her four years than most have endured in a lifetime. Never the less, we need to give her the tools to cope on her own and it seems to be working.

Purpose, if you love it, set it free....

5:04 AM 7/29/2005

Well, I am still here and actually, yesterday, went smoothly. It was as if I had done this before. I was fully domesticated. I even made a trip to the grocery store with 2 children in toe. Okay, so my mom stopped by the house and went with us but the point is that I was a full Mr. Mom, not some semi-committed half-baked baby sitter. I did the full deal.

It was a great day. I can not remember a time when I was so completely relaxed. I was in a great mood and felt as though the weight of the world had been lifted off of my shoulders. I spent the much of the day playing and entertaining the kids but a good portion of my time was spent performing domestic duties while the kiddos slept. It seems as though the next thing I knew it was time to pick Sydney up from school.

Sydney had a good day. There were no reports of nausea or of any issues at all. She elected to skip her nap but other than that both teachers reported that she did superbly. One of the teachers from another classroom even sought me out to tell me how sweet and wonderful she thought that my daughter was. That created the type of warm feeling that will keep your soul comfortable for weeks.

Well, I have another day of complete joy in front of me. I will be spending the first part of Saturday working but I am anticipating a relatively relaxing remainder of the weekend. There will be honey dos, child rearing, and chores but that is just like the icing on top of the cake.

I could do this purpii thing full time. I just need to figure our how.

5:24 AM 8/1/2005

August is already here! Time really seems to be moving at a fast clip. Thinking back on it, that last 2 + years have gone by faster than at anytime that I can remember in my life. I no longer remember the feelings of months like I once did. I used to look at my life based on activities, special occasions, and feelings that I had regarding a particular month but now it seems that I just recognize the seasons. I know it is hot now and I remember that we started going to New York when it was cold, but just about everything in between is a blur. I wonder if I purposefully block it out or if I am just loosing my short term memory in my old age. Perhaps, I am just living for the day. I don't focus too far into the future and I certainly don't dwell on the past. I guess, I am just appreciating this moment in life and no other.

The weekend went pretty well. Saturday was a blur. I worked from roughly 4:30 AM until a little after 2:00 PM. The kiddos got haircuts and spent much of the morning calavorting around town. By the time I got home Sydney was down for her nap and Dudely and Ainsley were playing with Mama. Sunday brought relaxation and although my honey dos were to tinker with a sticky front door and perform some touch up painting the day was completely relaxing. We spent much of the day relaxing and hanging around the pool.

Sydney continues to tolerate this round pretty well. We have had a couple of sporadic owies - one on the cheek and one in the head - but we are not alarmed quite yet. They seem to be short-lived and non-repeatable. Her skin has taken a tool this week. The sun block seems to irritate the skin on her cheeks and I imagine her face will start to peel significantly over the remainder of this week. Other than that we are one happy family.

One great big purpii.

6:21 AM 8/2/2005

I could not fall asleep last night. Work was racing through my head. I am no where near as busy as I was last month but there is still plenty on my plate. Regardless, I overslept which leaves me hear at a little after six in the morning. Further behind and tired. It is funny. I kept telling myself last night that if I did not go to sleep I would be further behind and tired. I really should learn to listen to myself.

Sydney had a great day. We have instituted a new reward board here at the house and Sydney has really taken to it. Basically, we have a board which allows Sydney to accumulate magnets for performing her chores, behaving, and doing good deeds. If she earns five magnets during the day then she gets a "happy" (a small present) before bedtime. Sydney earns magnets by doing things like cleaning up the toy room, not getting put in the naughty chair, taking a nap, sharing and being nice to her brother and sister, etc.. The difference in her demeanor during the first day of our new rules and rewards board has been incredible. That is not to say that she has been particularly bad just that she was incredibly good, helpful, polite, etc. It was almost eerie having such an incredibly good four year old. At the end of the day she got her happy - a small egg of silly putty. In her eyes it was as though she had moved a mountain. The sense of accomplishment and pride was evident in nearly every move she made. In short, so far, it was a complete success, accomplishing many of the goals we were trying to achieve.

Well, I have to run. I have a day full of work so that I can get down t some serious purpose with my purpii this afternoon.

5:05 AM 8/3/2005

It was another typical day on the Dungan home front. Sydney went to school, DeeDee took Graham to the Little Gym, and Ainsley stayed home. I received continued reports that Sydney is doing very well at school and for the second day in a row she earned all of her magnets. On the way home from school Sydney asked if she could go to Lynley's work and "hang" out. I quickly grabbed the phone and asked Mommy if we could come by. When we arrived Lynley came out to get Sydney and they would spend the remainder of the afternoon together. From what I understand they had a great time although there was an incident. Somehow Lynley got de-pantsed. Of course, I never get the good details but apparently, at some point while they were talking with some of Lynley's coworkers in her office ,Sydney tugged on Lynley's pants to get her attention and, sure enough, the pants came right on down. I am sure it was a horribly embarrassing moment for Lynley but I just couldn't help but laugh. Lynley is losing weight at such a fast clip nothing is fitting tightly anymore and little kid pant tugs can have devastating consequences. I told Lynley that if she was pregnant again she would not have that problem. Of course, she had no appreciation for my dark humor.

And that was really the big excitement of the day. Everything else was routine - just plain old normal - and I am incredibly thankful. It seems so nice to just be living.

Once again I find myself thankful for my purpose.

5:25 AM 8/4/2005

Okay, okay! So apparently there is some unwritten marital rule that I was supposed to intuitively know. But, here forth and henceforth a man that is married to a woman is not supposed to talk about her getting depantsed in a public forum under any circumstances. Supposedly the incident was quite em-BARE-ASSing for Lynley so I have agreed to make no further mention of the incident and refrain from making any similar remarks in the future. I fully realize the implications of my actions and the situation pulls at my heartstrings much like Sydney did to LYNELY'S PANTS. I feel that I have revealed too much, much like Sydney did to LYNLEY'S TUSHY. I realize that I have stripped the dignity of this family BARE, BUTT I am committed to rectifying my actions and promise not to expose the NAKED UNDERSIDE of our family secrets in the future. Additionally, I am committed to teaching my daughter from this mistake and I well let this whole PANTS DOWNFALL incident be a mechanism for others to learn by. Yes, a new day is here and I shall let the setting MOON symbolize the closure of this chapter in our lives.

See even your purpose can take it on the CHEEK sometimes.

4:54 AM 8/5/2005

Well, of course, I wouldn't have written that if I thought I was really going to get in trouble. All fun and joking aside, Lynley is my partner in this gig and I would never put myself in position to jeopardize that. I think that is one of the most important parts of our relationship - the ability to laugh. In fact, as our family has gone through this journey, it is that single ability that has let us maintain some semblance of sanity. We have been through a lot together and it is our teamwork, our love for one another, our trust, and our ability to keep putting one foot in front of another - together - that allows us to keep breathing. I am utterly amazed at what we, our family, and especially Sydney have endured (and continue to endure) over the last 2+ years.

I remember at the beginning of this journey. There was so much focus in my head about the loss of normalcy. Nothing would ever be the same. And, it wasn't, it didn't, and it never will be. But life is something new now. It is far more precious and I am far more appreciative of every moment we have. But life is normal. It is different but for us it is now normal. In most respects life is better than it ever could of been. Well, maybe it is just that I realize it. But the difference now is that although we have so much more appreciation and focus for what we have the great detractor from true happiness is the fear. You do learn to cope with the fear but it is there and it is dealt with daily if not by the hour and sometimes by the minute. For as long as are winning this battle the fear will exist until the day I die. That is the big difference. The fear is livable but it is always there.

Yesterday, we had a clinic visit and I had the opportunity to talk to Dr. Eames. As is the norm I spent quite a while talking to her. Of course, we caught up on Sydney's medical condition and status but we also glimpsed into the future. There is so much that is unknown and yet we are creeping closer and closer to the end of treatment once again. I remember what happened after the last time we stopped treatment and I have no ambition to go back there. I am able to deal with the fear because we are winning and we are doing something. But, the moment we stop doing something, I no longer have that and neither does Sydney. We are just waiting and waiting for disease to never come back when the statistics tell us something very different.

In some ways I will be so happy not to have to travel to New York for treatment. It will be so much easier on our family and not to mention our pocket book. But, then.... What do we do?

Searching for answers for my purpii when none really exist.....

4:37 AM 8/8/2005

It was a pretty good weekend - except... I remember last Thursday morning during my meeting with Dr. Eames very clearly. I told her everything was going very well. I stated that Sydney had tolerated this round of Accutane tremendously. Her skin was holding up. We had not seen any signs of nausea. Most importantly we had not seen any of the sporadic pains that we usually see when we got near the end of a treatment round. I was also quick to point out that we probably would still see some over the next couple of days and well into the next week. I was confident, I knew what I was talking about. I was prepared and I knew what to suspect. But somehow, I think I was looking for assurance that the phantom leg pains would be okay - that there was nothing to really worry about.

Sure enough, early Saturday morning at about 4:30 AM Sydney woke up with leg pain. It was in her left thigh and although she was not screaming in agony it was clear that she had pain. I climbed up into her bed and gently rubbed the sore area as she dozed back to sleep. It was one of those moments where you can feel your heart up inside your throat. After about 20 minutes I slunk out of her bed and went down stairs. I would not hear from her again until later in the morning.

When Sydney woke up she was still complaining about some soreness. We gave her a dose of Tylenol and within about five minutes it was gone. Fast-acting Tylenol if you ask me. Regardless, I was on edge the rest of he day and watched her closely for any sign of sporadic pain. None ever came - not that day or night - not Sunday - and not yet today.

The lack of pain makes me feel better although I still feel fear. Lynley is confident that it is nothing and finds it predictable. I just find it predictably scary. Hopefully, now that she has received her last dose of Accutane for this treatment round we will see the episodes start to subside. I would like nothing more than I nice quiet couple of weeks.

For this reason and more, I have a purpose.

Until the next time......

6:03 AM 8/9/2005

Yes, I know there are some compromising pictures of me. It appears Lynley is trying to perform some form of payback. For what? I certainly would not know - for I am a sweet loving husband and Daddy. Regardless, yes, that is me and my son in princess garb. Both my son and I (being manly dudes) are quite comfortable in our (he-man rough) skin and have no problem in participating in dress up activities. We certainly know our place in the home and if one of the queens tell us to dress up in princess dresses well then, by god, that is what we do. Yes, we have no shame. You try living with 3 women and see what happens to you.

I would also like to note that there are also pictures of us on Grahams' tractor. Please note, we have hard hats and everything. It is clear that we are gruff, manly men with purpose. Also point out that I am drinking a beer while operating my manly tractor (not that I condone drinking and driving) but which also hints at our hairy, tough studliness. Clearly we are not the tea toting princesses that we are being accused of.

Isn't life great!

This is what that purpose stuff is all about.

6:52 AM 8/10/2005

Well, we have been without internet access at home until just a few minutes ago so this will be short. Everybody is okay although Lynley has a confirmed case of strep throat and has been ordered home by her doctor. Sydney is doing well and, of course, Princess Graham (I mean Dudely), Ainsley, and Princess Daddy are doing great.

There was a lot that transpired yesterday - all having to do with insurance and BCBS of Texas continues to deny coverage and stimy us at every turn - but I will have to get into that on another day. For the time being I have to run. The Princesses are stirring.

Yes, a full day of purpose ahead.

5:16 AM 8/11/2005

Well, that is better - internet access. Where was I? Yes, Tuesday was a busy day. I have not mentioned BCBS of Texas for several months, partially, because I was waiting for the other shoe to fall. Well, it did! Several months ago, ironically about the time I was writing about it in my diary, BCBS told us (all of a sudden) that they were going to start covering our treatments at Sloan. They never said that they would give us a pre-certification (which they did not) but they said that they would cover the GM-CSF, Accutane, etc. and everything else would be covered out of network. Given that our out of network deductible was a little more than twice that of our normal deductible we weren't happy but accepted it as progress. Our next mission was to get BCBS to cover it in network. So we went along for the time being. We were at least happy that they were covering some of the expenses. We then called and asked that they change it to in network. They stated that it could not because they did not have a referral. The funny thing about this is, as we continued to fight for the pre-certification months earlier, they stated that our pre-certification was denied because all they had was a referral letter from our primary care physician and that they did not have the letter with all of the medical documentation and research support which was actually the pre-certification letter. After sending it 4 times and then by certified mail they finally owned up to having the pre-certification letter. However, once they had the pre-certification letter they no longer had the referral letter that they were using against us in the first place. For two months Dr. Debbie's office tried to file an additional back dated referral letter but (believe it or not) they would not let her and stopped her at every turn. This poor lady spent hours and weeks on the phone. Finally, we asked her, given all of her troubles, to file just a normal referral from that date forward and we would worry about all of the past dating later. For the moment, we just needed to get something on the books. After another month of trying she finally got them to take the referral and then promptly rejected it.

Now, as all of this was going on bills were continuing to get paid by BCBS but only at a fraction of the actual billing. We started to realize what they were doing and, in effect (instead of having one pre-certification letter to fight over with them to get this settled), by covering a portion of the items they have made every bill a battle ground. In short this means that if we get them to cover a doctors visit for 3F8 today it only means that they will cover that one visit. There is no precedent. So, it has no impact on the next days billing of the same exact service. BCBS has created a paperwork fight in which not only do we have to fight each date of service separately but each service that was rendered. With it taking weeks and sometimes months to fight over one bill there is no way for us to be able to straighten this mess out. They have buried us in red tape.

To make a very long story short we had to start taking some serious action and tomorrow I hope to have a moment to get into that. But, for now, I have to get to work.

Insurance is not my purpose although they WILL feel the wrath of it.

6:09 AM 8/12/2005

Okay, so where I left off was this: BCBS of Texas positioned themselves so that we could no longer fight for the treatment under the 3F8 protocol as a whole. We now have to fight each individual charge on its own merit. AND each item we get covered has no bearing on any other charges. So, if we argue effectively that receiving a dose of Vistaril should be covered on a particular treatment day and we win and we get it covered it only effects that one charge. So, if the very next day, under the same exact circumstances we receive a dose of Vistaril it will not necessarily be covered (probably won't if history serves us) and we will have to file yet another document to dispute the charge - which is commonly the case. Now, throw on top of that the fact that they are only covering about 20 cents on the dollar. Yep, since they have not pre-certified us under the trial they are not bound by any pricing agreement. You see normally when we are treated we receive a bill from the hospital. BCBS pays a portion of the bill and then since they are in network and have an agreement the prices are adjusted down to reflect their agreement. At Sloan that is not the case and when we are covered they only cover a portion of the charge and then add a little note that says they will not cover the rest because the amount of the bill is greater than what they think is reasonable to pay. So, guess who gets screwed.

The problem is that all of this gets down to a simple fact. You get medical insurance in case you ever have a medical necessity - especially when you would have one like the treatment of cancer. That is the reason you get insurance in the first place. For those with an exceptionally low level of medical risk tolerance you also get insurance with no lifetime limit - much like we did and pay for. Yet, when you get into something like cancer they will only cover what they believe to be justified even if you are going to 1 of the top 5 cancer treatment centers in the country and probably the absolute top for the treatment of neuroblastoma. For some reason, however, the medical professionals at BCBS somehow know better - even though, when I talk to them they don't have even a modicum of understanding about the disease. It is frustrating. Isn't the reason that you have an insurance card in your pocket because you want the ability to be treated by the best of the best if you have no other options.

While I am on the subject I still maintain a very simple truth. Had we stayed and been treated at Cooks with traditional relapse chemo therapies it would have been far more expensive to the insurance company (2 or 3 times probably) Additionally, it would have been far more toxic to Sydney and the long term effects and risk would have been substantially greater. Everybody seems to realize this except for BCBS. In effect we are saving them a ton of money and they repay us by trying to screw us to the wall. It just is not right.

Well, once again, I have to run. As a side note (can you believe that) everyone is doing well. Hopefully, next time I can talk about the important things in my life like my family but I will also need to tell you what we are doing about this mess.

This is not what my purpose should be about.

6:18 AM 8/15/2005

For a single day I am not going to talk about insurance issues. Today we can talk about the rugrats. Sydney starts her fall semester today with a new teacher. She has now moved from being a duck to being a full-fledged alligator (they use animal names to refer to preschool "grades"). Sydney has spent the last two weeks with the new teacher in her old classroom. She likes Ms. Nicole a lot and I think the sentiment is reciprocated. Although Sydney is not excited about the change to another physical classroom location I think the change will be good for her. She, like her mother, abhor change but I think that change is a fact of life and it is good to get used to things changing in life.

Over the weekend I spent some sleepless nights. Sydney experienced some leg pain (left shin) late Friday night and, as usual, it sent my mind racing to the worst of the worst. I know that, with Sydney, we can expect leg pain from Accutane the week after we have finished treatment but when it actually happens it always seems to make by breathing shallow and my heart feels as though it skips a beat. In and of itself, I was bothered by the leg pain but rationally I knew it was probably okay.

The following evening however I became down right terrified. Late in the afternoon Sydney developed a low grade fever. At about 5:00PM she registered at 99.8 and it lasted about two hours. She was not uncomfortable and the only reason it was noticed was because I kissed her forehead and noticed the warmth. Now, to a parent of a normal child this is nothing. Leg pain can just be a part of growing up and a fever can come from a multitude of things - the fact that she is in school, the fact that her mother has strep throat, the fact the everyone is in the house is sniffling and coughing, or the fact that her grubby little brother is constantly trying to drink from her cups. But, to a parent of a child with neuroblastoma these are ominous signs and ones that help the blood to boil. Two common side effects of relapse are bone pain and ongoing low grade fevers. The bone pain comes from the marrow as the disease starts to replicate in the marrow and the low grade fevers are from the body trying to fight off the disease. Yes, even though these little hiccups are quiet common to every living and breathing little squirt they still send shock and fear coursing through the bodies of their parents. I don't think there is anyway around it I can just say that as life goes on you learn to better cope with the fear but it always remains. This is why the next set of scans are always the most important ones that you will ever have in your life.

The one good thing about scans is when they go good. The days before, the days during, and the days as you patiently wait for results are always tense and scary. You body becomes paralyzed with fear and you spend days at a time with a lump in your throat. Even concentration seems hard as no matter what lays before me my mind always drifts to the what ifs and whys. However, on that day that you receive those good results. When all of those fears and frustrations are immediately flushed from your body a sense of calm and relief swallows you whole. For days and perhaps weeks you feel bathed in comfort and love. Yes, cancer brings some awful lows but when things go well, when life goes on, when you just learn that your life is as normal as anyone else out there in the world the high is incredible. It is like no other. Just simple normal life is so much more appreciated and that is one gift from this terrible disease.

Our scans are 10 days away.

I will focus on what is important. That is my purpose.

6:01 AM 8/16/2005

Yesterday was the first day of the fall term at Sydney's school. She is now a full fledged "Alligator." The first day went much better than I anticipated. Like I said before, change is not one of Sydney's strong suits and I was concerned even though she was just moving across the hall. As it turns out though my concern was totally unwarranted. Sydney had a great day and even took a long nap.

Today, Sydney and Graham both have dentist appointments. This will be the first time Sydney has been allowed to see a dentist since she was diagnosed and for Graham, well, this will be his first ever. It ought to be a very interesting trip. Although this would be considered a routine checkup I am interested to hear what Dr. Preece's impression is of Sydney's teeth. With all of the chemo that she has endured it will surely be interesting. I have seen some kids come out of the same regimen of chemo with little or no teeth left. Sydney's teeth have seemed to withstand pretty well (total assumption) but there is no doubt in my mind that it had a significant effect on her teeth. At this point, I am just hoping that it will not have any long term effects on her adult teeth when they come in.

Now back to insurance. We have tried everything within the insurance company. In fact, I am pretty sure we have tried everything 5 or 6 times to no avail. Time has always been limited to fight insurance matters. I guess I could have focused entirely on it instead of my family and Sydney but, for me, that was simply never a choice I was willing to make. I assume this probably got us into some trouble in that by the time we usually got the chance to focus on the problems they had already escalated. That is not to say that we did not do as we were supposed to when we were supposed just that we may have not refiled and refuted everything for the second or third time immediately.

So, to make this huge story shorter we have finally pursued the matter legally. Neither Lynley nor I have the time to fight all the battles and sift through the mountains of paperwork that BCBS has created. About two weeks ago we contacted patientadvocacy.org which is a non profit organization dedicated to this exact type of insurance abuse. After sending them our mountain of paperwork they reviewed it and said, basically, that we have done everything that could be reasonably expected and it was now time to deal with this using the courts. After about a week of legal review they referred our case to an attorney in Houston, Texas. He will be representing us in our case against BCBS of Texas.

I still don't know where this will end up but, quite frankly, it is no where near over in my mind. At this point I am so angry that BCBS treats families in crisis in such a manner that there will be more that needs to be done. They need to learn that this behavior is not acceptable and it shouldn't be tolerated by the public. The are intentionally denying coverage and creating burdensome paperwork for those that they know do not have the time or expertise to stand up for their rights. They are hunting the wounded. The slap on the wrist and the agreement to pay for what they should have paid in the first place is not enough. They have caused us an incredible amount of stress and anguish. They have cost us the refinance on our house. They have created a financial crisis in our family. And, most importantly, they have taken time and energy away from our family which is where it is and was needed to the most. I don't know whether the answer is going public (probably is) but what they are doing is criminal and something else needs to happen.

My purpose will continue to be my focus.

6:19 AM 8/17/2005

Yesterday we had our visit with the dentist - finally! It was both a good news bad news scenario. First and foremost it turns out that both buckaroos have healthy teeth. Dr. Preece even pointed out that although Graham had 4 teeth yet to come home he had big manly, clean, strong teeth. I pointed out that this must be the case as he came from my stock. The Dudely is an avid tooth brusher and spends about fifteen minutes a day brushing his pearly whites. Sydney also got the seal of approval. Both Lynley and I were concerned about her teeth but Dr. Preece said that they were in really good shape all things being considered. The kicker, however, will be her adult teeth. I don't know if time has passed me buy or whether I have simply become forgetful in my old age but, Sydney's adult teeth will, most likely, experience some late term effects. I am sure this was probably mentioned to me at some point during our journey but I had since forgotten. Dr. Preece stated that we should expect to see problems with Sydney's adult teeth. The issues could include malformed teeth and non existent teeth.

When we discussed the late term effects of her chemo with Dr. Preece it made since almost immediately but I wasn't particularly prepared for the conversation. All of this time I was worried about her baby teeth and I always just assumed her adult teeth would never be the issue. But, as it turns out, adult teeth are being formed in kiddos mouth from a very young age. Sydney was receiving high dose chemo from the time she turned two until the time that she was about three and a half.

Now, by now, we all know that chemotherapy is not very selective. It still is not smart enough to go after tumor cells only and focuses its strength instead on the fastest growing cells. Fastest growing cells include tumor cells, hair, and apparently baby adult teeth which are just starting to form. Because of this, the growth of baby adult teeth may have stunted or stopped during this critical period.

Now, Dr. Preece never said that Sydney was definitely going to have adult teeth issues but he was quick to point out that it was something that we should be prepared for because it was more likely than not. So, like I said, yesterday it was kind of a good news bad news type of scenario. The good news is that cosmetic dentistry has come a long way and it is likely that no one will ever know.

Sometimes a purpose is like a roller coaster.

8/18/2005

Well, I am off in a rush this morning so I really don't have much time to write. Everyone seems to be doing well although there is a fog of the sniffles making its way through the family. Everyone seems to have a cough but, other than than, seem no worse for wear. I have to run.

My purpii are stirring.

8/19/2005

The Dungan household continues to be a sniffle-ous place to be. Sydney is perhaps the worst off with a pretty significant loose cough but none of us are really feeling particularly bad. The symptoms seem to be more of a nuisance than anything else. Sydney's cough seems to be limited to times just after she has awoken and dissipates quickly thereafter.

Today is Friday and it seems as though just yesterday was Monday. This week has literally flown by and I am extremely appreciative of the fact that we will get an opportunity to rest, relax and recuperate before scan week sets in. This weekend we will began taking the SSKI (Potassium Iodide) drops to protect her thyroid from the MIBG agent and on Monday morning we begin our next round of Accutane.

This weekend we really do not have a lot planned. There are a bunch of honey dos that need to be completed as we prepare our house to get ready to sell. Other than that I imagine we will try to find some fun things to do with the kiddos. Perhaps we will go to the zoo or maybe just take a ride on the train around the park. The most important thing is that we will all be together and get to spend some quality family time together.

Just another quiet weekend of purpose ahead.

4:51 AM 8/22/2005

Well, here I sit trying to work which is probably completely futile but at least I am going through the motions. We are t minus three hours before the start of scans and to say I am nervous would be the understatement of a lifetime. I don't know that I really have any reason to be more nervous than I have been before but I can tell you for sure that my mind always focuses on the strange aches and pains that have occurred since the last set of scans. Not to say that we did not have strange aches and pains before the last set of scans too. Regardless, the next set of scans are always the most important in your life and this one is no different. The stakes are just too high.

Today Sydney will complete two of her quarterly scans. We will arrive at Cook's at about 8:30 AM for registration and begin drinking contrast at about 9:00 AM. This will be Sydney's first drink of the day. We will continue drinking contrast for between one and two hours before we have a waiting period of about one hour. She will then lie on the CT table for roughly 30 minutes (sans sedation) as they scan her from head to toe and back again. This time she will have the complete scan including orbits. Orbits are always fun with a non anesthetized 4 year old as she will have to lie flat on her back with her head hanging off the table at about a 45 degree angle towards the floor.

After the CT scan Sydney will be prepped for anesthesia and her bone marrow biopsy and aspirates. We are expecting this to begin at about one or two o'clock as she needs at least three hours between the last drop of liquid has been swallowed and the start of anesthesia. Other concerns for anesthesia will be a cough that Sydney has developed and although she is not sickly it just might throw a wrench into our plans. We shall see what happens.

It will be a long day for Sydney and her first meal will probably come late in the afternoon. I am comforted by the fact that she is still too young to understand the implications of these scans. She dose not have to bear the stress and worry and as much as I don't like it I will gladly carry that burden for her as long as she will allow me too. This will be a tough day followed by many tense hours and days as we await the results.

I have my purpose to comfort me.

5:13 AM 8/23/2005

It was a long day. It went perfectly smoothly mind you, but it was still a very, very long day. Everything went as planned and Sydney was a perfect little girl. She handled the waiting and the lack of food and drink better than I would have. She went through every step like a true pro. The most excellent news of the day were the results from the CT scan. They were totally negative. The only thing that was seen was a thickening of the wall of her right sinus cavity which is consistent with her cough and cold. We hope to hear about the preliminary marrow results today but it will be next week before we get the official results with all of the staining, etc.

The other fabulous benefit of the day was that we had the opportunity to be back to the hospital and to see our friends - many of our favorite nurses and medical staff were there. They still hold an incredibly special place in our hearts and it always feels good to be surrounded by so many caring and gifted people.

Today, Sydney will be going back to school. She has four pressure bandages, two on the front and two on the back of her hips, but if history serves us they should not limit her in any way. We are not expecting to see much pain and Tylenol seems to keep her pretty comfortable when flare ups arise. She will also be starting her final round of Accutane today. We were supposed to start yesterday but chose not to given the fact that she was NPO.

Tomorrow she will be heading back up to the hospital for her MIBG injection and then on Thursday she will have her final scan.

The wait begins.

I still have my purpose.

5:51 AM 8/24/2005

Still waiting. We were hoping to hear about the marrows yesterday but in re-listening to the message that Dr. Eames left us she said it would probably be Thursday or Friday before we heard from her again. Waiting is a funny thing. One moment you focus on all of the positives and the next minute you are considering all of the irrational conspiracy theories of why you don't know anything yet. You wonder why is it taking so long. Did they find something and are waiting to tell us anything pending further review? Are they waiting to tell us because they want to give us more time to have happiness before they unleash the news from hell? Is it so bad or so odd that she is waiting to tell us until she has consulted with others and developed a plan? Is she waiting to tell us when we will be there in person. Is she waiting for a time when Lynley and I will be together? What is going on?

My mind then jumps right back to the rational side as I evaluate all of my scary thoughts. Dr. Eames has never held anything back from us before. In fact, she has always given us the bad news as quickly as she knew anything. She has always told us what she knew whether she knew the answers or not. After all, this is Dr. Eames we are talking about. She is a part of our family. We admire and respect her so much we named our child after her. We did it because we thought her honesty, kindness and dedication (wow, those words to even come close to describing how strongly we admire her) were of such amazing caliber that we wanted our family to be constantly reminded of her incredible qualities. We have honored Ainsley with the gift of that name as we can think of no better person in the world that can serve as model for the traits that we think are most important in a human being. So, given that, how can I sit here and debate conspiracy theories in the back of my head?

It is this stupid evil disease. It is the fear. It is the unknown.

So, I shall sit and try to patiently wait. I shall drive the bad thoughts out of my head and continue to put one foot in the front of the other. I will enjoy the gifts that I do have and appreciate the fact that I am so incredibly lucky.

I have my purpii.

6:02 AM 8/25/2005

We still patiently wait for test results. Sydney spent the morning at school and just after lunch we made our way back to the hospital for her MIBG injection. Today, just after noon Sydney will have her MIBG scan, the final scan of the week. This ought to be quite interesting. Although she has now completed the MIBG scan twice without sedation this will be her first opportunity to do it Cooks. We are hoping that the timing of the scan leaves her relaxed and that, quite possibly, she might even take a nap on the table.

Everything else seems to be going pretty well. Sydney is doing excellently in school and in the afternoons, to our amazement, she entertains us with all of the things that she has learned. Currently they are studying the alphabet, Spanish, and sign language. Each day Sydney will educate us on a new word or new sign and her mind seems to be full of song. She seems to be singing constantly and it is clear that it brings her tremendous joy. Yesterday she even serenaded the nurses as they accessed her port. I am truly amazed - no, completely shocked - at how quickly and how much she is learning. The best news is that she seems to be happy.

Well, it is another tremendously busy day and I must run. My focus is still wavering as my mind continually drifts back to Sydney and her scans. It seems to take me longer to accomplish things. Hopefully today we will receive some tremendous news and we can all breathe again.

Sometimes my purpose seems to rest on pins and needles.

11:53 AM 8/25/2005

MARROWS ARE CLEAR!!!!!!!!!!!!!!!!!!

5:22 AM 8/26/2007

Scan week is over - at least we think scan week is over. Yesterday Sydney successfully completed the MIBG scan. There is always the chance that she could be called back today for some additional views but given the fact that we have not heard anything as of yet we can probably assume that nuclear medicine got some pretty good pictures. As has become the tradition (that I always kick myself for), I glimpsed at the MIBG images during Sydney's scan. I hate doing this because, as I am not a radiologist and I don't have training in reading this particular scan, I always see things that send a shiver up my spine. I should mention that I am also always wrong. During this scan I did notice that there was some increased uptake in her right thyroid in the top view. However, I must point out that the bottom view did not support this finding. I asked Margaret (she administered the scan) if this was due to her head position and she said that it was likely but in the end we took a side view of her head just to rule it out. Of course, I never got to see the results of that view. I have completely given up looking for uptake in her torso. There is always uptake in the area and I have never understood which organs are capable of lighting up anyway. About the only thing I can tell you for sure is that I did not see anything blatant in her tummy. Yes, all kinds of stuff lit up but nothing that looked like my memory of her first couple of scans after diagnosis where the tumor showed up large and solid black. Today, we should be receiving the results. As we were leaving yesterday they were dictating the results so we are just waiting for them to be transcribed and sent to Dr. Eames. It is our last hurdle. We are starting to breathe easier.

My purpose is almost clear.

6:18 AM 8/29/2005

Aaah, a nice cozy weekend. I am ecstatic to report that are MIBG results were negative. We skated through yet another round of scans. We are still waiting for the final RTPCR results from Sydney's marrows but I imagine it will be several weeks before we hear. To jog memories, the RTPCR is a very sensitive test for neuroblastoma and although they did not spot any neuroblastoma in Sydney's marrow or aspirates it is possible that this test could find extremely small amounts if it does exist. We are not expecting to hear that they will find any cells but it is another reassurance to be waited for. In fact, it is not something that they would normally voluntarily give the results for. It is something that we ask for because we know it is a test that Sloan will be doing on the marrows.

Either way, right now is a cause for celebration. This was a huge obstacle for us and although, for some, scan week becomes easier as time goes by, it just seems to become harder and harder for us. Perhaps it is because we know too much or perhaps it is because we really don't know whether Sydney truly relapsed or not but there is always a deep rooted fear of the worst becoming true. I guess I look at it like this. Given Sydney's history she probably fits into the neuroblastoma spectrum as potentially more likely to relapse than a typical stage 4 n-myc amplified child coming out of treatment with no evidence of disease and potentially less likely to relapse than someone who already has. Although this is probably not a realistic quantitation of her status it is the best that we can surmise given her strange findings last October. Her "status" is really unknown and I think if you polled the top neuroblastoma doctors in the world you would find that her odds are worse than someone who has not relapsed yet better than someone who has but, furthermore there is no in between - she either did relapse and her odds of overall survival are miniscule or she did not relapse and her odds are the same as any other child with stage 4 n-myc amplified disease. I guess that our position is to hope for the best and accept the facts that we are doing everything that can be done for her. We will continue to push the envelope, carefully balancing her quality of life and the need to do everything possible to win this battle. Right now, we are winning and thankfully we have scan results to celebrate and bask in the delight of.

Our purpii are winning.

11:03 PM 8/29/2005

Well I stayed up late working and I know I won't be waking up early enough to get this done in the morning so here I am. You know, when we first had Sydney - before we had any other little Dungan urchins around the household - I always doubted whether I could ever love another child as much as I do her. I just knew that there would never be enough capacity in my heart to love another child as much as I do my baby girl. Oh sure, I knew I would be wrong but I just never imagined being able to love another as much. I always secretly knew that I would have a favorite -- and I do.

You see, Sydney is my favorite because she is my oldest and because we have been through the most together. I have learned so much about my life through her struggle. I have learned compassion, understanding, and true happiness. Well, it goes far beyond that. This journey that we have been on with her has taken me to limits of human emotion that can't be simply written down. I have written over two years of diaries and have never been able to truly express my feelings about her in my own words. There is no doubt that she has had the most profound impact on me as a human being. I live and breathe life with an entirely new meaning because of her.

Well, you know, now that I think about it Graham is definitely my favorite. After all he is Mini Me. He is my studly little Dudely. He is what every dad could ever want. I could never want any thing more from a son. He is perhaps the most caring child I have ever seen and I cherish every moment that I get to spend with him whether it be cuddling up to watch The Wiggles or exploring the back yard through his eyes. He has given me a new perspective on many facets of life and he continually gives me the gift of reliving the fascination of seeing the world for the first time. He isn't totally verbal yet but he and I have a language that truly transcends words. In many ways he seems like my soul mate just 32 years removed.

You know, on the other hand, Ainsley has got to be my favorite. She is my youngest baby girl. Hey, and with all of the chaos that comes with living with a 4 year old and an 18 month old you have to understand and appreciate the quiet comfortable moments snuggling with your baby girl. Her life is new and yet just being with her gives me so much comfort and relaxation. There is simply nothing better than newborn eyes discovering you for the first time. Then, of course, there is the smile. That little smile that just gushes love. There is something to be appreciated about the simpleness of newborn life and Ainsley gives me the gift of total relaxation and the feeling of bathing in happiness. When I am with her it is though nothing else in the world matters. Her needs are simple and it is that simplicity that is so completely refreshing in this complicated world. Ainsley is my haven. She is just full of pure, unconditional, uncomplicated love - well, love and poo. (which also seems to be pure, unconditional, and relatively uncomplicated)

So, I guess I did have enough room in my heart. I love them all the most and they are all my favorites but for completely different reasons. I guess I am just a lucky, lucky man. I never realized that love could be compartmentalized. That, my friends, is reason for purpose.

5:40 AM 8/31/2005

You see, writing at this time in the morning seems so much more civilized. I am awake, alert, and feel like I have already accomplished mountains of work. Yesterday was a pretty good day. Sydney was a little out of sorts. That can be due to a myriad of things but the three list toppers have to be that she is on the second week of her last Accutane cycle, she did not take a nap, and, most importantly, the fact that colanders don't hold water very well. Strange statement you might say. No, not really You see, having three children is exactly like trying to hold water in a colander. When the colander is full it symbolizes the fact that there is peace in the house. Everyone is happy, comfortable and receiving the requisite amount of attention. It is our job as parents to make sure that the colander stays full of water and it is our job to plug any leaks that may arise. The problem is that there are hundreds of little holes and our hands never seem adequate to plug them all up. You see, about two weeks ago Graham's side of the colander started to leak. He seemed pretty unhappy and jealous of all of the attention that Sydney was receiving during scan week. It wasn't intentional and probably not even controllable but, through his eyes, every time he saw his parents they were either leaving with Sydney or coming back home with Sydney and on some days we would even continue to care for her once we got home. She was our primary focus because she was the most in need. She had to recover from anesthesia and she had to be rewarded for jobs well done. Regardless, that week she received the bulk of our attention and water seemed to gush from little Dudely's side of the colander. Being the adept parents we are we immediately tried to rectify the situation. We went back to giving Graham more attention effectively plugging up his leaks. We gave him some focus and made him a priority. We didn't do anything major but we made every attempt to equalize the treatment. For instance, medicine time for Sydney is a critical point. The focus is on her as we spend several minutes administering the various different medications that she will receive on any given day. We usually do this at breakfast and dinner as most of the drugs should be taken with food. Graham is always jealous that Sydney is getting all of these "extras" and wants to be "part" too. So, to make a seemingly wordy story short, we began to give him medicine too. Well, not really medicine, but we fill up a couple of Sydney's oral syringes with fruit juice and then praise him profusely as he takes all of his "medicine." This makes him feel equal in our eyes and it is little adjustments likes this that we made to plug up all of his little holes in the colander.

Unfortunately, the byproduct of doing even these small things had an effect on Sydney. She no longer felt special. Complicated by the effects of Accutane, etc. her side of the colander began to leak. You see, morning med time was her time to be special and by sharing that experience with Graham she was no longer special. (Yes, I know medicine time shouldn't be the catalyst for all that went wrong but like I said we made several changes in our lifestyle to "share" focus with the kiddos and that is just one example.) Now, however, we are taking steps to plug up the holes in Sydney's side of the colander without allowing Graham's or Ainsley's sides to leak out.. It is balance and it requires awareness and constant attention to keep all of the kiddos "full" of everything that they need to be who they are. For that reason, I can think of no better analogy but that of trying to hold water with a colander. It is a learning experience and it is a challenge but all of that doesn't really matter. It is our purpose.

5:46 AM 9/1/2005

Happy Birthday Grammy. We miss you and we can't wait to see you.

Sydney is in a funk. It seems to us now that she definitely has a case of leaky colander syndrome but we haven't been able to identify exactly what is causing the leak. She is pretty out of sorts. She is doing better with mom but seems to be instigating just about everything she can with me. In an effort to try and stem the tide I took her out on a "date" night, just Sydney and I, to see if I couldn't get to the bottom of it. I took her to Chucky Cheese which probably was not the best option for talking and getting to the bottom of her angst but it is where she really wanted to go and I wanted the evening to be about her so that is where we went. We had a good time but there is something still lingering in the air and I don' think we solved very much. I gave here pretty much everything that she wanted without question. This is very different than the norm and usually I do my best to not spoil my children. I try and work off of a reward system. and only occasionally do things or by gifts for the toys just because we can. Last night, however, I gave her everything that she asked for. I was looking for happiness but to be honest I had the distinct impression that had I not done those things a all out fit was imminent. Sydney just seems to be on edge. She seems to be a creature of extremes and the last few days have not seemed to bring much true happiness. When she is not upset it seems as though she is almost mantic and her moments of joy seem out of control. They are frantic uncontrollable moments of joy and can turn to cries almost instantaneously. It just seems strange for her.

We are hoping that what we are seeing is effects of the Accutane. I remember seeing behavioral issues with Accutane in the past but we haven't seen anything quite like this in the last few rounds. I imagine, however, that is exactly what we are seeing. Luckily, we have just four more days of the stuff. Today, we have a routine clinic visit. Sydney's skin is deteriorating rather quickly and she still has a bout of the sniffles which we fear is turning into an ear infection. It will be nice to have them give her a thorough once over.

Well, I have to run. This is a ton of work to do before we head out to the clinic. Purpii can be tricky but I will figure it out.

5:44 AM 9/2/2005

Sydney had a much better day. We arrived at the clinic at about 8:00 AM. There was much chatter as the hospital was preparing to bring in several kids from New Orleans. Apparently, there were already a few that had made it to the oncology wing but more were on the way. In fact, there were two families from New Orleans in the clinic. Sydney's check up went relatively quickly. Her left ear, although not infected, certainly seemed to be deteriorating. Candy, our nurse practitioner, elected to put Sydney on some antibiotics. Sydney has continued to sniffle and cough for the last couple of weeks and this seemed to be the best next course of action. That last thing we want to do is wait and have it develop into a full fledged infection right before we board the plane for New York. Sydney was a very good girl and although I still think our "date" night had little to do with the improvement, she was in a much better state of mind.

After our visit to the clinic Lynley brought Sydney back to the house where she spent the remainder of the day with her brother and sister. In the afternoon she would take a long three hour nap. Later that evening she seemed to be quite content and her angst seemed to have completely disappeared. At this point we are thinking that it is probably a combination of several things - the Accutane, lack of sleep, jealousy, etc. In other words, Sydney has leaky colander syndrome with mild infection and chemotherapeutic psychological toxicities. There, at least that doesn't sound like bad parenting. Although she seemed to be more comfortable in her skin she really did not have any opportunities to fall back into her old patterns. In essence, she wanted for nothing so she never really had to cope and it is the coping skills which seem to deteriorate with Accutane, etc. So, although I am ecstatic that she felt so much better yesterday, I don't necessarily expect the trend to last until we finish up the Accutane on Monday.

On the flip side of the coin, Ainsley and little Dudely seemed to be non leaky (colander reference). Ainsley is just as happy as she can be but continues to complain of the lack of respect and parental abuse that she experiences routinely in this chaotic world we brought her into. Okay, she doesn't talk yet but in the voice that I have given her that is what she is saying. She is actually quite clever for a 3 month old and seems to have an excellent grasp on sarcasm. Whoever said sarcasm was wasted on the young. Dudely on the other hand is at the stage where he is having trouble verbalizing his wants and needs so it comes out " eh eh eh eh eh eh eh eh eh eh eh (please assume that this noise continues until we figure out what he wants and give it to him)." It is somewhat annoying but, who can blame the boy, he is just trying to tell us what he needs. We are trying to substitute the never-ending "eh"s with sign language and words but, at this point, he still seems to prefer the whine. Hey, this stuff is parenting and I can deal with that any day. It seems like such small potatoes when compared to what is going on in the world.

eh, eh, eh, eh, eh, purpose!

5:46 AM 9/6/2005

Hmmm, and that was a vacation day. With three kiddos days off from work just aren't what they used to be. Now don't get me wrong, I like being home and playing with the little buggers. It is great to spend so much time with them but I certainly would not call it relaxing. Not to worry though, although they still constantly scan and test to find chinks in our parental armor they have not been successful at their ultimate plan of dividing and conquering the parental front. That is not to say that we did not get through the weekend without Graham sneaking off to eat some crayons with Sydney, the innocent bystander, there to cheer him on. All in all, it was a pretty good - active, but pretty good - weekend plus one.

Sydney has finished her final round of Accutane. Yep, you heard me. The final one. As in, that is it. Like, no more pills. Her skin is in pretty bad shape. She is covered from head to toe in peely skin and little red spots, scrapes, and bruises. I don't think that she is any clumsier with Accutane but it just seems like nothing really heals until we recover from the round. Ultimately, she goes through the two week period collecting the normal amount of 4 year old scrapes and bumps. All turn red and linger until well after the round is over.

Graham seems to be getting a little better. He is starting to verbalize more. His cravings are still announced with the "eh, eh, eh" beacon as soon as he processes our non response it quickly turns to verbal commands and sign language. His only incident outside of the crayons seems to be the permanent effect of bending his Daddy's nose. I guess this deserves a story.

You see, at about 7:00 PM everyone congregates on Mommy and Daddy's bed. This is a time to have a last drink of milk, to cuddle, to read stories, to talk, to watch TV, etc. Thank goodness we have a king size bed because once the bell tolls the rule is that you have to stay on our bed or you are going to your room to go night, night. We developed this rule to keep the little twerps from destroying our room and themselves in the manic minutes before bed time. Now everyone knows that once we say it is time to get on the bed we are serious and even the slightest scrape of a tootsie on the wood floor means a trip straight to their beds.

Well, not only do we get on the bed but we apparently also have positions. I am on the left side and Lynley on the right. Generally, if one of us is not feeding Ainsley, she is in the middle. Sydney, the daredevil, is at the foot of the bed where she will generally stay with her feet dangling precariously off the bed as she continually tests our resolve. But Dudely, well Dudely is on me. It doesn't really matter where I am or what position I am sitting in, the little twerp is somehow sitting on me. I am referred to as "Daddy chair" and wherever I am you could expect to see Graham sitting on me, on my legs, on my belly, or my feet. But you can safely bet that he is somehow sitting on me. Now, sometimes he test the bounds too. He likes to stand up and yell "sit!" so for him we have added the stipulation that you must be on the bed and sitting or lying down. In effect, what this has done is that whenever we tell him it is time to go to be he slams his head down behind him and begins to suck his sippy cup fervently. He knows that we will not put him to bed if he is drinking his cup. So, you have to picture it in your mind, no matter what position he is in he will slam his head backwards the moment night time is mentioned. Well, you see, last night he was sitting on my belly watching the TV when I announced that it was bed time. As I reached up to grab him from behind to lift him up he slammed his head back - right back into my nose. He hit hard and for a moment I was sure he had broken my nose. He hit me with such force it took me a minute to figure out where I was and what happened. I recovered fairly quickly after that but after Lynley's son was put to bed I wandered into the bathroom where I noticed that the tip of my nose now pointed towards the left side of my mouth. It did not feel broken and, to be honest, it really wasn't even that sore but I'll be damned if my nose isn't pointing in the wrong direction. So, there you have it. I took one for the team and now I have a crooked sniffer.

No matter, I still have purpose and I can almost smell it.

5:27 AM 9/7/2005

It is already Wednesday. I love short weeks. Yesterday was somewhat eventful. Ainsley woke up covered in a rash. The rash, which extends from her chin down her front side to just above her diaper line, is red and made of hundreds if not thousands of little red bumps. Luckily, Ainsley hasn't noticed it and it doesn't seem provide any discomfort at all. The previous evening Lynley applied some of Sydney's vitamin E lotion on her and we are assuming that it was the catalyst of this somewhat gruesome rash. It was the first time that we had ever applied this lotion on Ainsley. Nevertheless, I packed her up and we visited Dr. Debbie later in the day. I told Dr. Debbie that she most likely had a case of "don't do that ever again" but she was somewhat more skeptical. Apparently, there is a virus going around that causes a rash similar to the one that was on Ainsley. Although the most likely cause of the rash is a reaction to the cream she told us to a) don't do that anymore and b) apply some hydrocortisone cream and (c) watch for any signs of spread which would be indicative of the virus. Dr. Debbie really felt like it looked like the virus but was perplexed by the fact that it did not come with fever. Generally, if Ainsley had the virus, you would see fevers and possibly a rash but rarely just a rash. So, for the time being, we will do as we are told and assume that it was probably just a reaction to the vitamin E cream.

At least my purpose isn't itchy.

5:44 AM 9/8/2005

I think Ainsley's rash might be getting better. It appears less red but she is still covered. I can't believe that she is not uncomfortable but she has not shown one sign of discomfort. However, just as it seemed that we might sneak by this rash with out any further incidence, Sydney spiked a fever yesterday afternoon. I watched it pretty closely throughout the afternoon and then we finally called the oncology doctor on call. Her fever wasn't yet official. It was 101.2 (the "official" fever threshold is 101.5.) We were trying to preempt a midnight call to one of the physicians because, as we watched, we noticed it was tending to climb its way upward. I spoke to Dr. Griffin and gave him the facts. "Sydney has a fever of 101.2. It has been slowly climbing all afternoon. She was last seen in clinic on Thursday and was given a prescription of Omnicef to preempt a bourgeoning ear infection. We have not seen any signs of discomfort. She finished Accutane on Monday. She is not neutropenic. She does not appear to feel ill and her activity appears to be normal." With that, Dr. Griffin gave us the "give her some Tylenol and call us in the morning if the fever has not subsided. Call us back if her condition deteriorates or if her fever spikes above 102." If you ask me that was the best advice we could have received. We just knew that, if we had waited, the fever would have waited until around 11:00 PM before it became serious and we would have, more than likely, made a trip to the ER.

Just before she went to bed last night we gave Sydney some Tylenol. As of bed time she was still not showing any signs of slowing down. Of course I am hoping that we do not see any further signs of fever but it would not surprise me. We are back in that strange week that follows Accutane and I have come to expect the unexpected.

So, there you have it - a rashy twerp, a hot twerp, and a nose bashing twerp. What a week? What a purpose!

6:22 AM 9/9/2005

Well, the good news is that Sydney's fever disappeared. She woke up yesterday morning no worse for wear and ready for another day of school. Ainsley continues to appear less red but the little bumps continue to linger. They do not appear to be spreading but they are not going away either. She must have a thousand little bumps on her torso. Graham has now fallen victim of whatever this is. Yesterday he woke up in a fowl temper with a low grade fever. He had the "snots" and was not easy to appease. He spent much of the day in bed and only had a small window of time in which he was complacent. He is out of sorts and clearly tired and uncomfortable.

I am hoping that something miraculous happens today. I would like to see everyone get better so that we can have some fun this weekend. I have no idea of what we may do but this is our last full weekend before we head back to New York for another treatment round on the 17th. Did I mention that we are all going? Oh yeah. Daddy, Mommy, Sydney, Dudely, and the hopefully rashless Ainsley - all together - all in the same room at the Ronald - all eating together - all sleeping together - all together. Don't get me wrong, I think it ought to be very, very interesting. Lynley and I have not yet developed a game plan but I can assure you we will not go unprepared. At the very least it should make for a somewhat comical two weeks and the important part is that we will all be together as a family - sane or not.

As you can probably tell I had a late start this morning so I had better get on my way.

I have to prepare for my purpii.

6:00 AM 9/12/2004

We had a relatively calm weekend. The kids all seem to be recuperating and Lynley and I spent much of our time preparing for our trip to New York and finishing up the kitchen. I can't believe we will be leaving in less than a week. Time really flies by.

Sydney seems to be doing pretty well although she was somewhat out of sorts this weekend. I think 4 year olds have a switch in their heads which turns on and off the ability to listen at will. I don't mean a hearing aid switch. I mean a switch that dictates whether or not she chooses to listen to her parents. For me, Sydney is the hardest to discipline and, so far, she is also the most defiant of our children. It is probably her age but she is the clear leader. I sometimes get frustrated with her. It is not because she is defiant or because she is stubborn. Heck, that is what I should probably expect from my stock. What tears at my heart strings is guilt. I treat Sydney the same as the other kiddos. Well, I might be harsher or more strict but that is due to her age and the fact that I have more expectations for her at this point. But the one thing I definitely feel with her that I don't feel particularly with the other two is guilt. Every time I discipline Sydney it comes back. GUILT. I feel it constantly with her. It is hard to explain but every time I sit her in the naughty chair or discipline her in any way it comes. I feel guilty for all that she has been through and all that she will continue to endure. I fear that if this ever came back that I have wasted so much time disciplining her when she could have been happy. I feel like she doesn't deserve it and that I am being unfair.

Some days she is the perfect angel and all is right in the world. I am at peace because she is happy and there seems to be no doubt in my mind that I have chosen the right path. But, other days, I never feel such relief. This is one of those things that as a parent I think you have to suck up and just do. I don't know that there are any true answers but I know one thing for sure. I have to treat Sydney as normal. I have to give her the tools to have a successful life whether I feel bad about it or not. I know she has been through more that I will ever know. I know she was not dealt a fair hand. But isn't that more reason to give her the tools to deal with the traumas in her life? I shouldn't be whining about my issues. It could always be much worse. But I am pretty sure that the are others in my shoes that have or will have to deal with this feeling in the bottom of their gut and I guess it feels pretty good to know you are not alone. We all have moments of weakness and it is always nice to know that the path you are traveling has been traveled before.

Purpose and guilt - a tricky combination.

11:04 AM 9/12/2005

Well here I sit on another sleepless night and I know I won' be arising early enough in the morning to write in my diary so here I sit. I was going to talk about Sydney and how I still felt guilty but when things seemed tough there was always seemed to be light at the end of the tunnel. You see after rambling about feeling sorry for myself because I did not feel like I was being "fair" to my daughter I was reminded of what an incredible little person she was. I saw firs hand how all of the things that we had been teaching her was paying off. I saw how she was turning into the wonderful big girl I had always dreamed her to be.

I new kiddo started in her class at school today. He is a little boy from New Orleans that had been displaced by the hurricane. I imagine he was scared out of his wits. Just think of all that he had been through in the last two weeks and then, to top it all off he was starting at a new school, with new teachers, new surroundings, and all new people. He is almost 4 years old. Think about it. A small child. He just lost every thing he knew, everything that was familiar, and likely, everything he had ever known in his life. He must have been scared. I know I would've been.

Anyway, Sydney befriended this young man. From what I understand, of all the kids, she was the one that tool the initiative to be this little boys friend. I must admit. I am absurdly proud. The teacher, Ms. Nicole, told me how wonderful Sydney was to this little boy. In fact, she said Sydney was her "life saver." Sydney took the initiative to be nice to this little boy, to be his friend in a strange new world and to let him know it was okay. We had explained to her beforehand that a new kiddo would be at the school. We had asked that she be nice to him. But, we didn't know that she would actually do it. She made it her little mission of the day to do everything she could for this little boy.

To me, it is phenomenal. That is what I want from my children. I want them to be compassionate. I want them to be there for others. I want them to be kind. I want them to lead with their hearts and follow with their minds. To me, that is success and that is what parenting is all about. To be honest, Sydney could be Miss America, she could win the noble prize, she could be President, but I don't know that I would be any prouder of her than I was today. I don't know whether it is nature or nurture or something else that gave her compassion and kindness to her fellow man but to me it is one of the most important lessons in life and I could not be prouder of my little girl.

That is what I wanted to talk about today and for a moment I was able to escape my other purpose here. I received some heart wrenching news today of another young man who gained his angel wings. Lance was treated at Cook's and was diagnosed about a year after Sydney. He had neuroblastoma and his journey ended in his family's arms on Saturday night. I was somewhat close to his mother. I have spent many hours sitting out in front of Cook's on the park benches talking to her over the last year and have come to know there family pretty well. Every child that faces this damn disease has gotten a raw deal but I amazed by the quality of the children it takes. It is as if it picks out the special ones, the gifted ones, the ones that should never have been picked at all. Perhaps, it is the perspective. Perhaps, we don't really realize how special each and everyone of our children are until it is too late. Regardless, it will never make any sense.

So, tonight Lance is the new kid. He is in heaven, in a brand new place, with new people, and new surroundings. Let's take a page out of Sydney's book and say a little prayer for him tonight and make sure he feels loved and comfortable and safe.

Purpose........

5:15 AM 9/14/2005

Today is Lance's funeral. Lynley and I will be attending this afternoon.

We are in high gear. We leave for New York on Sunday and seems like there is so much to do. I still can't believe that all five of us are going. It will be great to have the entire family together but it definitely raises the stress level. Just getting there ought to be a feat within itself. We will be traveling and outnumbered by the little twerps. Somehow, I think security at the airport might be the funniest part of all. How are we going to get all of through the metal detector without losing somebody? Logistics -- I will just have to plan harder. I have this image in my head of Graham terrorizing the security guards and causing mass mayhem. All, of course, under the direction and supervision of Sydney.

Today, Sydney begins her GM-CSF shots. She will receive them once per day throughout this next treatment round. This is no different than any of her other treatment rounds with 3F8. The idea is to boost her white cells with the killer instinct to aid the 3F8 in the hunt and destruction of any little neuroblastoma cells they might find along the way.

Well, I have to run. It is going to be a hectic day at work and I still have to devise a plan to get the kiddos through security.

It is another day of purpose.

5:48 AM 9/15/2005

Yesterday was one of those days that seemed to stream through your mind in fast forward. It started very early as I learned that a close family friend was potentially stepping into a world much like ours. My mind flittered back to the first days just before Sydney's diagnosis and I relived those terrified and chaotic moments as we discovered that Sydney had cancer. Facts are still vague but our friends who live in El Paso took there 2 and a half year old daughter in to see the pediatrician. To date, their little princess had always been normal and spunky but now she was beginning to slur her speech, the spunkiness seem to have left and the left side of her mouth seemed not to work. After a late night MRI and the shuffling of medical records back and forth to oncologists and neurologists the belief is that there daughter has a brain tumor and based on scans their speculation is that it is malignant.

Before I even noticed I was thinking "Those poor people. How could this happen? I don't know if I could bear it. That poor family. That poor child." In many ways we were lucky. In El Paso, they don't have the medical facilities to deal with this so as of last night the family was supposed to pack up and leave. In the midst of all of this chaos and terror they have to leave their home and their friends to fly somewhere for who knows how long. Last I heard they still had no idea of where there daughter would be sent.

For them, these are the hell days. The worst days of their life. Not just bad but evil. I guess unless you have had a child with cancer or some other life threatening condition you just can't understand the level of pain but I am quite sure it is worse than any other except the loss of a child. I am praying for there strength and for there ability to make it through the coming weeks.

This news was followed closely by our kids awaking. I hugged them overly hard as Lynley and I quickly readied them for school. Yesterday was also Grahams first day of Mother's Day Out at Sydney's school. Details are somewhat shaky here as well but from the information I received he had a fabulous time and from what I can tell the school still stands and no one was rushed out to the mental ward. My little havoc reeker was apparently an angel.

After noon Lynley and I went to Lance's funeral. There we saw Krista and Dease, hundreds of Lances family and friends and, of course, in the back a collection from our NB world. There must have been 7 or 8 families of angels or children with neuroblastoma from Cook's. I guess we have become somewhat of a club - an utterly odd collection of people united by this terrible disease.

The funeral was nice and I was glad that we had the opportunity to go. Lance was such a strong young man and I left full of purpose and the feeling that I had learned something about myself through him. I will be a stronger person because of the way this 14 year old has touched my life. That, I suppose is part of his legacy and I think he left a little part of that with everyone he met.

The rest of the afternoon and evening was also a blur, so much so, that I can barely remember a thing and, to be honest, I don't know if I had the capacity to take in any more.

My purpose was strengthened yesterday. Lets hope a family, just relocated to somewhere in the world, can find a little of it today.

5:38 AM 9/16/2005

Just a quick update. My mother and I drove down to Texas Children's in Houston to be with our friends and their daughter as they entire the cancer world for the first time. Annabelle is an adorable 2 and a half year old little girl and I find myself absolutely taken back. I just can't understand why cancer seems to pick such incredible children. Today, cancer makes even less sense than it did yesterday. Although there is some speculation as to exactly how aggressive the tumor is that resides in her brainstem it is very serious. There parents will have some extremely difficult choices to make over the next few days. God, I pray for their strength and your guidance.

Right now, my purpose, and my love for my family is about the only thing that keeps me from breaking into tears.

4:50 AM 9/19/2005

Well we have arrived in New York city. Internet access is a little sporadic so it is likely that this will be posted a little late. As you might expect the last few days have been a whirlwind. Dee and I arrived back home in Fort Worth from Houston on Friday. Saturday was a mad dash to get packed and Sunday, well, Sunday has a full day of traveling for the Dungan five. I can tell you that we are all safe and sound. I can tell you that we are ready to start the treatment today. I can tell you that the trip was only somewhat eventful. But, to be honest, it still is not where my mind is. To say the trip to Houston affected me profoundly would be an understatement and I simply can not get the experience out of my mind. I have talked to hundreds of families before but never this close to diagnosis. It is one thing to say it is terribly sad or heart wrenching. As human beings we naturally feel sympathy for a two and a half year old and her family when something this tragic occurs but to be there, to be close, to experience it, is totally different. I guess what I am trying to say is that I have also talked to many other families and although all cancer diagnosis affect me, my reaction is usually anger and sadness. To some extent, though, there is a protective shield around me. This time was different. This time it felt like Sydney's diagnosis all over again. I could taste it. I could feel all of those feelings that had been absent since the beginning. It is really hard to explain the feeling that you get when your child has been diagnosed with cancer. I can compare it to nothing else. There is complete helplessness and emptiness. Shock is constant companion. I don't been "shock" as in it "shocked" me. I mean shock as in the medical condition. Your mind does not work properly. You can go for days with out remembering to eat or drink and I am pretty sure that if it was not an auto response you would not remember to breathe. You forget words spoken just seconds before. The body you walk in does not feel like your own. Sleep is characterized by sporadic moments of uncomfortable worry and fear punctuated by jolts of sheer terror that wake you. Your soul seems to be empty as if everything you have ever known about yourself comes into question. Beyond these terrible feelings are the normal ones. Body and mind are compromised by sleep deprivation. Most days you walk the halls of the oncology ward with that feeling that you have not slept, not in days, but weeks. Breathing seems shallow and you never feel like you will get another breath.

I make these distinctions because "profound sadness" is not descriptive enough. To say I feel their sorrow is not enough. To say "how horrible" does not even touch the tip of the iceberg. If you earnestly sat there and thought about your own child being in this position. If you thought about them dying. If you though about them being in the hospital and receiving all of the things that these kids do minute by minute and day by day. If you really, really picture them dying. If you did all of this, then maybe, just maybe, if you multiplied those feelings by a million it might accurately depict what this family (or any family that has a child with cancer) might be feeling.
I tell you all of this to help explain. This is as close as I have come to those feelings as I had since Sydney's diagnosis. It affected me so completely that at its conclusion I found myself alone, retching into a toilet in the bathroom. I had forgotten and yet I live it everyday.

It is one thing to say you have a purpose. It is quite another to feel it.

4:14 AM 9/20/2005

It just so happens that if I sit right between the toilet and the sink, hold my left arm in the air, touch the faucet with my hand, and crook my head to the left at a 45 degree angle I can get internet access in my room. So, here goes. Sydney had a pretty good day all things considered. I gave up my finger holding position (Sydney likes to hold an index finger while she is receiving antibodies) to Lynley and I was in charge of watching Graham and Ainsley. I was able to poke my head in every few minutes and am delighted to see that everything went so smoothly. Now, don't get me wrong. There was pain. But, for a first day back after a long break, Sydney tolerated the treatment very well. Also, we made the addition of Ativan to her usual pre medication cocktail and it seemed to calm her nerves a bit.

I, on the other hand, was blessed by the presence of Allie, one of our New York friends. She stopped by to drop off some presents for the kids and stayed around to help me watch the kiddos as Sydney underwent treatment. Ainsley was a perfect angel and Graham, well, Graham was Graham. He was happy to be there and to be in the midst of all of the action. He spent much of his time in the playroom and thankfully abstained from setting off any fire alarms.

At about 11:00 AM Sydney completed treatment and we were ushered out as the afternoon group of 3F8ers were waiting in the wings. Sydney was still groggy. The good news was that the Ativan appeared to keep her post Dilaudad temper in check. I scooted her back home without incident to find Graham and Ainsley bedding down for their afternoon naps. The kids would rest for a little over two hours.

The Ativan really seemed to help but Sydney did have some noticeable outbursts as she came off its effects. Late afternoon brought several irate outbursts which left Ainsley and Graham somewhat frightened. We will have to develop a plan to get them out of the immediate area when she is coming out of her narcotic funk. Later in the evening Graham even replicated some of Sydney's outbursts. We think he was just testing his limits but it is clear that he was imitating his sister.

Later in the evening we went out to dinner at the Wicked Wolf and then returned to put the kids to bed a little bit earlier than usual. All in all, it was a pretty successful first day and an excellent learning experience for the days to come.

Some days I just feel like I have dysfunctional purpii.

3:59 AM 9/21/2005

Wohhhhhh! Ativan is going to be taken out of the mix. Last night was perhaps the worst that I have ever seen Sydney. She was absolutely out of her mind and out of control. I have never had to restrain my daughter to keep her from hurting her self -- until last night. She was screaming and flailing and kicking and crying. There was absolutely no reaching her with any logic or reasoning. I am trying to remember what started this particular episode but it was so bland that it has slipped from memory. I can tell you that during dinner something seemed to snap. I don't know if it was because we did not have butter for her bread or if it was because she wanted to get down but all of a sudden she seemed to turn. We tried reasoning with her. We tried putting her in time out. But the more that happened the worse it got. After a minute in time out she decided that she was not going to obey and every time I sat her in the corner she would try and run. I suppose that happens but it had never happened before. I would calmly put her back in the spot but it just seemed her anger and determination just seemed to escalate. After about five minutes of noncooperative time out time Lynley and I finally decided to just put her back in her chair. By the end of our meal she was sitting in her chair, flailing her arms in the air, and screaming. We gingerly marched her right back upstairs from the kitchen at the Ronald. By the time we got up stairs she was violent. She was throwing things across the room and arms and legs were flying out in all directions. She kept slamming her head into things. It was clear. She was a danger to herself and anyone and anything that was in about a ten foot radius. After trying all else (and I mean everything) I finally crawled up on top of her and held her down. Her eyes were crazed and looked as if they were just rolling around in their sockets. Finally at about 8:00 PM she settled down and we finally got through to her (a little bit anyway). From then on she just lied in her bed. After giving her some time to recuperate we tried to comfort her but we could tell that she was still on the edge of lashing out. She fell asleep shortly thereafter.

This presents a huge conundrum. I have never been through anything quite like that in my life and I find myself questioning the reality of the situation. It seems like I always go through this when she has had those particularly tough days at the beginning of a treatment round but, this is also different. First, I don't want Sydney to go through this. I think stopping the Ativan will go along way towards curing that. But second and third are Graham and Ainsley. Unfortunately, they saw much of what transpired last night. Sydney's outbursts were so unpredictable it was not always possible to get them out of the room before something else transpired. There were times that both of them were frightened and scared by their sister and Graham is beginning to imitate many of her behaviors. It is a case of "monkey see, monkey do" but it is still confusing to the little tyke. He watches everything his big sister does and he looks up to her. It is natural for him to want to be just like her.

Am I at the end of my rope? No, it takes more than this to get me down. But, that does not mean that I know what to do. If I was made of money I would probably split up the family and send the others back home or, at the very least, get a hotel with two rooms. I know stopping the Ativan will help tremendously but we will still have the afternoon Dilaudad funk to contend with. That I think I can control. Oh, I know, wishful thinking. But that at least, seems to dissipate relatively quickly and we could have potentially 4 to 6 hours of sanity per day. I really don't know what I would do if this behavior continued. I don't know how to parent out of the situation and, to be honest, as crazed and psychotic as she seemed, I don't think there was any way out of it until the drugs wore off. I can tell you for sure though that I would never like to repeat the experience of last night again. Restraining your child to keep her from hurting herself is no pretty task and I would really just like to forget about it.

Nobody said that a purpose would always be fun.

4:24 AM 9/22/2005

Yesterday was a much better day. We dropped the Ativan from the mix and I am pleased to say that I can not remember a single uncontrolled psychotic outburst. We experienced a few Dilaudad moments but none were to the degree that we experienced the night before. She tolerated the pain fairly well. She only required a single half rescue dose. By lunch time we were finished and on our way back to the Ronald. We spent the next four hours cuddled up in bed. I don't know that she actually fell asleep during the afternoon hours but she was calm and complacent. In the evening we would make an attempt to eat out but at the last minute Sydney decided not to listen and began to pout. Fearful of a recurrence of the previous night's episode we put the stroller in reverse and elected to pick up some dinner at KFC. The remainder of the evening would be relatively calm and quiet. We all fell asleep by about 8:00 PM.

Graham continued to have outbursts the were eerily reminiscent of Sydney's episode. The funny thing about the boy is that he was never really mad or anything. I don't think he knows why Sydney was acing out or acting strange so he would just do it at random times. For him, I think it is just his way of saying "See I am a big boy, I can do it too!" He doesn't do it out of anger. It just seems to come from out of the blue. He can be sitting there playing with his cars happy as a clam and then the next moment just start flailing and yelling. He even has a smile on his face while he is doing it. It would almost be funny if we did not know the cause.
Well, today is another treatment day. We will make our best efforts to recreate the atmosphere of yesterday and just hope for the best.

All in all, just another day of purpose.

2:59 AM 11/23/2005

Now that was a good day of treatment. Although, now that I think about it, it did not start out that way. First off, yesterday morning the kids decided to wake up a little before 6:00 AM. Now, you may think that is not a big deal, but, when you only have a few scant hours to work, those morning hours become critical. Luckily, I did not have any emergencies and I was able to concentrate on playing with the kiddos. The problem with playing with the kiddos early in the morning is that it does not take long for them to become alert. The next thing you know you have a plethora of active and refreshed munchkins darting off in different directions. This is when the first hiccup of the day began. Lynley was in the shower. I was feeding Ainsley and trying to keep Graham from standing on the bed. You might think (as did I) that you could give your oldest a little creative freedom to roam the hotel room. The problem with that theory is the fact that Sydney is a little too independent for her own good. You see, while we are in New York and undergoing treatment, we tend to put Sydney back into a diaper. With all of the fluids and drugs she is on she seems to loose control when she is not paying attention. It appears to be a smart move to keep her in a diaper while she is actively receiving treatment or when she is sleeping. The problem with all of this is that she knows that she is a big girl and thus believes that since she can dress herself she should be able to take her diaper off as well. And that she did. The only problem with her theory is that she had apparently forgotten that it was also full of poo. So, as she undid the sticky tabs on her diaper and slung the used mess on the dresser, little balls of poo apparently flung themselves out across the floor. Oblivious to this little mishap she happily walked down the hall to check on Mommy in the shower. Graham, of course, detecting movement in the room, darted off behind her. The next thing I knew Sydney was asking Mommy to clean her feet. It took a second for us to realize that (a) she had poo on her feet and (b) there were little poo-lets all over the floor and (c) Graham was happily stomping his way through them. At this point, any normal parent might have given up, but Lynley and I, in pure disgust, carefully cleaned up our little poo monsters and cleaned the carpet. It was not a great start to the day. By the way, the new "environmentally friendly" cleaning products that they are stocking the Ronald rooms with might be great for the ozone but they suck at getting poo out of carpet. Nonetheless, with a little elbow grease we were able to completely resanitize the room.

The good news is that Sydney had a great treatment day. There was pain and there was a Dilaudad funk. But, all in all, she recovered well and we were able to go out in the evening for a very pleasant dinner at Dallas BBQ.

See, even though a day of purpose can get started off on the wrong foot, and the stuff can hit the fan (floor in our case) you can still have a great day of purpose.

4:10 AM 9/26/2005

Friday's treatment round went fairly well but by late afternoon Sydney was pale white and a fever was starting to raise its ugly head. By 7:00 PM she was lethargic and refusing to eat. Her temp was now 100.9. Ordinarily we would not be too concerned about a fever. Her immune system was recovered to the point that she is able to battle most bugs just like that of any other child. The only difference at this point is that she has a port and for that reason we still have to be relatively careful. Nonetheless, we were moreso bothered by the lethargy. It just isn't like Sydney and we were concerned. We decided to take her into the urgent care clinic to get her checked out. With the hoard of hoodlums that we now have under our parental auspices it became necessary for one of us to stay behind with Ainsley and Graham and the other to escort Sydney to MSKCC. After a thorough election process Sydney chose her mother to go with her.

By the time Sydney hit the street the fresh air must have rejuvenated her. As they made the 6 block trek Sydney continued to improve. By the time they had reached the doors of the urgent care clinic Sydney was singing full blast and serenading all of those that would listen. Once again, we had been trumped by the car with the air conditioning problem which refused to misbehave in front of the mechanic. Her fever had gone down, the color was back in her cheeks, and lethargy was more of antonym. Lynley hung her head in shame as she asked for urgent care for her now seemingly perfectly healthy child. Sydney entertained the doctors and nurses as they shot her up with antibiotic and then, at about 11:00 PM, they found themselves back home at the Ronald.

The weekend was busy. We would not see any further febrile episodes. We made visits to central park, Rockefeller Center, and Times Square with extra long hiat-i (hiatuses?) at the Disney Store and Toys R Us. All in all, it was a pretty good weekend.

Purpii sure can be tricky.

5:05 AM 9/27/2005

Wow, I slept in, and in New York too. Yesterday was an interesting day on many levels. Sydney's pain was far less than normal but it is really difficult to find the cause. First off, somehow she received a dose of Ativan. Apparently someone forgot to cross it off the list from last week. So, that could have very well helped reduce the amount of pain. Secondly, we had some pain management specialists there to entertain (I meant work with) Sydney. Now this wasn't your typical group of pain management specialists. This group did not use drugs. They used distraction and music to help with the pain. The group of three all sat in our room with Sydney. Some of the tactics they used seemed almost meditative while others were activities (dance almost) that were aimed at just distracting her from the treatment itself. They had all kinds of different musical instruments and Sydney really seemed to take a liking to them. In the end, Sydney only experienced roughly five minutes of pain at the end of her treatment and it appeared to me that it was about half of the usual intensity. She required no rescue doses. Now, was this medical voodoo? Did the Ativan stave off the pain? Is she going into HAMA? I don't know. There were too many variables to consider. But I can tell you that we will surely try it again. Regardless of the ultimate reason that her pain was less in both intensity and duration she seemed ecstatic to be with her new found friends and she truly seemed to be more relaxed. I will take her relief any way I can get it. Well, any other way than with Ativan.

So, what did the Ativan do? We really did not see any late effects, much like the first day she had it last week. By bed time she was more ornery than usual and was making a concerted effort to misbehave. I personally believe it was some of the Ativan that we were seeing but Lynley seemed to believe that is was just some typical 4 year old angst. We certainly did not see any violence. She was just disagreeable. But, again to me, she was disagreeable in such a way that it just did not seem normal. Regardless, it was manageable and we were all able to sleep peacefully.

Here is to hoping for another calm day of purpii.

9/28/2005

My diary entry was lost somewhere in the void of the internet this morning. Rest assured that everyone is fine and I will write again tomorrow.

Now, however, is purpii time.

4:02 AM 9/29/2005

The last two days for Sydney have been very good. Yesterday our dance therapists visited Sydney in treatment again and as a result she tolerated the 3F8's extremely well. The only strange occurrence was the absence of pain in her abdomen. Near the end of the treatment hour, however, she did have pain in her arm. Arm pain is not a common side effect. It can be seen in the back, on the legs, and even occasionally in the shoulders but the forearm certainly wasn't what we were expecting. We really don't have a good understanding of why she had arm pain. Could she have overextended herself with the dance therapists? I guess that is a possibility. Could the pain actually be radiating from elsewhere. That is possible too. The pain only existed in her left arm so the nurses checked her central line to make sure it was operating correctly. It appeared to be in perfect running order. The good news is that for the second time this week she went through treatment without the need of and Dilaudad rescue doses.

I was really disappointed that I lost my journal entry yesterday. Occasionally when I am writing I make little discoveries about myself and yesterday was certainly no exception. The problem is that I know that there is no way I could rewrite the entry from yesterday as well as I had written it in the first place. But, for me, and for Sydney I think it is something that needs to be remembered. So here goes a second stab.

By the end of the second week of treatment we are all tired and a little stir crazy. As much as we try and make this as relaxing of a "vacation" as we can, battling the side effects of Dilaudad, managing three kids in a single room at the Ronald, and dealing with the stress of the treatment itself eventually tears you down physically and emotionally. It is times like these when I am emotionally exhausted that I start digging for strength to make the next day as special or even wonderful as it can possibly be. It is this ability to dig deep down and to really realize that was a gift from this journey.

When you first step into the cancer world everything you have ever known is stripped from you. What you knew of a normal life no longer exists. There is no more control in our life and the choices we once made in life have no bearing in the now topsy turvy world. It is a feeling of emptiness. You are scared and unlike many other of life's challenges your ability to work the problem is no longer under your control. Your sanity, your comfort is at the discretion of this beast.

Although it may feel like all of those things mentioned above, you do have power. What you don't necessarily realize in those moments (or months) of sheer horror is that you have a lot of control. Your options and your choices, however, are so primitive and so basic that you may not even realize that you have them. These are decisions that I made everyday BC (before cancer) without ever knowing that I had made them. They were automatic and perhaps even a preprogrammed genetic decision made before I was even aware. It was a gift from Sydney that I was able to realize that although I did not realize it I still had the power to choose. I have the choice of how I am going to face every day and I have the power to choose how I am going to affect others - most importantly my family.

It really is that simple. I could choose to be sad about Sydney's diagnosis. I could blame myself. I could blame others. With all that is nasty and evil about the fate that was handed Sydney it would not be such a stretch to dwell in it and to surround myself by it. I could be hurt and angry. I could be bitter. I could face each day with the same distaste that our family was dealt.

OR

I could CHOOSE to surround my family with love and hope. I could comfort them. I could be a source of their strength. I could make everyday a better and more special day than the day before. I could choose to take advantage of every moment with out it being spoiled by hurt or anger. I can choose to revel in small successes and to hurdle over major pitfalls. The point is that it is my choice and that choice is ultimately what dictates how my family feels as we go through this journey. That is power.

Unfortunately, in the hustle and bustle of today's world, I often forget that I have this power. With schedules, and work and appointments and kids and bills and .......... this choice is often made without a conscious decision. Some days I wake up in a good mood and others I wake up in a bad mood but I can tell you that whenever I forget to make this basic choice I am doing both myself and my family a disservice. It is my power and only I can control it. It is my power and my perspective that can make this journey good or bad. It is my choice.

Purpose is a choice, nothing more and nothing less.

3:39 AM 9/30/2005

Our last day of treatment this round has arrived. We have proved without a shadow of a doubt that it is possible to bring your entire family to New York for 3F8s and still survive with a modicum of sanity left. I am shocked at how quickly this trip flew by. It seems like it was just yesterday that we arrived.

Yesterday was a pretty good treatment day for Sydney. It sounds bad but I am really happy to report that Sydney had the requisite amount of belly pain. She required one half dose of Dilaudad and in every sense it was a typical day. I find myself relieved. It is much easier to digest the expected. Even after almost 2 and a half years of Sydney's treatment I still find myself full of half breath whenever we steer away from the norm. You would think that by now I would be more adept.

People say this journey is like a roller coaster ride. I think that is partially correct but it really misses its unexpected nature. It is a roller coaster though. The good news is that they give you a map of the roller coaster ride. The bad news is that once the ride starts they turn all of the lights off. You remember from the map that there is a sharp right turn on the horizon but without the light the anticipation is what gets the best of you. When the turn finally arrives you feel a sense of relief. 3F8s are much the same way. You expect a certain sequence of events and when one of those events does not occur or occurs but not as expected you just want to stop the ride and turn on the lights back on so that you can get your bearings again. I know, I know, expect the unexpected. It is a lot easier to say than it is to live. Regardless, I was glad to see my little roller coaster responding as expected.

Thank you New York for a wonderful stay but it sure will be nice to get home.

My purpii need their space.

4:58 AM 10/10/2005

Friday's treatment was perfectly typical. We had the requisite amount of belly pain and a half dose of Dilaudad paved the way to a smooth and comfortable recovery. By noon we were back at the Ronald in a race to finish packing, get the kids fed, and get to the airport. Believe it or not, we got to the gate without too much drama. It is fun, however, to get three kiddos, a double stroller, two back packs, and two computers through security. The looks on the peoples faces are always too funny. When you have three little ones at an airport you become a second class citizen in people's eyes. Everyone is in such a hurry.

When we got to the gate to check in the stroller they decided to move our seats around. Apparently there aren't enough oxygen masks to go around for a family of five in a single row. It was decided that my seat would be moved and Graham would sit on my lap. Oh, this was going to be fun.

We boarded the plane which was filled to capacity. The looks on the businessman's faces as they made their way down the isle were priceless. The guy that ended up sitting next to Graham and I was full of smart remarks about how unenjoyable his flight was going to be. He had a pretentious air about him and refused to acknowledge our presence. He was obviously too important to sit beside this. Just for that, as soon as the seatbelt signs came on and we pulled away from the gate, Graham decided an appropriate response would be to fill his diaper - and not with the good stuff. We would wait on the tarmac for thirty minutes and it would be another before the seat belt signs would turn off. My son was ripe but in between the tears in my eyes I could feel a certain sense of satisfaction. I know Graham did. I then asked the men to move so that we could go to the bathroom. I have never seen grown businessmen move so quickly.

The rest of the flight was uneventful. My kiddos are pretty experienced fliers and they behaved well.

We are still recovering but we are so glad to be home. Adjusting to the amount of space that we have is always a little bit of a shock. There is something nice about living together in a single room. Everyone is contained. We spent the entire weekend chasing our kiddos from one room to the next. We are ready to get back to work and experience a little of the adult world again.

Our purpii are safe, home, and happy.

6:58 AM 6/4/2005

Yes, so I am a little late today. After we put the kiddos to bed last night I went out to watch Monday night football with the boys. I honestly can not remember the last time I did that. It has been literally years. Sydney had a great day a school. She was incredibly happy to be back with al of her friends and teachers. She has just about fully recovered from her week of treatment. The color is coming back in her cheeks and the bruises from her Dilaudad and Ativan self abuse and clumsiness seem to be fading away. Graham is recovering too. He was so wired that it has taken him several days to begin to relax. He is sleeping much longer and taking advantage of almost 4 hour afternoon naps. Ainsley seems to be completely undaunted.

Well that is a quick update. I will behave myself tonight and have plenty of time to write tomorrow.

Until then, my purpii are reacclimating.

5:51 AM 10/05/2004

What a great night of sleep. I am back in perfect running order. Sydney woke up yesterday morning with a large bite on her leg - actually two of them. We were somewhat concerned because at that point one of the warm, red raised areas which appeared along the top of her left calf was about 1.5 x 2 inches. The other was located just above her knee and was much smaller - only about a half inch in diameter. The night before I had taken Graham and Sydney for a walk around the neighborhood. Okay, I admit it. I was shamelessly trying to wear out my two overactive twerps before bedtime. However, once we rounded the block and began walking towards the next corner Sydney said she walked through a spider web. She did a little "ooky" dance and asked me to check her for spiders. I did as told and did not spot hide nor hair of a spider or web. At the time I just assumed that she was overreacting. She asked that we walk back the way that we came and Graham and I obliged. I did notice on the way home, as I was talking to our neighbors at the corner who had brought out some nutrigrain bars for the kids, that she was itching like crazy. I really did not think much of it at the time. I just assumed that she was still reeling from the experience and that the itching was more related to the thought of bugs being on her. Eventually we made our way back home and I noticed the spots on her legs but, at that point, they really just looked red from all of the finger scratching. As the evening went on, she would continue to complain about the itchiness. Eventually we put some hydrocortisone cream on her legs and put her to bed.

There, now we are caught up. In the morning we made the kids some breakfast and prepared Sydney for school. Lynley and I were still debating the need to take Sydney to the doctor but eventually one of us realized that Ainsley had an appointment for her four month checkup in the early afternoon. This was perfect timing. We could get a twofer. At about 10:00 AM I received a call from the school. Sydney had continued to complain about the itchiness and the teachers had noticed the areas on her leg. The were calling to make us aware of her leg. She had described the area on Sydney's leg as being a little larger than I had remembered but we were only a couple of hours away from the doctors appointment so I thanked her for the call and told her that we were waiting on a call from the doctor's office to see when we could bring her in. I felt guilty that I had forgotten to tell them about it but I was proud and relieved to see how proactive and observant her teachers were.

By the time we had reached Dr. Debbie's office the spot had grown. It was now 2.5 x 3.5 inches and just as warm and red as ever. Dr. Debbie checked Ainsley over and gave her the seal of approval. She was growing and, aside from a little cradle cap, she was perfect. Dr. Debbie then turned her attention to me. I got in trouble for not accurately depicting her last diagnosis of Ainsley in Dad's diary. I tell you, doctors really don't like it when you put their professional reputations on the line by publicly misstating them in a diary such as this. Apparently she felt that my entry on September 7th about Ainsley's rash was misleading. She told me that the rash was probably from the Vitamin E lotion. I thought that was what I had implied. You see Dr. Debbie always gives us all of the facts. She tells us the diagnosis but she also thoroughly investigates all possibilities. Because of her very skilled and protective nature, she also told me other signs to watch out for in case it was a virus which the rash showed some signs of. But still, it was most likely not a virus. I probably did not make that as clear as I should have. It is hard to encapsulate a 30 minute examination and discussion into a few short sentences. Boy, you would think this would keep me from writing about her in my diary. You might think I would be more careful about what I say. You would think this would be another one of those great learning experiences. Nope, not my style. Dr. Debbie is stuck with me for better or worse. When we have been through this much together with Sydney it is as if we were related. Scary thought, huh, Dr. Debbie.

Anyway, all laughs and misrepresentations aside, Dr. Debbie (remember she is a personal friend, the absolute "bestest" pediatrician in the whole wide world, and I don't have anything to sue for) gave Sydney a thorough examination. She drew a circle around the largest spot on Sydney's leg and told us to watch it. There was clearly an infection and it was most likely caused by a bug bite. She prescribed some antibiotics. We were told to watch it closely. She said it would probably get worse before it got better and that it could grow a quarter to half an inch in the 24 hours before the antibiotic kicked in. We were also told to watch for red streaks protruding from the site and for the development of any necrotic tissue in the center. She told us not to be surprised if we saw some low grade fevers.

By bed time the site had not grown although the center seemed to have a little discoloration. She received her first dose of antibiotic at about 7:00 PM. Lynley and I are both anxious to see Sydney this morning. We are hoping for no major changes or, better yet, some improvement but realize that is probably not going to be the case. It will be a day of careful watching.

My purpose sure seems busy.

5:42 AM 10/6/2005

I am happy to report that the spots on Sydney's leg are shrinking quickly. They are now about half of their original size and they are fading in color. She has stopped complaining of the itchiness and seems to be making a full recovery.

Yesterday Graham went back to school. He was somewhat clingy but seemed to have a very good day. By the time I got back home from picking him up at school he was already fast asleep. He would sleep the remainder of the afternoon.

Ainsley seems to be doing well too. She has been a little sleepless and her appetite has been down since receiving her 4 vaccine shots the day before. I imagine we will start to see that improve over the next few days.

Last night we went out with the Robertson's for dinner. It was Aunt Kori's birthday. We ate at the original and all of the kids were fantastic. Most of the kiddos were tied down to their chairs but even the ones that weren't were really good. We had a great time and were happy to spend her birthday dinner with her, even if it was a little belated.

All in all, it was a typical day. Lynley and I are still trying to catch up at work but things seem to be calming down a bit.

If my purpose was fiction no one would believe it.

5:49 AM 10/7/2005

Thankfully I really don't have anything exciting to report today. It is really strange not to have Sydney on a slew of meds. We have finished our last round of Accutane so the only thing that Sydney is taking is the antibiotic for her skin infection which, by the way, continues to improve. She did complain of it itching last night but it was probably more likely a tactic to keep from going to bed.

Today, Graham will be going back to school. I really like this opportunity for him. At school Graham gets to be just Graham, not Sydney's little brother. He gets to be his own individual with his own friends. I imagine it will be hard for him to grow up in his sister's shadow and this is an excellent opportunity to be who he is. So much of his life has been focused around Sydney. I think it has been out of necessity or coincidence but I am so happy that we found this outlet for him. Perhaps over the years to come the focus on Sydney's needs will begin to decline and the little Dudely will feel the focus that he deserves.

It is funny, whenever our family goes out in public and we see someone we know (or someone that knows of Sydney) the conversation is always directed towards Sydney. The smiles, the laughs, and the attention are always focused on her. But when Sydney is not around and people aren't focused on our newest member, Graham gets the attention and when he gets that opportunity he just beams with delight. I never want him to feel less than his sisters. He is my only son and although I love my children each in their own way Dudely will always be special - just as Sydney and Ainsley are.

Well I had better be off. I have a slew of kiddos to get ready this morning.

My purpose awaits.

4:55 AM 10/10/2005

In the annals of good weekends I don't think this one would have qualified. It wasn't that we were not all together and it wasn't that we all didn't relax. This was just one of those really bothersome neuroblastoma weekends. First off, all of the kiddos seem to be battling something. That is the good news. If Sydney was the only one that was sick I would be really worried. So, to make a normal story appropriately scary in the neuroblastoma world here is what we have.

Sydney continues to be on antibiotics for the skin infection that she had (yes, I said had, it appears to be gone) last week. His will be day five since she started antibiotics. She has continued to complain of pain in her left leg. The moments of complaint are sporadic and seem to coincidently occur around bed time. She has told her mother that it hurts on the inside of her left thigh. Lynley has thoroughly massaged this leg and reports that the muscle on that side is pretty tight, especially when compared to the other leg. The odd thing about this is that the times that Sydney has reported leg pain to me it has been in her shin. So, there you have it. This is the first strange symptom.

Next, Sydney has complained of a sore throat. We have been able to detect some slight redness but have not seen anything resembling strep as of yet. The pain is not constant and she only seems to mention it sporadically throughout the day. This is also accompanied by the snots which have flowed clear and voluminously, especially with the help of some decongestant.

Finally, the last symptom and the one I hate - fevers. Last night she had a low grade fever of 100.8. Over the weekend she felt warm on occasion but it could generally be blamed on something else, like the fact that she was sweaty from being outside. To be honest we never really worried because all of the kids seemed to feel warm over the weekend and whenever we checked one of the kiddos their temperatures were just fine. We just figured our parental cheek thermometers must have been miscalibrated. Anyway, we were really shocked to find a real temperature last night and it set up some alarms. Had we missed other fevers during the weekend?

On the other hands we had Graham and Ainsley. Graham has been pretty emotional over the weekend. He has a cough and seems to just be out of sorts. He even treated us to some projectile vomiting last night at dinner. Yum! Ainsley has been the one that has stayed closest to healthy but she too seems to be a little out of sorts with episodes of what feels like a temperature and a infrequent cough.

So, why does this bother me? Well, it bothers me because (a) this is October and I have decided that I don't like October very much after last year's episode and (b) this is the way the whole dang thing got started in the first place - low grade fevers, leg pain, symptoms that never seemed to improve with antibiotics. Yeah, I know in real normal kid world this is nothing. Heck, I certainly am not worried about Graham. Hey, he is just a little under the weather. For him these are not symptoms of cancer until proven otherwise. But, for Sydney, well, they have been proven and it is scary and I won't rest until I have some answers.

Purpose is in overdrive.

4:34 AM 10/11/2005

Well, there is nothing new to report. We took Sydney and the rest of the brood down to the clinic yesterday afternoon. Sydney really was not showing any signs of sickness. She had a cough and a stuffy nose but the rest of her seemed fine. Of course she was running up and down the halls so it was pretty hard to think that she was really sick. Candy, the nurse practitioner, gave her a thorough once over. Sydney's throat was fine. Her ears were clear. Her heart was fine. Her belly was soft. She was not in any pain. Humph, Nothing. I was hoping for some type of infection. A good old upper respiratory infection would have been great, even an ear infection would have been passable. But nope, nothing. The current belief is that she has some type of sinus infection. This would explain the stuffiness, the coughing, the headaches and the fever. It could even explain the sore throat if she is experiencing some kind of drainage. What it does not explain is the left leg pain which, as of now, speculation assumes is related to either the bug bite, the old skin infection, high levels of activity, or just the fact that she does not want to go to bed at night. As you can see, there really aren't any solid answers. So, for now, we just kind of wait. We hope the antibiotics clean up the remnants of the sinus infection and, with that, the symptoms simply disappear. We will also be more clever about her leg pain and see if we can get her to admit that it is real or that she just doesn't want to go to bed.

The great news was that other than a headache (in the center of her forehead - consistent with a sinus infection) that she experienced on the way home from the clinic, she had no other complaints yesterday. No fevers, no phantom leg pain, just some routine sniffles and coughing. We will watch her closely and just try and stay in front of this one.

My purpose is still not at ease.

5:24 AM 10/12/2005

Yippee, two days without phantom leg pain. We also have not seen any further fevers or headaches. I can not tell you how good that feels. Sydney still continues to cough and just before bed she started to complain that her throat was hurting. However, this "just before bed" thing is about to drive me crazy. You would think I was capable of outwitting a 4 year old but I am not. I am going to go ahead and blame this one on the fact that my mind powers are too powerful and that must be the reason I can't figure out if we are dealing with real or fake symptoms. I know that there is some element of fakery here but I just can not prove it and my fear is that it trying to get her to admit it with my all powerful powers of persuasion that I will just talk her into not having pain. It is really a double edged sword. For example, Sydney can go to bed and, like clockwork, immediately call me back into her bed room to complain of some ailment. It usually goes something like "Daddy, um daddy, my leg hurts." At this point I have to figure out whether this is an attempt to stay up, to sleep with Mommy and Daddy, or whether this actually is real authentic leg pain. We generally start with the poke or prod method. We identify the spot that hurts (if we can) and then feel around for anything abnormal. We usually disguise this as a massage. We are looking for some type of reaction or a miraculous cure. During this process she usually asks for one of two things, grape Tylenol tablets or to sleep with us. On occasion I will tell her that the type of pain that she is having won't be fixed with Tylenol or doesn't warrant a trip to our bed. I will tell her that if the pain was in her other leg, or in her shoulder or etc. then that would warrant a grape Tylenol or a trip to our bed. I then tell her that this type of pain will certainly get better and that she will be okay. I kiss her goodnight and then slip back out of the bedroom. What I am looking for is her to ask me to come back in. I want her to tell me that her shoulder now hurts. Actually I would love her to tell me that she did not have any pain at all and that she was just faking it to get some grape Tylenol or a trip to our bed but, lets be real, that is never going to happen. On occasion, however, she will call me back into the room to tell me that her shoulder is hurting. This gives me a good indication of what is going on but, on other nights and the majority of the time, I just don't know. I don't know whether the pain is real or fake and then I spend the rest of the night worrying about it. There must be a simple solution but for the life of me I just don't know what it is. I could always come up with some super pain elixir placebo that tastes awful but then I would worry that the time she really did have pain that she would not tell me because she wouldn't want the nasty fake elixir that I concocted. I could do a lot of things but all have the byproduct of potentially keeping from her telling me about real pain. I need to find a way to identify real pain on a pain scale. I need to see if I can identify the source. I need to know. The problem is that truth in the mind of a four year old is somewhat elusive. I have got to be smarter that a four year old, don't I?

Purpii can be sneakily deceiving.

5:50 AM 10/13/2005

My house sounds like a cough-a-torium. It is official. All of the kiddos are battling this bug and all are on antibiotics. Med time around the house looks like we have started our own pharmacy so, by all means, if you have sick kiddos bring them on over. There is a good chance we will have the stock to fix what ails them. It is actually pretty funny having three kids all sick with the same bug. They all have a different way of handling their sickness. For starters, all have a pretty severe cough and runny nose. The only difference is that Graham has decided to throw diarrhea into the mix. Sydney acts like there is nothing wrong with her. I guess with all that she has been through a little bug really isn't that much to deal with. She still runs around the house like a chicken with her head cut off and this hasn't slowed her down one bit. Graham, however, has had his world fall apart. He isn't eating. He seems depressed and just about anything rattles the boy and sends him into a series of cries. He is not only the most sensitive natured of our kids but he is also the most sensitive to this bug. He would much rather just be held and coddled. Ainsley, on the other hand is just plain pissed off. It isn't as though she is crying or incorrigible. She is just mad. She spends much of her day with a scowl as if to say "Why was a born into this mutant, sick, chaotic family. All I want to do is just sit here and hang out. My heathen brother and sister won't leave me alone and keep spreading there nasty germs all over the place. I must have done something really bad in my last life. Go away and leave me alone!" I know, it is hard to predict what a 4 month old might be saying but I am pretty sure I hit this one right on the nose. She is definitely the most opinionated of the group and when someone is bugging her or acting inappropriately she is the first to send you that look of pure disgust. Ainsley is going to be a fun one when she grows up. I feel for her future husband. It won't take her long to have him cowering in submission. I know, I have been there buddy.

Well, I have got to run. It will be a full day of battling bugs with my purpose gun.

5:11 AM 10/14/2005

Hello from sick central! Well, not much has changed in the last 24 hours. Well, I guess that isn't completely true. Lynley got mad at me because she thought I misrepresented Ainsley's views. She was far more prone to think of Ainsley as just the most sweet laid back angel of all of our children. She said that Ainsley never scowls. Until, that is, at dinner time. We were all sitting at the dinner table having a nice Italian meal. Graham was crying in his hoarse little voice because he did not want to eat. Sydney was yelling at Graham telling him to eat and be a good boy (yeah, real helpful that one). And then it happened. Lynley had not seen it before but Ainsley crooked her head over to meet my eyes and shot me that look. Even Lynley saw it and there was no denying what was going on in Ainsley's little mastermind. She was clearly telling me to get up off of my butt and to shut those little brats up. Her eyes were piercing and there was no mistaking her. Lynley and I just had to laugh.

Earlier in the day I took Sydney in for her HAMA draw and check up. We had a pretty good time. The clinic was absolutely packed. After quite a bit of waiting, I took Sydney through the usual paces and then we were blessed by an appearance by Dr. Eames. She checked her lungs, ears, nose and throat and then checked the progress of the almost completely healed skin infection on her leg. Sydney's cough was prominent and Dr. Eames indicated that we were probably in the midst of the viral cough that is spreading like wildfire. The good news was that Sydney has fairing pretty well. The bad news was that it was prone to stay around for at least 2 to 3 weeks and as many as 4 to 5. We were told to continue to treat the symptoms and to watch her closely to make sure it did not turn into an ear infection or something more sinister. All in all it was a pretty good check up. After some more pleasantries we were on our way home.

About 30 minutes after we arrived home Sydney began to complain that her hinny hurt. In Sydneyan this generally means the front of her back and not her tushy. After a thorough inspection by Lynley a yeast infection was confirmed. Great, just great! What an idiot Dad I was going to look like calling back to the clinic 45 minutes after we had just left to report another problem. I could just hear it now. "How typical for a Dad to miss a baby girls yeast infection!" I was letting down fathers everywhere. I had let down the team. I still maintain that Sydney had not complained about any pain until after the appointment but,oh well, I sucked it up and made the call. After a return call the order of the day was to treat it over the counter and other than the imagined whisperings of all of those people talking about my negligence behind by back we were quickly working the problem. Sydney never complained again.

Well, I have got to run. Today we are out of a nanny and it looks like I will be playing the part of Mr. Mom, eagerly yielding my tube of Lotrimin.

Yep, it's purpose.

5:55 AM 10/17/2005

It was a loud weekend in the Dungan household. Everyone is still under the weather. Sydney, however, is still undaunted. Her cough is prominent and her nose is full of sniffles but she just keeps moving like the energizer bunny. She even spent the night at DeeDee's new house on Saturday night and all signs show that they had a spectacular time. Graham, however, still believes that he is on his deathbed. I know, I know, I am going to have to listen to tales of how men aren't as "manly" about handling sickness. Trust me, I have already listened to it from Lynley for a week. But, just for the record, I am going to maintain that Graham is just sicker than the others. Regardless, his days are filled with many tears. He has a constant cough and low grade fever and the little Grahamster has lost all ability to cope. He is needy and breaks down the moment something does not go his way. Ainsley has taken a turn for the worse. It had seemed that she was skating by with only minor effects from this virus but the last two days have brought more coughs and a significant amount of drainage. It is hard for her to eat and she must constantly stop to take a breath while feeding. Her sleep is also compromised. We have her sleeping in a somewhat upright position in an effort to get the stuff to drain but she still wakes every so often to cough and grasp a breath.

Well those are the highlights. We are still waiting for some improvement but understand that this could take weeks. It will be another busy week for nurses, Mark and Lynley.

Still chasing bugs with our purpose guns.

5:44 AM 10/18/2005

Wow, from sick to sicker. Ainsley has really taken a downturn in the last few days. Yesterday afternoon Lynley took Ainsley and Sydney to see Dr. Debbie. Sydney now has a confirmed ear infection. We have put her back on Omnicef and it looks as though we may have caught it early. Either we caught it early or she is a tougher cookie than I thought. She is still running a million miles an hour even though she is coughing between each step and tugging her ear between every other. Ainsley, however, is not fairing so well. Her breathing is becoming more labored and it has moved into her lungs. With her only being four months old she is far more susceptible to whatever this may be and it is definitely compromising her more than the others. She is now on a new antibiotic (Omnicef), some steroids, and we are giving her breathing treatments with Albuterol every 2 to 3 hours (yes, throughout the night too.) The first treatments seemed to help but the one we did early this morning did not seem to be as useful. Lynley and I have been debating whether or not to give her another treatment before the next scheduled one. Today Lynley will be taking Ainsley to Cook's to get Ainsley tested for RSV (Respiratory Syncytial Virus). At this point we are still speculating that this is RSV but a test is the only way we will know for sure. Respiratory syncytial virus is the most common cause of bronchiolitis and pneumonia among infants and children under 1 year of age. Illness begins most frequently with fever, runny nose, cough, and sometimes wheezing (Sound familiar?). During their first RSV infection, between 25% and 40% of infants and young children have signs or symptoms of bronchiolitis or pneumonia, and 0.5% to 2% require hospitalization. Most children recover from illness in 8 to 15 days. The majority of children hospitalized for RSV infection are under 6 months of age. RSV also causes repeated infections throughout life, usually associated with moderate-to-severe cold-like symptoms; however, severe lower respiratory tract disease may occur at any age, especially among the elderly or among those with compromised cardiac, pulmonary, or immune systems. Well, enough book learning. It is time to care for my little sickies.

It looks like a need some higher caliber ammo for my purpose gun.

5:43 AM 10/19/2005

Boy, you forget to mention one chincy ear infection and you would not believe the rash of hate mail that you might receive from one unnamed pediatrician. So there you have it. I forgot to mention that Ainsley also has an ear infection and that is the reason that she too is on antibiotics. No, she isn't on antibiotics for RSV as that would not be prudent. She is on antibiotics for the secondary ear infection as treating RSV, a virus, with antibiotics would be poor medical judgment, could promote bacterial resistance and have the potential to cause serious side effects in a child who did not need the medicine. And, of course, we all know that Dr. Debbie would never do something like that because, by definition, she is the bestest pediatrician ever. Because of her outstanding reputation and natural gift of medical prowess I had just assumed that everyone out there in Dad's Diary Land would have certainly understood that she was treating Ainsley with antibiotics for a secondary infection. But I guess, assumptions aside, I should also point out that the steroids are being used to reduce inflammation. Dr. Debbie is not trying to bulk her up to become a future Olympic athlete as that too would indicate a serious lapse of medical judgment. Jeez, medical savants can be annoying.

Anyway, RSV has been confirmed. The Dungan five are now a contaminated mess of sickies. Don't come near us as we will certainly spew viral yuckiness to anyone that comes near (not that the entire world less a few kids under the age of two haven't already been exposed) It appears that we are responsible for creating this year's outbreak of RSV. In short, we have quarantined ourselves for the protection of society. We have called the CDC to come put a bubble around our house and if you see people in white jackets come visit us you now know it is not to take me to the loony bin - although, after this entry, that might be the most prudent step.

I need a purpose fumigator.

5:46 AM 10/20/2005

For better or worse there isn't a lot to report today. The good news is that I did not receive any more nastygrams regarding my misrepresentation of medical facts. Although the unnamed doctor did comment on the fact that she felt that two pleasantly written emails did not constitute a rash of hate mail. Perhaps, she is right about that too but, then again, it really is all perspective isn't it. Who do you believe - the talented pediatrician with her own successful practice or the smart ass daddy with three sick kiddos and one with cancer?

I really wish I could say that everyone was on the upswing but it would be a lie. Status quo seems acceptable at this point. There really wasn't any change in Sydney or Ainsley although Graham seemed to be a little more chipper. Lynley and I are just more tired. I think we have both been infected by the little sickies but luckily, in adults, the sickness is pretty bearable and more benign. Of course, I would like to point out that this may not be the case for the elderly or those who are immunosuppressed. (How's that Dr. Debbie?)

Well, I have to run. I am busily putting together all of my documentation to fight the Tarrant Appraisal Board on my land valuation today. I really believe we have an excellent case and it could easily mean a 3 or 4 thousand dollar savings to our family. That would certainly help us out.

Today I have a multi-purpose gun.

5:46 AM 10/21/2005

Status quo. Sydney still shows no signs of slowing down. Her cough seems to be more infrequent but it is still prominent. Graham's spirits are continuing to improve yet a wheeze is present in his lungs. Ainsley, on the other hand, seems no better or worse. She is now on her fifth day of steroids and other than being slightly more aggressive and easily agitated we really have not seen much improvement. No change is a far better alternative than a change for the worse. I am content to wait this one out.

I am also happy to announce that I successfully negotiated the Tarrant Appraisal Board's land valuation of my house down by $44,800. They had raised the value of our house by 9.9999% (law states you can only raise a house value by 10% per year) every year since we moved into this house. Although that could be construed as realistic in our neighborhood I was happy to be so successful. I did not get everything that I wanted but I was close. For some reason they threw out many of the homes I was using in my comparative market analysis because the sales of the homes were too recent. Can you believe that? We were arguing about the current market value of my house and some of my comparisons were to recent. Well, to make a long story short the housing market has taken a downturn recently and since they threw out my most recent sales data it hurt my argument a little. Never the less I will just fight them again next year using this years sales figures. I learned a lot in the process and have found out that there are definite ways to win. There is a fallacy (actually more than one) in there valuation system and once you understand that a loophole can almost always be found. Anyway, it was fun and I can't wait to do it again.

Well, once again, I am off. I have got a full day of purpii and a busy weekend ahead.

5:46 AM 10/24/2006

We need to divide and conquer. I don't know what is up with my kids. I love them but yikes sometimes I have the feeling that I brought them into this world and I can take them out. On their own I have some of the best kiddos in the world. Each have their own outstanding qualities and little quirks. Individually I could want for nothing else in the world. But together - whoa together - I would really like a trade in. Hold on, that is not altogether true. Ainsley is fine alone or in groups. She is the "Steady Eddy". Mix her up with Graham or Sydney and I still have a pretty impressive brethren. Pretty much any combination of my family will work - except one. If you take one part Sydney and one part Graham and mix them together you create the most lethal caustic mess of misbehavior that you could ever imagine. Our house will go from complete silence, calm and peace to the loudest chaotic version of "Lord of the Flies" that you could ever imagine. I don't know what is up with the two. By themselves they are well-behaved, polite, and they listen but together all of that is thrown out the window. All of a sudden neither of them will listen to each other much less their parents. What's funny is that they don't really fight with each other a lot. At least not more than I would expect from normal siblings of their age. They just decide that when they are together that all rules are out the window. A switch is flipped and all of a sudden they begin to do all of the things that they know they are not supposed to do. Generally they start with a good run around the house. The volume level of the screams and laughter are no less than that of a rock concert. Once we put a stop to that nonsense (and the breaking of two rules - running and screaming in the house) they usually head for the kitchen cabinets and begin strewing out cups and plastic bowls and food and anything they can get there grubby little hands on. This is usually where the first fight ensues. Somebody is always trying to close a drawer while the other one is trying to open it. If this behavior is not stopped there will be injuries and, at this point, they still will not be caused by us. But the point is there is more screaming and yelling. After the scolding I think they realize that together one parent is still capable of keeping an eye on them so, very cleverly, they decide to go in opposite directions. They are smart ones they are. They realize that at opposite sides of the house there is no way for the parent in charge to keep an eye on the both of them so as Lynley or I run from one end of the house and back again they use there alone time to be as destructive as possible. You will find Graham in the playroom pulling every toy bucket in the playroom off the shelves and dumping them on the floor. On the opposite side of the house you will find Sydney standing on a chair trying to get something out of the tallest cabinet she can find (another no-no). At some point a parent just has to scream. We don't and it is always handled calmly but while we are disciplining one of them the other's cries from doing something stupid are always close behind. The other funny thing about them together is that they are more prone to talk back and to not listen. Quite often in these scenarios you will have full out explosive arguments with the little heathens. They would never do this while alone. Regardless no matter what we try, these episodes always end in a string of stints in the naughty chair and the chaos will not stop until we have them both tied down to either a high chair (for snacks) or a car seat (for a ride).

There is a power struggle in my house and at least we parents are together.

However, we are losing.

Nothing a good dose of purpose won't cure.

Isn't life grand.

5:47 AM 10/25/2005

In the words of my loving wife, What in the "H - E - double hockey sticks" was that about? At 2:00 AM last night Sydney started crying. The first thoughts that always come to mind are "Please don't be leg pain. Don't be anything bad." I rushed in to find Sydney face down over her pillow throwing up. She was crying and wasn't calming down. There wasn't a lot and I quickly ran to the other room to get some hand towels to clean her and the bed up. Within minutes the room was fresh and clean with a new pillow case. The only thing that lingered was that ever so pleasant faint aroma of fresh vomit. Sydney then regained her composure and fell back to sleep.

The good news about this is that I don't remember nausea and vomiting being a common side effect of neuroblastoma. Oh sure, it is a side effect of much of the treatment but not really of the disease itself. I still don't like Sydney waking up in the middle of the night with any type of ailment. It still brings back too many memories of how these chapters in our lives began. It always makes me nervous and after the episodes I always find myself lying awake staring at the ceiling above my bed whispering under my breath "Please God not again. Don't let it be that."

After several hours I usually calm down. Lynley and I talk and cooler heads prevail. This could be due to the soup we had for dinner or any myriad of things. This could be the elusive but effective vomit virus. Wouldn't that be great timing? Just after we finally hit the road to recover on RSV we slip under the grasp of the vomit virus. Yuck!

Anyway I don't know what to hope for. I am still not sane enough to except the fact that this is not disease related even though I clearly no better. If she never vomits again I will be worried. If she vomits for the rest of the day I will be worried. This disease just has a funny way of taking hold of your mind. I guess I will just hope that this was something that she ate. That seems safe enough.

We sure have had a lot of scares lately (half of which I probably never even mentioned in my diary) and it will be another couple of months before we see a scan again. I think I will talk to them about installing a neuroblastoma dipstick during her next round of marrows.

It is a roller coaster and all of the spinning and turning does something to your mind.

I will stick to my purpii. That will make it all better.

5:18 AM 10/26/2005

Sydney had no further episodes and the rest of the day went as planned. Once again, not entirely true. Everything went as planned until dinner time. First off, I need to provide a little background. My son, you know, the big grunting he-man, well, he only eats meat and potatoes. This is nothing new. The little twerp has always turned up his nose to veggies and anything mildly healthy. Give him a steak, a hot dog, a burger, a slab of bologna and the boy will be asking for more before you have a chance to make it back to your seat at the dinner table. Yep, my big boy is all about the protein. Well, that is, until he came down with his version of what he believed was a nearly fatal case of RSV. The Dudely pretty much stopped eating. As he is recovering from his harrowing experience we are trying to get his appetite back to normal. We are serving foods that he likes but also giving him the opportunity to eat healthier foods. Now that we have to start over in convincing him to eat we figure we might as well teach him to eat healthy this time.

Well, we sat down at the dinner table. We carved up a slab of meatloaf, a few veggies, some cottage cheese, and a couple of grapes and served them up to the boy. As might be expected, he devoured the beef and left everything else on his plate completely unscathed. The veggies, cottage cheese, and grapes weren't even moved in the mad melee as he scarfed down his meat. They were pristine, completely untouched, and still had the five star presentation that my wife always so kindly provides us.

Lynley and I decided that it was time for an intervention. The boy was going to eat something healthy. As much as we tried to convince and cajole him he would continue his "eating" stand off. As everyone else at the dinner table finished their respective dinners, Graham continued to refuse to eat. As we all left the dinner table, he continued to refuse to eat. As Mom, and Sydney, and baby sister made their ways upstairs to get ready for bed the boy refused to eat. We were like rams, head to head, and in the midst of battle. The boy was not going to get up until he ate at least one healthy food. I concentrated on the grapes. I told the boy that all he had to do was eat a single grape and he could get down. He screamed. The game was on.

I was fighting for the dignity of parents everywhere. I was going to win. That little turd was not going to get out of that high chair until he ate at least one of something healthy. He would continue to cry, to scream, to demand that I get him out of the chair but I had resolve. I was kind but firm. I was going to win this battle. I finally decided that I was not going to pay attention to him if he was just going to scream. I turned on the TV and watched a home improvement show. Over the next 20 minutes we would gradually calm down but he was still taking a firm stand.

At the next commercial I turned around.

He was happily munching on a few grapes.

He had no clue that he was fulfilling my prophecy and when I pointed out what a good boy he was for eating his dinner and that he could get out of the chair he had a look of shock and disgust. He was somewhat disappointed in himself. He realized he accidentally started eating. He didn't mean to. He was lured into comfort by he-man TV. He just forgot his resolve.

Who won?

You see, even with purpose, there isn't always an answer.

6:50 AM 10/27/2005

I don't have time to write this morning. Some days you just have to break down and work.

I haven't forgot my purpii though.

6:00 AM 10/28/2005

Bear with me. I am tired and, although I am going to try for some semblance of clarity, I figure I only have about a 50/50 shot.

The fire truck visited Sydney's school yesterday morning. Apparently that was the only period in which Sydney did not cry. At about 10:45 AM the school called Lynley to let us know that Sydney was crying and complaining that her ear hurt. Within seconds, juice cup in hand, I was in the car and on the way to pick her up. During my drive to Sydney's school I got a call on my superhero purpii phone that Lynley had arranged a doctor's appointment with Dr. Debbie. The appointment was set for five minutes before Lynley called me. I put the purpii mobile into hyper drive. Dawning my cape I raced into school, scooped Sydney up, and was back with her in her car seat in a flash. I floored it to Dr. Debbie's office (obeying all traffic and speed signs.) We arrived 11 minutes late.

Sydney continued to whine and cry and within minutes we were back in a treatment room. In another minute Dr. Debbie would appear in all of her medical glory. At first, we all thought that Sydney was overreacting to the probable ear infection but it did not take Dr. Debbie very long to realize that Sydney was acting appropriately to the raging ear infection. Her ear was bright red and full of yellow puss. Sydney's reaction was appropriate to the level of pain she must have been feeling. Dr. Debbie had the nurse put some numbing drops in her left ear. She drew up a script for the numbing drops and some Biaxin. We were out the door.

The rest of the day was much the same. Sydney was extremely uncomfortable and by 10:30 PM she had developed a temperature of 103. We treated her with our usual assortment of drugs both old and new. She would continue to wake up and cry every 30 minutes or so. When she wasn't crying she let out a constant whimper. She slept next to me almost like glue. It was good because I had a constant read of her temperature but awful in the sense that we did not get much sleep. Her fever broke at about 4:00 AM.

Today will be full of heavy duty purpose and comfort.

For some reason, although I hate to see my daughter suffer, an ear infection just doesn't seem to be that big a deal in the big scheme of things.

I have this one covered.

4:51 AM 10/31/2005

Okay, so maybe I did not have this one covered as much as I thought I did. Guess where we are? Yep, beautiful Cook Children's hotel and cancer spa. It all started on Friday afternoon. Sydney spiked a late afternoon fever of 104.1. Both Lynley and I got on the phone - she to Dr. Debbie and I to the HO doc on call at Cook's. I knew the rules and Dr. Eames has been very clear as to when I am supposed to call to let them know what was up. Even though everyone knew that this was probably an ear infection the safest course of action was a trip to the ER for a blood culture and some IV antibiotics. So, Sydney and I were off. The beautiful thing about being an oncology patient is the fast track through the ER. Nobody messes around with cancer kiddos. It was less than one minute before we were safely back in a room and out of the congested and overcrowded ER waiting area.

As anticipated we quickly received a blood culture and a dose of IV Rocefin. By about 9:30 PM we were back on our way back home. Sydney still had a fever but we had done pretty much all that we could do until we received the culture results. At about 3:30 AM we received a call back from the ER. Sydney's culture was growing something (not good) and we were to come back to the ER to be admitted. We quickly scooped up Sydney and we were back in the car heading towards the hospital. At this point we really did not know allot. We just knew that something was growing in her blood and that isn't something that was particularly good. We fast tracked the ER and before too long we were hooked up and receiving another antibiotic (Vanc). At about 6:30 we would be ushered upstairs into the familiar halls of the third floor.

By about 9:00 AM we knew that we were dealing with some derivative of strep alpha - not a particularly good bug to have running around your blood. Both Lynley and I were a little suspect. We both felt that the fevers were due to the ear infection and were leaning towards the idea that some type of contaminate must have been introduced to the culture. For as fast as the results came back you certainly would have expected to see a very sick and lethargic little girl, neither of which did we have at this point. Her fever had subsided and other than being a little tired she was downright chipper. Another culture was drawn and we were just waiting to see what would happen next.

Eventually several cultures would be taken and a slew of antibiotics passed into her veins. Nothing ever really confirmed the preliminary findings and eventually on Sunday morning we would find out that the pathogenesis of the original culture was actually Strep Pneumoniae and probably related to the ear infection. So, to make a long story short we should be going home today. Sydney still continues to fever in the evening but you would never know that she was sick. She is just as rambunctious as ever. It was a nice visit but it is time to go home.

You have to keep a close eye on your purpii.

5:25 AM 11/1/2005

We are home and last night Sydney experienced her first real genuine Halloween ever. You see, for the last 3 years Sydney has always been hospitalized during the festivities. Although Cook's puts on quite an incredible show for the holiday it was incredibly touching to see her eyes light up as she quickly grasped the concept. She was dressed to the nines as Puss N'' Boots from the movie Shrek 2. Graham went as an Alley Cat and Ainsley went as a little Ducky. It was about 6:00 PM when we arrived back on our street - more on that later. We slowly made our way up our street trick or treating at ever lit door. At first Sydney was shy and Graham just wanted to be held but it was not long before Sydney was running up the side walks. She couldn't hear a darn thing (more on that later, too) but she was having a blast. She is now a certified professional Halloweener and I imagine that she will wake up this morning and want to do it all over again. After about our fourth house she looked up at Lynley and screamed "I love Halloween, it is the best ever! I want to do it everyday." Sweet, sweet success. It doesn't get better than that does it.

Now, let me start again with a little background. We arrived home yesterday morning at about 11:00 AM. At noon, a transformer blew in our neighborhood and our entire block was without electricity. At that moment, the estimated time to have the issue corrected was at 8:00 PM so we gathered up the rugrats and headed over to DeeDee's house. The tricky part here was to get Graham and Ainsley asleep. Sydney was easy, she had a 2:15 appointment with her ENT.

You see, Sydney is doing fairly well but she is by no means 100%. She will continue to receive IV Rocefin every morning at home for the next week or so. In fact, we are expecting to hear from Home Health very early this morning. It is only a thirty minute infusion and other than the fact that her port is still accessed she should have a pretty normal week of activity at home. But, it really will not be normal for Sydney at all. You see, Sydney can't hear a thing. The fluid in her middle ear is thick and combined with her high pitch hearing loss she really can't hear. At first, we though she was just being obstinate. (Who, my daughter, never?) We would talk to her in the hospital and she would not even acknowledge our presence. After a little experimentation we quickly realized that the only time that she could understand us was when she was looking directly at us. Whenever she watches TV or plays one of her handheld games she turns the volume way up and puts her ear right next to the speaker. We have quickly developed the habit of tapping her on the shoulder when we speak to her. We make eye contact and speak clearly and loudly. For the time being it seems to be getting the job done. The little bugger can read some mean lips. I will have to keep that in mind in the future.

To make a long story short, Sydney will be going in on Thursday morning for surgery to have tubes put back in her ears. Hopefully this will put a stop to the ear infections and give her some relief -- and sound! It is funny, Sydney had tubes first put in her ears when she was roughly nine months of age. I remember being so incredibly nervous. To Lynley and I, at that time, this was major surgery on our first born. The risks were high for us naive and overprotective first time parents. This time, however, we have a, let's say, different perspective and aren't too terribly alarmed. In fact, it is quite the opposite. We are actually anxious to get the surgery over with so our baby can hear again, not to mention, in the big scheme of things and in comparison to everything that she has endured over the last 2 and a half years this is just a little scrape.

What an incredible day.

Hey, I can still scream I love you. After all, it's my purpose.

5:33 AM 11/2/2005

Hey, good news. Sydney did not have a fever last night. That was the first time since the beginning of last week. She is starting to complain that her ears are itchy which, to me, is a sign that the infection is starting to clear up. The only issue seems to be a looming yeast infection. Last night as we got ready for bed she started to complain that her hinny was itchy.

Yesterday's IV infusion of Rocefin went off without a hitch. Well, it went off with out a hitch once we unclamped her noodles. The wind up pump is pretty basic. We stick the syringe into the contraption, we prime the tubing, hook up her noodles, wind her up, and it is off and running for about 30 minutes. The pump comes with its own carrying case and sling so Sydney just throws it over her shoulder and she can go right back to playing. She is pretty proud of herself. She thinks it is really cool.

I don't know if I will have time to write tomorrow morning. As of right now we are supposed to be at the surgery center in Bedford (about 30 minutes away) at 6:00 AM. If it is anything like the last time we should be in and out in under an hour or two. We are anticipating that she will be able to hear much better and other than a little itchiness she should recover very quickly. Hopefully this will speed her recovery and put these ear infections behind us.

I had better be off. I have not had the opportunity to work nearly as much as I need to. There is a mountain on my desk. But, you know, when you have got a purpose some times things just have to wait.

5:46 AM 11/4/2005

Sydney can hear! It is really amazing what poking a couple of holes in some infected ears can do. Of course, this does nothing to correct her high pitch hearing loss from the ototoxic chemotherapy, but it does allow her to hear everything else again. The procedure went extremely well. We arrived at the surgery center at about 6:30 AM. Sydney played in the adjoining playroom until about 7:15 AM (Sure glad we got there on time!!) We then scuffled back into the surgery area and met with the doctors. The first order of the day was anesthesia. They wanted to gas her. It doesn't seem to be that big of a deal but to Sydney it is a huge hurdle. She still remembers people rushing at her and forcing an oxygen mask over her face when she had pulmonary edema almost exactly two years ago. Since that time, to say she had an aversion to masks would be an understatement. At first Sydney wasn't too keen on the idea but they gave her a cherry smelling mask to play with. After a few minutes of investigation and a significant amount of praise on our part the mask became her best friend. It just goes to show that if you can give a four year old a little control it makes all the difference in the world. We explained the procedure to her and moments later she was whisked off to surgery. She went happily.

Within about ten minutes she was back in our arms. They woke her up from the anesthesia which is a no no. She was not happy and she was screaming. We generally let her come out of the anesthesia on her own for this very reason. Over the next 30 to 45 minutes she would slowly return to normal. The remainder of the day would be fairly normal. In the morning she went to work with Lynley and in the afternoon she would rest at home. We capped the night off with a date night (Sydney and I) to Joe T. Garcias. We met up with Chance, his two hoodlums (Preston and Truman), and Monty, my partner. We had an early dinner and made our way home where she has been asleep ever since. She has coughed throughout the night. Today she will stay home again. Her port is still accessed because of her nightly IV infusion of Rocefin. It will be Monday or Tuesday before she is able to return to school.

Well, there you have it, another successful day in and out of the Dungan household. This purpose stuff sure keeps us busy.

5:25 AM 11/7/2005

We survived another weekend but, just barely. It seems whatever bugs we have floating around just keep moving from one kiddo to the next. Sydney is doing well. She has just completed her last dose of IV Rocefin. She will be going to the clinic this morning for a checkup and to hopefully be deaccessed. She had a fairly normal weekend at home although she is stating to get antsy. She has been at either the hospital or at home for the last week and a half. She needs to get out.

Graham has taken a turn for the worse. He has been running fevers for the last couple of days. His nose is stuffed and he has been left with mouth breathing only. He is miserable and the snot overflowith. Now I know what you are all saying. He is a man and therefore a wuss when it comes to sickness but I still maintain that my he-man Dudely, although sensitive, is just sicker than everyone else has been.

Ainsley seems to be doing pretty well. She has moments where it is clear that she is not feeling up to par but for the most part she is just happy go lucky Ainsley. She seems just happy to be here and is appreciative of any scraps of attention she can get in the chaotic household dominated by her big brother and sister. She gets just as much attention as the other two but listening to her you might just be convinced to call CPS. It is tough being the youngest.

I imagine today will be jam packed with doctors appointments. We definitely have Sydney's clinic visit early this morning but I would not be surprised if we ended up with appointments for the other two as well.

It will be a busy day of purpii.

5:50 AM 11/8/2005

Please make the sickness stop. I know the kiddos have got to be tired of being sick and trading around one infection for another. I really know that I am. It has now been a month of solid sickness. Sydney appears to be on the road to recovery. Yesterday we had her noodles pulled out (port deaccessed) and for the first time in what seems like forever she is not on any medication whatsoever. But, of course, now we have two other sick kiddos. Graham is the most worrisome. He is still running fevers and the snot still flowith in gallons. He also has been bruising extremely easily. As a parent of one child with cancer you really don't want to see one of your other children bruising easily. I know it is coincidence but Graham sure seems to be following all of the patterns that we saw when Sydney was first diagnosed - diarrhea, sickness that won't go away, etc. The bruising is what really, really gets me. Regardless, today Graham and Ainsley will be going to see Dr. Debbie and hopefully we can get on top of this once and for all.

Other than the constant sickness, life seems to be going on. I have been really busy working on the http://www.cncf-childcancer.org (CNCF) website. It has been a lot of fun as we are finally adding some great tools for parents and families. There is still a ton to do but it is coming along nicely. Give it a looksy. It has really changed. By the end of the week we should have all of the past years' conference videos available for download online and next week we are adding a website creation tool. This new technology will allow families to create there own personal websites on line to keep family and friends informed. It will be free to use for families of children with neuroblastoma. It is similar to what caringbridge offers but it will be far more robust. After that we will be finishing the online store and adding perhaps one of my favorite things - an online parents handbook. There are about 20 parents working on the handbook in all and it will eventually contain an entire library of resources. It will be searchable and allow anyone to read first hand information about neuroblastoma and its treatment (from both a medical and parental perspective) in an online library. Just think, anything and everything you needed to know about neuroblastoma in one place.

Well, enough of my excitement, there are purpii to attend to.

4:55 AM 11/9/2005

Today I will be telling a story about the good, the bad, and the totally repugnant. I am offering fair warning because it is gross and by writing it here I am only trying to deal with my inability to deal with the trauma. First off, let's talk about the good. We took Graham and Ainsley to see Dr. Debbie yesterday afternoon. As it turns out Ainsley is just fine. Graham on the other hand has a confirmed ear infection. Dr. Debbie was concerned (as are we) about the multitude of bruises that have recently popped up on the little Dudely. Again, a 20 month old bruising easily is not a good sign and, especially with Sydney's history, it was a serious concern. Dr. Debbie ordered up a slew of labs and shortly thereafter we were off to the hospital for some labs. Later in the afternoon we would find out that his labs were completely normal. His platelet count was almost 200,000 and his white count was somewhere in the neighborhood of 6200. The cells had appropriate morphology and the differential was right on. Perfect! Debbie also ran some metabolic tests and all came back normal. Blood sugar was the only thing that came back slightly elevated and that can probably me attributed to the lollipop and juice that he sucked down on the way to the lab. That was the good. But, it does not explain the bruising.

Here comes the bad. If the bruising did not come from that it must be coming from somewhere. It isn't me. It isn't Lynley. It isn't Ainsley. It must be sibling abuse. Don't call child protective services just yet but we suspect the problem must be coming from the rough housing that Graham and Sydney do on a daily basis. The constant pushing and pulling has finally caught up with the both of them. To be honest, I don't know what the answer is. It isn't like she is intentionally beating the tar out of him. To me it seems like normal sibling rivalry. Regardless, we will watch more closely over the next few days. Perhaps, I will duct tape some pillows on the little doughboy. That's it. I will get them some of those little blow up sumo wrestler outfits and just let them run wild. So, there you have it - the bad.

Now, here is where we tread on some really thin ice - the morbidly repugnant - read at your own risk. I know the only way I can deal with it is just to get it off my chest. So, I am sorry, but here goes. Last night things were running late with all of the excitement of the doctor's office, etc. We decided to run out and pick up dinner at Chick Filet. We plopped the kiddos in the car and ran to pick up dinner and Graham's antibiotic from the pharmacy. Everything was going as planned. We arrived back home, set the kids up for dinner ,and began chowing down. After dinner, as is the norm, I began taking the kiddos upstairs to put on their jammies and get them ready for bed. I started with Graham. I noticed a pungent aroma and realized that he needed a fresh diaper. I have gotten pretty good at diaper changing over the years and did not even give it a second thought. I plopped him down on our bed and ran to get him a fresh diaper, some wipes, and his truck jammies. When I got back into our bedroom he was, as usual, hiding in the pillows in our bed. I played hide and seek for a minute or so and then prepared for business. First off, I needed to undress him. I plopped him down on my lap and began to take off his shirt. I noticed the aroma was getting stronger. I then put on his jammy top. It was now time to take off his shorts. I stood him up between my legs and pulled his shorts down. At this point there was still no evidence of anything being awry. I sat him back down in my lap to take the socks off of his feet. Damb it was really starting to reek. I figured I had better change that diaper right away. I lifted him up. I looked down. There was a loaf in my lap. Wait a minute, how did that happen? His diaper was on! I looked at his diaper. He was half cheeked. The diaper was only covering half of his hinny. Hold on! I ran to the other room to get the plastic changing cushion and set him on it on the floor. I began to clean his tushy and the diaper. As the chaos settled I began to think rationally, "Wait a minute. If his diaper was only half on then the diaper only caught half of everything that he pinched off. Of god, there could be more loaves!" The tension and fear rose as I finished putting on his diaper. I would have to go on a loaf hunt. And so I did. I looked in the pillows (MY NIGHT, NIGHT BEDTIME PILLOWS!) Sure enough a doughy brown turd was perched upon my pillow. For the next ten minutes or so I would continue to find perfect half loaves all over my bed.

I took a shower. I did not sleep well. And so, that was my night. I feel much better now that I got that off of my chest. How about you?

Sometimes purpose stinks!

5:28 AM 11/10/2005

Wow! I sure got a ton of email yesterday. Apparently this type of thing doesn't just happen to people that have a child with neuroblastoma. Whew, I thought I was really getting the ugly end of the stick. But you were right, it sure was a "crappy" thing to happen to me. I also got some suggestions on what I should have said and, you were right, sometimes my purpose does "stink." Any way, I am happy to report that there were no half loaves found in me bed last night although I wasn't really given the opportunity. I don't think Lynley trusts me anymore. As I was washing dishes she snuck Graham upstairs, changed his diaper, put him in jammies, and tucked him into bed. Somehow, I think I am getting blamed for this catastrophe.

Regardless, yesterday was perfectly normal. No drama. No none at all. It was so unbelievably nice. Sometimes I reflect back on our lives and my diary and I have to think "This can't be real. This must be fiction. This could not possibly be my day to day life." It is almost comical. No, change that, it is too comical. How could we possibly have this much happening from one day to the next? I feel like I am living in a soap opera. It isn't bad but normal and boring sure seem like a nice treat now and then. A week of boring Dad's Diary "episodes" is just what I need.

Then again, let's be real. There is no boring when you've got purpii.

5:56 AM 11/11/2005

I am running late this morning! Let's just say that it is safe to say that everyone seems to be on the upswing. Ainsley woke up a bunch throughout the night (which is strange) but seems to be doing well. I think her new teeth may be bothering her. The other two rugrats seem to be great. Well, as great as two hyperactive twerps can be. They are learning to play better together and we have not seen any overt sins of violence in the last two days. For once, things are quiet.

I have to run. It will be a full Friday of purpose.

5:27 AM 11/14/2005

Well, let's see... Everyone seems to be doing okay. Both Ainsley and Graham are continuing to battle the crud. They both have some loose stuff hanging out in the back of their throats and you can hear it popping as they breath. Luckily however, neither really seem any worse for wear. They both continue to have active lifestyles and neither seem too bothered. Sydney, too, seems on the mend. She complained of her ear hurting on Sunday morning but other than that has seemed perfectly normal. All in all we have an incredibly healthy household in comparison to what we have battled for the last month or so.

I have got to tell you it is nice. It is nice to have sickness that is not life or death. It is great to have a cold where the treatment is not as bad as the disease, the side effects of the medication do not include death, and the late term effects do not have a lifelong impact. Yep, this stuff is pretty easy. For once, I don't have to worry about the sickness taking my daughter's life. Yep, that is all my decision. Hmmm. You think that is a strange thing to say? You must not have been around a four year old lately. That is a very big distinction. You see, before the disease got to choose whether my daughter continued to live. Right now, I do. Some days that is a really hard decision to make. But the important part is that right now, this second, it is my decision - not, I repeat not, something else's. I feel like Bill Cosby and I think he described it best in one of his many comedy movies. I don't know what happens to kiddos when they turn 4 years old. All of a sudden they become little people and they think they have the right to do, or say, anything that they want to. They believe that they have become experts in life and can make decisions on their own. They begin to disobey and the deceitful little ingrates show absolutely no remorse. Sydney can be such an enormous twerp and sometimes the only thing that can bring a parent solace and the feeling that they have succeeded is the realization that despite overwhelming odds they have let their child survive another day. Oh how they deserve beatings, frequent brutal beatings, but you, the great benevolent parent, rose above the occasion. After they deliberately disobeyed, they argued incessantly, they have shown blatant disregard from those around them, they have mistreated animals and siblings alike, and all with a smirk of pride; you chose to let them live another day - the sweet smell of success. You see, it is quite a distinction.

It is nice to feel you have control over your purpii.

5:53 AM 11/15/2005

Wow, are the holidays coming some time soon? This year has flown by so incredibly quickly and, once again, I find myself up to my eyeballs trying to get everything accomplished. Right now, my big push is for Lunch for Life which starts December 1, 2005 and runs throughout the month. It has been weeks of programming and we are in a mad rush to get all of the changes and additions to the website built and checked before the big rush starts. I am hoping to have the new updated website in place by next Monday but at this point in is going to be a stretch. We are doing some really cool things his year.

I really wanted to give the families a sense of ownership this year and I wanted our kids to have a larger focus and sense of participation. To accomplish this we came up with an idea to tie Lunch for Life to the holiday season this year. What I am creating is an online donor Christmas tree for each kiddo. Each time someone makes a donation in their name they will get an ornament hung on the child's Christmas tree with the donor's name on it. Each child that completes a Christmas tree - it will be a fairly tall order - will receive a special gift from Santa. I think it will be fun and people will be able to come to the websites and view the Christmas trees as they grow.

We are also adding a new dimension. I am working on getting a donor to sponsor an all expense paid dream trip to Disney World for one of the children and their families. Each time a donation is made in a child's name starting on December 1st it will register that child for a chance to win this once in a lifetime dream vacation. I am hoping that we can have a public drawing on Christmas eve with the results to be delivered by Santa Claus on Christmas Day. I think this will be one of those memories that will last forever for these families. And now, it is all down to the details. I think this will be the best Lunch for Life ever.

Well, I had better be off. As you can see, I am dual purpose today.

5:48 AM 11/16/2005

The good news is that everyone is fine. The problem is that I am hacked off. You would not believe the difficulty I have had trying to put together a trip for Lunch for Life. I was avoiding contacting Disney directly to set up the dream vacation. First off, I don't know a lot about the theme parks so I wanted to get information from organizations that planned these trips on a regular basis. That is, organizations that make dream vacations come true. I know that when a child gets a wish trip to Disney they get all kinds of special perks. I wanted to know what they were and how I could get my hands on them. The problem was that I was constantly shuffled from one person to another between several organizations. You see, there is a process to get a special trip at Disney. There is a multi-organizational chain of command. Mind you, I wasn't trying to get them to sponsor the trip. I was just trying to figure out how to go through the process so that I could do the same thing. Unfortunately, no matter who I talked to, I could not get the notion through to them that I was not trying to get them to fulfill a wish. I simply wanted them to tell me the kinds of perks and activities they provided for these kids and how we set them up. I even offered to sponsor the trip (financially) through them if that was what was needed to get the good stuff. Unfortunately, if I went through any of the organizations in this chain the kiddos would have to qualify for the wish. So, in short, I didn't want this to count as a "wish" for any of our kiddos (you only get one) so I have to work from outside of the box. I finally figured out (after hours on the phone and about 30 people) what the ingredients were to a perfect trip and now I am beginning to put all of the pieces together - one by one. I just could not believe how all of these organizations refuse to work with the others. There is definitely a mentality out there that says "Mine and I am not going to share anything with you!" (even ideas and even if you represent an organization as fine as the CNCF.) And that leads to the problem in the childhood cancer community, all of these organizations are so busy protecting what is theirs. There is very little sharing of ideas and common ground. There are thousands of organizations out there and they all refuse to work together (with a few exceptions that I know of within the neuroblastoma community) We would be so much stronger if we were unified. We just need to all agree that childhood cancer is bad and work TOGETHER using each of our respective strengths to work the problem. Apparently, few people can see the kiddos from the glare in the sea of bald heads. Okay, I am off my soapbox.

Back to my purpose.

6:08 AM 11/17/2005

Okay, so I am a little late this morning. I have been working on Lunch for Life since about 3:30 this morning and just didn't want to stop what I was doing. I am really having an absolute blast with this. I wish I could do his full time but I just can't afford to do so. I really believe we could make a huge impact on the neuroblastoma world. Things are starting to come together but there is still a mountain to accomplish by next week if I want to incorporate all of my ideas.

At home things are great. We are treading the fine line of normal. What do I mean? Well, I mean things are normal, not cancer family normal but just regular old normal. I am having so much fun with the kiddos and Lynley and I feel relaxed for the first time in as long as I can remember. Part of it is that I enjoy working on CNCF stuff and that really reduces my stress level but outside of that I am just happy. I am enjoying life. And here is where the treading the fine line of normal comes in. I fear being normal. It is an illogical reaction to our world but one that my subconscious necessitates. I don't want to stop fearing neuroblastoma because the fear has brought me such incredible closeness and appreciation for my family and what I have. I don't want to be comfortable. Something tells me that when I get comfortable again is when the worst happens and so I get scared every time things start to feel "normal" again. I won't take my eye of this disease and I want those cells in Sydney's body to always know that I hate them. I want them to fear me and as long as I stay vigilant and I watch and I worry, I feel like I am winning the battle. I fell control. Yep, my control is fueled by my hatred for this disease. Strange, huh?

Don't ever forget your purpose.

6:08 AM 11/18/2005

Yikes, another late start! What can I say? I am really having fun working on the Lunch for Life website. I am hoping to get most of it up and running this weekend but I am definitely going to have some more work to complete next week. That is okay, really, I don't think anyone will notice what is missing. There a bunch of new features and options so nobody will miss what they don't know is supposed to be there. The good news is that we will definitely hit or drop dead date which is December 1, 2005.

Things are pretty busy around the house but, then again, what would you expect at Dungan Manor. Sydney continues to maintain her health and seems to be really enjoying school. Today they are having a Thanksgiving lunch and Lynley and I will be there to join in the fun. There is nothing quite like dining with a gaggle of four year olds but, to be honest, I don't really remember what it was like not to. I need to make a mental note to take my wife out on a date again sometime soon.

Graham and Ainsley are both doing okay. Both continue to walk the fine line between being healthy and being sick. Neither is operating on all cylinders but both seem to be getting their engines started.

This weekend will be busy. We are preparing to go to Huntsville, AL next week to celebrate the Thanksgiving Holiday with Mimi and Papa. That ought to be very interesting. I am so looking forward to getting back on a plane with our 3 munchkins. Sarcasm? I think so. But, I really am looking forward to the trip. It will be great to get away for awhile. This will be our first family "vacation," sans treatment, in over a year.

Well, I best be off. My purpii will be rustling soon.

5:24 AM 11/21/2005

On the way to school on Friday I explained to Sydney that we would be joining her for lunch to celebrate Thanksgiving at the school. I thought this an excellent opportunity to teach my daughter about the purpose of Thanksgiving. Without getting to technical I carefully divulged its meaning. I told her that Thanksgiving was a day for us to be thankful for everything we had. I explained in simple terms. I said, for example, "Aren't you thankful for your yellow blanky? Think of what life would be like if you did not have your yellow blanky." She seemed to catch my drift. I said "Think about your friends at school. Aren't you lucky to have them? What would it be like if you did not have any friends?" "Daddy, that wouldn't be fun at all, I am going to thank them for being my friends." she said. This was good. She was getting the drift. For the next ten minutes we discussed all of the things that she was thankful for. Boy, how good of a dad was I. I done learnt her. I must admit, I was pretty proud of my educational savvy. After a few moments she asked "Daddy, who should I thank for my blanky?" Off of the top of my head I said "God, honey, you can thank him for your blanky and because you are here and happy."

Now this is where it gets confusing and I began to learn that I am not as clever an educator as I thought.

"Daddy, are we going to the castle?" The "castle" is the church steeple where the kiddos go once a week to ring the bell after chapel. "No honey, but you don't have to go to the castle to talk to God. He is always with you. You can thank him right now and he will hear you." After a moment "Wow daddy, God can hear really far away, can't he?" "Yes, honey." "Daddy, so we aren't going to the castle?" "Probably not, honey." "Well daddy, I really want to see God to thank him. Can we go to the castle?" "Well, honey, God may always be there but we don't necessarily get to see him." "Oh, I do. I see him all the time at school."

All of a sudden it hit me. I realized what she was talking about. She thinks the pastor at the school/church is GOD. Oh my. Oh my, my, my, my. How was this going to look. Here I am taking my daughter to a Methodist school. I am supposed to be helping to guide her spiritually and teaching her all of this stuff. I can just see it now. The next time she sees the pastor she is going to make some comment about him having super hearing and our house of spiritual cards will come tumbling down. I was shell shocked. I had no answer and I couldn't figure out how to straighten this out. Worse yet, we were already at school. I needed privacy for this discussion and, quite frankly, some input from Lynley. I decided to postpone this discussion.

We arrived early for lunch. Within about 15 minutes each of the classes paraded in to the feast. Sydney was glad to see us and sat down at her place right beside us. As everyone sat down and prepared to dine the pastor came in to bless the food. Sydney nudged me. "See I told you God would be here."

We finished the feast and took Sydney home.

Later that day I tried explaining that the pastor was one of God's helpers.

She still doesn't believe me.

I guess I am not as good a teacher as I though I was.

That's alright, just another lesson to add to my purpose.

5:54 AM 11/22/2005

Well, here I sit in the den with Sydney. What kind of child wakes up at 5:30 in the morning. It is kind of weird writing in my diary with her sitting next to me. I feel like I have to watch what I say so I won't get in trouble. Sydney is a twerp. Ha, she didn't notice that. I must be safe. Okay off to life, liberty, and the pursuit of happiness.

It was been an extremely busy couple of days but I am happy to say that I have officially finished up http://www.LunchforLife.org for all of the NB families to get ready for the launch on December 1st. I really think this year is going to be a blast for all of the families. By the way, if you are a parent of a child with neuroblastoma and did not get an email from me yesterday I either don't have your email address or the one I have is bad so make sure you go to the website and sign up so that I can send you updates and information. Right now we have about 140 families participating and I expect even more over the next week. For everyone else you are more than welcome to visit the site. In fact, I could use the help checking for typos and broken links so that I can get them all addressed before Dec 1st. Tell me what you think.

Tomorrow we leave for Huntsville, AL to spend the Thanksgiving Holidays with Mimi and Papa. We have to leave the house by about 6:30 AM so don't expect a diary entry from me. We have a ton to do before now and then. We haven't even started packing and today we are taking all of the kiddos to Dr. Debbie for a quick check up before we head out of town. All of them seem to be maintaining the fine line between sickness and health but they are at that point where is seems like it can go bad at any moment. It is going to be fast paced but one way or another we will get there.

Well, I would like to talk more but the wiggly worm beside me is craving some attention.

Gotta love my purpose.

5:14 AM 11/28/2005

It has been a wonderful Thanksgiving vacation. We are still in Huntsville, AL but we will be heading home this afternoon. It has been one of the most relaxing weeks in as long as I can remember. The kiddos have been superb and it has been down right fun to have the time to relax and just hang out with the little munchkins. We have kept them busy while we have been here. Aside from the usual Thanksgiving turkey gorgefest we have been busily dragging them from one place to another. The highlight was a trip out to the McCurdy's farm. Although Ainsley got the short end of the stick and was elected to stay at the house and sleep Graham and Sydney had the good fortune to mosey on down to the barn. There where animals everywhere. They had pigs, horses, peacocks, rams, and chickens amongst others and Sydney had a blast talking and petting all of the animals. Graham was content to just sit on the riding lawnmower. Sydney and Lynley would have the opportunity to ride horses and both had a great time. Graham, however, chose to sit and grunt on his riding lawnmower. That's my boy. We were finally able to pry him off when he caught a glimpse of two pedal cars that Doc had brought out for the kids to play with. Graham made one of those curious growls and ran towards the cars. I felt like I was watching Tim "The Toolman" Taylor Junior. As Lynley and Sydney continued to ride their horses I pulled Graham around the circular drive in his little fire engine pedal car. I must have gone around that circle at least a hundred times but I lost count due to dizziness. At last Sydney and Lynley got back from riding the horses. I though this would mean a break as Graham got an opportunity to ride. We plopped him up on the horse with Doc. He made one loop around the drive and the next thing we knew he was chanting "cars, cars, cars." Doc brought him back and as soon as his feet hit the dirt he was scurrying back to the pedal cars. I would spend the next fifteen minutes pulling the kids around the dirt drive in their respective cars in tandem. In total, we spent a couple of ours with the McCurdy's at their farm. I have to say that I haven't seen the kids happier in a long time. We completely wore them out and by the time we made it home both were asleep in the back of the car. In the end, Sydney loved the farm because of all of the animals, Graham loved the farm because of all of the machinery, and Ainsley loved the farm because she could finally get some peace and quiet.

I loved it because my purpii were happy.

5:27 AM 11/29/2005

We are home again and ready to face reality. We arrived back home at a little after 8:00PM last night. Sydney had already fallen asleep and the other two were not too far behind. This morning will be quiet a shock to them as we rush to get everyone ready for school and reality. The slow lackadaisical mornings at the Fowler's house are gone for the kiddos and we are back to the hustle and bustle chaos that we call home.

All in all, we really had a wonderful trip. It was incredibly relaxing and the first time I had worked less than 4 hours per day on a holiday since I started my own business. I really had the opportunity to concentrate on my family with all worries flushed out the window. I wonder if that is what normal life is like and then I quickly realize that, for the most part, everyone leads hectic lives. I wish this non-stress family focus time was something I could bottle. We just get so wrapped up in the daily grind that we forget to just focus on nothing and enjoy our kiddos for what they are. Don't get me wrong I spend lots of time with the rugrats everyday but I am always stressed because of the next thing to come. I will sit down with the kids and I will start to think about work or what needs to be made for dinner, or which bills are due, or who has an appointment the next day, or any myriad of little mundane things which will flutter through my brain. It seems as though I have to concentrate to block all of those things out of my head to just play with the kiddos. The difference that I experienced in Huntsville was that I did not have that junk floating around in my head and I was just able to play with the kids and focus on them without even thinking about it. It was so nice and so incredibly relaxing. I have got to figure out how to bottle oblivion.

I never realized a purpose could be low pressure.

5:26 AM 11/30/2005

Wow, the first morning back was as chaotic as anticipated. I don't know what happened once the kiddos feet stepped out of that airplane but they certainly transformed into a mutinous gaggle of twerpful little heathens. It was like night and day. Back in Alabama there was very little fighting between Graham and Sydney. They played frequently and pleasantly together. However, once they dawned the doors of our home again it became a "MINE" - fest They have constantly tugged and pulled at toys that the other had. It is amazing - no matter what Graham has, Sydney wants and no matter what Sydney has, Graham wants. I have resorted to taking away any toy that they fight over. Wow, what a mean Daddy I am. This of course leads to crying which seems to be contagious among the grabby little heathens. I guess crying in children is somewhat like yawning. You just have to yawn when you see someone else doing it.

I liken my experience over the last two days to that of a Greek god. Here I stood high on Mount Olympus in the nice quiet sanctity of my sanity watching over all of my little people down on earth. From where I stood, sipping the nectar of fine wine and grazing on the appetizers of the gods I could rule my kingdom. I could simply shoot a lighting bolt at the butt of any misbehavior. I was the benevolent, but decisive, dictator in this world.

Somehow, I was overthrown and I lost my power. The next day I found myself powerless running amuck in the ruler-less world I had previously watched over. The peons I had once directed with a fair and kind, but decisive, hand were now in control and they were punishing me. Chaos has become the rule of the streets and I am the target of their misbehavior. Ooh, cruel world.

Today, I will regroup. I want my power back, my nice comfy chair up on Mount Olympus, and my nectar of the gods (After yesterday, I really could use a stiff drink). I will win.

A purpose can even be a challenge in fiction.

4:30 AM 12/1/2005

Today is no ordinary day. In fact, today, this hour, and this minute is more important than anything I do all year with the exception of caring for my family. Today is the beginning of Lunch for Life. Lunch for Life was started two years ago. It was started by desperate parents of children with neuroblastoma because of the dire lack of research funding dedicated to curing the disease. What do I mean? The federal government provides research funding through the National Institute of Health and finally the NCI. These funds then trickle through several agencies where it finally falls into the hands of researchers. Last year the Children's Oncology Group (the largest group dedicated to children's oncology research with over 200 member hospitals) received $1.5 million to be dedicated to research neuroblastoma. Breast cancer researchers received over $15 BILLION.

Lunch for Life was created to bridge this gap. Over just the first two years Lunch for Life has raised over $500 thousand dollars for research into the cure of neuroblastoma. Right now there are three neuroblastoma research programs being funded because of this effort and at the beginning of 2006 we will be adding four more. We are making a difference and we will save lives.

Unfortunately, the fact of the matter is that, children continue to die from neuroblastoma everyday. But we can make a difference. We can change this reality and we can hasten a cure but it depends on us - each and everyone of us. We are the ones, you and I, that these kids count on. The paltry research funding scraps that they receive from the federal government is not the answer. We are the ones that can make the difference but it depends on you. I ask that you help me, the families of lunch for life, and, most importantly, our children by skipping lunch and donating the money you would have spent on it to the Children's Neuroblastoma Cancer Foundation. Additionally, I urge you to tell your friends and family and ask them to donate their lunches and propagate the message to their friends and family as well. It depends on you and I. There are no expensive market programs, no commercials, no loudspeakers. The message and our children's future depends on each and every one of us doing our part to ask the world to give up one day's lunch to cure cancer. That is all it takes but we need your help.

If just one of us told five friends to give up lunch today, and asked that the next day they asked five of their friends to do the same...and those five friends asked five of their friends to do the same on the next day and so on for the next ten days...Do you know how much money could be raised?

At just five dollars per lunch that would raise $9,765,625.00 in ten days.

It depends on each and every one of us. Be one of my five friends. Lets put a stop to neuroblastoma.

As an added bonus we have added a twist to Lunch for Life this year in light of the holiday season. Each of the 200 children with neuroblastoma that are a part of Lunch for Life have a virtual holiday tree at the Lunch for Life website. When you donate in a child's name that child also receives an ornament to decorate their virtual holiday tree. Ornaments earn the children donated prizes and a chance to win an all inclusive dream vacation for he/she and their family to Walt Disney World.

Please go to http://www.LunchforLife.org right now and donate your lunch. The website has all of the information you need. Then, most importantly, contact your friends and ask them to do the same. If we do this together we could put neuroblastoma research ahead by over 6 years in the next ten days. Yes, in the next ten days we could save over 1800 children's lives.

NOW, THAT IS PURPOSE!

5:41 AM 12/2/2005

What an incredible first day to Lunch for Life. Can you believe we raised over $22,500 in one day just from asking people to skip lunch? I am shocked and amazed. It was an incredible first day. Today, however, is just as important. This is where it becomes even more important to continue to get the word out. This only works if (a) we donate our lunches and (b) we ask others do to the same and (c) we ask them to spread the message. We need to fill these Christmas trees up with ornaments! If you haven't been there yet, please go to http://www.lunchforlife.org, donate your lunch, and add an ornament to Sydney's tree. Sydney is excited to see the tree fill up with ornaments and I have a feeling she will be thrilled when the presents start to show up. By the way, if you need a giving tree code for Sydney it is:13857.

On another note, this is the last time you will hear from me before we head back to New York for another round of 3F8 at Sloan Kettering. Boy, time flies when you are having fun. We are leaving on Sunday morning and we expect to be there for roughly two weeks. And, YES, all five of the Dungan clan will be in tow. Aren't you jealous?

Hey, it's a purpose. Wish us luck!

5:24 AM 12/5/2005

We are here and we are safe but, as you might suspect, it is hectic. I will try to update later in the day but right now I have to run. I need a shower before we race off to the hospital for another round of fun.

Purpose is really busy in the Big Apple.

5:02 AM 12/6/2005

Well, let's see. For starter's Graham woke me up this morning so that ought to explain my tardiness in getting to the diary. It is nice to be one big happy family in one room here at the luxury resort we call the Ronald but it makes it really difficult to get some work done in the morning.

Sydney had a pretty good treatment day considering the fact it was a first day back. We were expecting more pain and more drama but all we really got was just more drama. That is the good news. I missed much of the hour long infusion. I was on Graham duty. 20 months is officially that age when they decide they have a mind of there own and are not content to just sit and wait. Plus, it isn't really a good idea to have him sit and watch his sister go through treatment. We spent a good amount of the time in the playroom but most of it was rolling up and down the hallway so I could frequently peek in to see how things were going.

Sydney has actually pretty funny and she elicited some really funny remarks. The music therapists came by and they were in the process of training Lynley to speak with Sydney during treatments. I really do believe that it helps to regulate the pain and somehow it helps them with their ability to focus on breathing. Form what I can tell 3F8 does not only bring pain but it also brings some element of hypersensitivity. Lights are too bright, sounds are too loud, and soft touches are too abrasive. The trick seems to be to calm the environment and the kiddos as much as possible which helps them to relax. Anyway, the therapist was teaching Lynley how to speak to Sydney using their methodology. The therapist would whisper in Lynley's ear and Lynley would say something to Sydney. They had some success with the technique. They were able to control her heart rate and keep it in the 120s and 130s as opposed to the 150s and 160s. The problem was that Sydney wanted it quiet and the therapist kept telling Lynley to acknowledge to Sydney. So Sydney would say "Everyone just be quiet - NO TALKING." The therapist would say "Tell Sydney that you will not talk anymore." Lynley would say "Sydney, we won't talk any more." And, of course Sydney would yell "I said BE QUIET!!" The problem was that therapist kept telling to acknowledge Sydney which just made it worse. It was like an episode of the three stooges. Finally when Sydney had enough she said "Look mommy, if you say one more word I am not going to hold your finger anymore and I am going to hold daddies" That seemed to get the point across and, heck, you know me, that felt pretty good.

Well I have to run. The rugrats are all up and we have showers to take. Don't forget to drop by http://www.LunchforLife.org and don't forget to send your friends. Everyday counts if we are going to beat neuroblastoma.

Once again, I find myself multipurpose.

4:57 AM 12/7/2005

Good Morning!! Well, we survived another day of 3F8. Sydney actually tolerated the treatment very well. She had a perfectly typical round of antibodies. She was comfortable for the first 20 minutes, she then experienced some waves of pain which we quickly handled with a half dose of Dilaudid. That seemed to do the trick. She remained irritable and uncomfortably comfortable for the next 20 minutes before she fell asleep near the end of the infusion. We went home at about noon and Sydney slept most of the afternoon away. She would wake up perkily at about 4:30.

At dinner we ran around the corner to Delizia's for some Italian food. The kids were not very well behaved and I think it was actually more my fault than anything. I let work get the better of me. I have a situation at work where I was be blamed by a client for being unresponsive when in fact I had gone above and beyond the call of duty. I was livid and angry. You could cut the tension with a knife. I was walking around in a cloud of anger and although I never said a mean word to the children I know they could feel my stress. They acted upon it. I raised the stress level and they just did the same thing to fit in. It was totally my fault and I felt awful. Now, I was mad and sad. It brought back an important memory of what is important about life. I owe my kiddos comfort. I am supposed to be their soft place to land. Bad Mark.

To make it even worse, as the kiddos went to bed a fired off an email tirade at my client. It turns out that they sent the email to the wrong person. It was just someone trying to cover their butt. The issue had nothing to do with me or my company. By the time I woke up this morning I had a slew of apologies in my email inbox. I was right. Isn't that great? Well, actually no. Where does that leave my kids? They still had a miserable evening. They were on edge because I was. They felt uncomfortable because their Daddy forgot and brought work home with him. Daddy's actions certainly did not show them that they were the most important thing in his life.

Last night I wasn't a very good Daddy.

But I learn.

I love you my kiddos. You and Mommy are the most important thing in the world to me and you need to feel that love and comfort from me every minute of your lives. I won't fail you again. I am sorry.

You are my purpii.

6:23 AM 12/8/2005

Everything is okay. Kid's were up early and I was up late so that leaves no time for my diary entry this morning. Sydney had some fairly significant late pain yesterday after treatment. She was pretty hypertensive and there was some waiting before they let us go home. Late last night she had some nausea and threw up a little. I know it sounds bad but all in all it was actually not to bad of a day. I am still hoping today will be better for Sydney. Well, I have to run. I have purpii up to my eyeballs. I will try and write more later.

4:16 AM 12/9/2005

Now this is perfect. It is a little after 4:00 AM here in our luxury room at the Ronald. My wife is sleeping soundly on her bed, Ainsley is snuggled up in her blankets in her bed, and Graham and Sydney are cuddled together sleeping between Lynley and where I would have been. I am sipping fresh coffee in the chair next to the window as snow gently falls outside. It is quiet and the only sounds that can be heard are my fingers at the keyboard. It is incredibly peaceful and totally wonderful.

Sydney had an excellent treatment day. She only required one half rescue dose of Dilaudad. Her pain was typical for her during treatment. She did not experience any pain during the first half (30 minutes) of the infusion. At about the time the flush went in she started to complain of pain. Cat, one of Sydney's favorite nurses, quickly doused it with her one and only dose of Dilaudid. For the next five or ten minutes Sydney was clearly uncomfortable but was able to reach her state of uncomfortable rest for the last part of treatment. She rested for about an hour before reawakening in good spirits. We left and went back to the Ronald at about noon. Sydney would not sleep the rest of the day which would create some tense chaotic moments of misbehavior in the afternoon but by about five it seemed as though everyone had returned to normal. We had a really nice dinner at Dallas BBQ and went back home early for some shut eye. A new vaporizer in our room was just the trick as we all slept quietly, comfortably, and completely.

A surprisingly relaxing day of purpose for a change.

4:29 AM`12/10/2005

We really had a pretty relaxing weekend and Friday's treatment went well. In fact, Sydney did not even have a single rescue dose of Dilaudid on Friday. It wasn't that she did not have any pain. She had some pain but it really lacked in its usual intensity. The only real signs of pain that we saw came with about a minute left in the infusion and at that point we realized that a dose of Dilaudid would be pretty much wasted. By the time we found someone to push the pain meds and they actually hit her system the days treatment would be over. We decided to wait it out. Before the end of the infusion she was back into her usual uncomfortable state of rest. She would only sleep a hour before we were on our way home again.

We spent much of the weekend relaxing. We went out on the town a few times but spent the majority of our time around the Ronald. It is getting so close to Christmas that the activities are really starting to move into high gear. On Friday night the had a dinner and Santa Claus was there with presents. After we had all thoroughly filled ourselves with the Italian smorgasbord. it was time for the kiddos. Sydney was about the fifth child called and was delighted to sit in Santa's lap. Santa talked to her for a moment, took a picture with her, and then she was back off of cloud nine. She quietly opened her present in the background. Karma must have been flowing in our direction because Sydney received a baby doll, the one thing she had drilled into every Santa she had seen this year. She was ecstatic and immediately went back up to Santa to thank him for her gift. It was a moment a Mommy and Daddy could be proud of. Graham also had the opportunity to have a moment with Santa, however, he was not nearly as enamored by the experience. He is still in the age of stranger danger and was skeptical of the hairy man in red. We consented to have his picture taken but was happy just to get out of there - with a present or not. I thanked Santa and we were on our way.

The next morning we would have breakfast with our dear friend Allie. We followed that with a trip to the Hello Kitty store and a stroll in front of the window displays at Macy's. We would make a trip to Times Square but quickly made an exit as the crowds were just impossible. We decided to head home where the kiddos would nap much of the afternoon away.

Sunday was much the same. There were activities at the Ronald and we pretty much just hung around. With the breeze it was just too cold outside so we postponed trips to the park and Rockefeller Center. All in all it was a pretty nice family weekend.

For now, however, we are back to the grind of treatment and a day full of purpose.

4:14 AM 12/13/2005

I am glad yesterday is over. It wasn't bad. It was just strange and that strange just kind of left us off kilter for the remainder of the day. First off, it was a Monday so we knew going in that it was going to be busy and there would be plenty of waiting. Sure enough, we hit that one right on the nose. Luckily, Sydney's ANC was 24.4 (extremely high) so she did not need a GM-CSF shot. That would shave off nearly an hour as we would have to wait an hour after the shot until we could begin. As it turns out it didn't really matter. We didn't start for nearly two hours. We did save Sydney a needle stick so that was a good thing.

Sydney's treatment was just plain strange. She did not feel any pain until the treatment was nearly over and, even then, her heart rate was still only around the 120s. It was hard to tell if she was really in pain or whether we were just dealing with Dilaudid funkiness. We tried some old tricks that we had up our sleeves but nothing seemed to work to well. She continued to cry, rant, and rave for the next 20 minutes. I know it sounds awful but we never ended up treating her. Nobody, nurses included, knew that we were truly dealing with pain and everyone was reluctant to treat it.

In the end she would rest for about 30 minutes before we were shuffled out of the treatment area. Beds were in high demand and sleeping off the funkiness was not a high priority - there were kids that needed to be treated. I would bring her home and Sydney would be edgy the remainder of the day. She never really rested but she played quietly most of the afternoon. She always had that look in her eye as if she could go off at any minute but she never did. By about 6 o'clock we all ate dinner and then went immediately to bed. It was a strange and exhausting day.

Here is for hoping for a more routine purpose today.

4:02 AM 12/14/2005

Well, I guess routine is when you do something just like the day before. If that is the case, then we plum have a routine going here. It is just so weird. I am so much more comfortable with the come in, take your dose of pain, and leave thing that this seems absurd. For the third day in a row Sydney did not have any rescue doses of Dilaudid and seemed to fair pretty well. She did complain of some pain during the last 10 minutes of the infusion and a little thereafter but she refused her Dilaudid when asked. On top of that her heart rate never really climbed that high again. Yesterday, at the height of the madness her heart rate barely climbed above 140 and the majority of the time it hung around the 120s. It was a busy day at the clinic and we were ushered out of the door pretty quickly after our treatment. Sydney spent the rest of the day sleeping. In fact it would take some pretty significant poking and prodding to get her out of bed at about 4:30 PM. We would eat dinner in and make a relatively early night of it.

Graham and Ainsley seem to be doing pretty well. Graham is really approaching that age where he has discovered that he has a free spirit. It is great to see but it is also a challenge to restrain him. It is getting tougher and tougher to bring him to the hospital while Sydney is in treatment because he is no longer content to sit and watch a movie. His little mind is exploding with ideas and he is ready to explore his world. Okay, that was a delicately polite way of saying my son is a menace. But, the Dudely just wants to get out and explore and nothing is going to stop him. Ever since he discovered he had free will he assumes that it also means that he should have the right to do whatever he wants whenever he wants to which makes for some tense moments around a busy hospital. Regardless, we try to keep him busy and focused.

Well, I had best be off. I still have a mountain of work to do and the beds are starting to rumble.

It will be a busy day of burping, chasing, and cuddling purpii.

5:04 AM 12/15/2005

Let's see. It is 5:00 AM and everybody is awake. Something tells me this is going to be a very long day. Everyone is fine but there is obviously no time to write.

Wow! Purpose!

3:59 AM 12/16/2005

Well, as it turns out, yesterday was just as fun as I had predicted. It was a long day of no naps and running Mommy and Daddy ragged. Sydney's treatment was, once again, highlighted with a lack of rescue doses of Dilaudid. It sounds like a good thing. No rescue doses - that must mean HAMA. Not necessarily. There is definitely still something going on. She still has periods where she cries out it in pain. However, they are short-lived and she seems to react just as though she has received a rescue dose. She is able to find the state of uncomfortable rest on her own and is able to deal with the treatments. Don't get me wrong. We are still hoping for a HAMA but this just doesn't appear to be a clear cut case. Today will be our last treatment for this cycle and we will be heading home this afternoon.

To give you a glimpse into our world of chaos I would like to tell you where Sydney is sleeping right now. She is about 5 feet from me - sleeping in a drawer. When I went to bed last night she was cuddled up wit her Mommy but right now she is sleeping in a drawer. Don't get me wrong. This isn't a case for child protective services. It really is a pretty sizable drawer. But, nonetheless, my four year old daughter, for some unknown reason, elected to sleep in a dresser drawer last night. She has pillows, blankets and everything you would need to make a bed - it is just in a drawer. I can't wait to hear how she came about this decision.

Wonders never cease.

Neither dose my purpose.

Today we go home!

4:43 AM 12/19/2005

The more we go to New York for treatment the better it feels when we get home. Boy, were we happy to get home. Don't get me wrong. I am very thankful that we can be together. I am thankful that there is a place like the Ronald for us to stay. I am thankful that there is a place like Sloan for our children with neuroblastoma. I am thankful that Sydney handled treatment so well. But, dear God, am I thankful to be home. It seems as though I forget every time how high stress it can be with the five of us in one room. I know that the stress level is something that we as parents are supposed to control but after two weeks of day in and day out treatment and treatment life even the best of us begin to go stir crazy. I am lucky that I have Lynley beside me because she always seemed to be up when I was down and vice versa. For the time being, as nice as it is for us all to be together I am currently swearing off another trip for all of us. Who knows, by February, I will probably have forgotten again.

So, we are home and it has been a busy weekend. We have had to do all of those things that the rest of the world has spent the last two weeks doing. We started early Saturday morning. The rugrats were up at 5:00 AM. By 7:00 AM we were frazzled and already ready for a nap but we persevered. We loaded up the kiddos and headed out for a quick breakfast on our way to pick out a Christmas Tree. By 8:00 AM we were at Lowe's pillaging through the rows of firs. There weren't many left which elicited a string of "I told you sos" from Lynley who wanted to purchase a tree before we left for New York. Never the less, it did not take long before we, as a family, selected the spindliest excuse of a tree you could imagine. We would have made Charlie Brown proud. The tree actually started at about 8' tall but somehow, between the trimming and the ride home, we ended up with a tree that was just under six feet tall. I don't know what happened. I guess it was just too cold on the way home and it must have shrunk because by the time I had it mounted on the tree stand I could just about see over the top of it. Unfortunately, I was too busy to worry about it so I lifted our Christmas sapling up (with one hand mind you) and brought it into the living room. It is terribly undersized for the room but it does have the nice Christmassy pintsize elven quality to it that just screams Merry Christmas. I think we may just surround it with Sydney and Graham's toddler furniture to make it look like we did it on purpose.

The rest of the weekend was spent decorating, unpacking, and Christmas shopping. By Sunday both Lynley and I were tired to the bone but ready for a nice relaxing week at work.

The great thing about purpii is that sometimes work can seem like a vacation.

5:22 AM 12/20/2005

Wow, we are back in the real world. Yesterday was a busy day but nothing like the two weeks that preceded it. We were just playing catch up. There were things like returning phone calls at the office, scheduling HAMA draws, scheduling January scans, grocery shopping, shuffling kids to and from school, and meetings. You know, normal people stuff. It was entirely relaxing. I felt like I actually had some control for the first time in weeks.

Sydney had a pretty good first day back at school. Her teacher was absent and many of her friends were already traveling for the holidays but she was glad to be back in her element. Unfortunately, Sydney missed the school Christmas party which was last Friday but, the good news was that she still got to reap the rewards. There was a bag of goodies in her cubby and a couple of presents around the tree. The great news was that the classroom now had a brand new kitchen to play in and she had it nearly all to herself. I am hoping that today Miss Nicole will be back in the classroom and more of her friends will be there.

The other rugrats are doing great. Graham is recovering from the trip to New York and, he too, seems to be nestling back into the comfortable routine of home life. We are still dealing with some issues related to Sydney's treatment. You see, Graham is in that stage where he mimics everything he sees. During our stay in New York he was not only exposed to Sydney's treatment (on a limited basis) but he was also exposed to the Dilaudid aftermath. Don't get me wrong, Sydney tolerated treatment and the lingering after effects much better this time. However, she was still not herself and Dilaudid outbursts were frequent. As much as we tried to shield Graham from this behavior he was still quick to pick up on it. So, to make a long story short we have a case of Monkey See, Monkey Do or, more specifically, 20 month old copy cat twerp see raging narcotically induced psychotic, 20 month old son try and pull same stuff at home.

As much as I love having the family together while we are in New York Graham is of a certain age where I think it may be best to split the family up again in the future. Maybe we can just pray for a HAMA instead.

There are side effects to purpose too.

5:40 AM 12/21/2005

I am running a little behind this morning. I have been working diligently on some items for "Lunch for Life." You would not believe the amount of work that goes on in the background. I must get 50 email per day. At home it feels like we are settling back into our lives. Unfortunately, with that also comes doctor's visits, etc. Sydney has an appointment at 2:30 today with her ENT. While we were in New York the doctors at Sloan were not too pleased with her ears and, more specifically, the placement of the tube in one of her ears. Although she is not technically sick her ears certainly don't look healthy. She is currently on a 10 day regimen of antibiotics. We are hoping to get to the bottom of whatever the issue is this afternoon. It looks like Graham may also get a trip to the doctor today. Yesterday afternoon his voice became scratchy and by dinnertime he had a fever of almost 102. We put him to bed with some Tylenol and that is where he has been ever since. Ainsley, however, is doing just dandy. Today ought to be another jam packed but interesting day. We shall see what happens.

It seems like there is always something going on with my purpii.

5:43 AM 12/22/2005

It was a doctorful day for the Dungans. The first to get checked out was Sydney. Sydney, Ainsley and I actually left a little early. We were hoping to get in and out before DeeDee left to pick Grammy up at the airport so that we could tag along. Our master plan succeeded. We were in and out in a jiffy. Unfortunately, the news was not particularly good. The tubes that were placed in Sydney's ears about 6 weeks ago were making there way back out again. The tube in the left ear was about 3/4s of the way out and the one in the right ear was about half way out. She also has a small sore next to the tube in the left ear which explains some of the pain. Dr. Lowery gave us a prescription for some steroid drops to help to reduce the swelling and inflammation and hopefully to reduce her ears' rejection of the little tubes. From what I gather there is little hope that they will stay in very much longer.

As we raced off to the airport to pick up Grammy, Graham was at Dr. Debbie's office with Lynley waiting to be seen. It turns out that Graham is sick from the top of his head to the bottom of his little toes. He has contracted a virus which led to bronchitis and a major diaper rash, amongst other things. He is now on albuterol treatments and prednisone and he is also being treated with an antibiotic to prevent any secondary infections during the Christmas holidays. (Please remember, Dr. Debbie gets really mad at me when I don't point out the reasoning behind treating with antibiotics and I am sure she would want me to say that she is not treating a virus with antibiotics.) The poor little dudester sounds just like Elmer Fudd but I am glad to point out that, although the fevers rage on, he is just as playful as ever. Here is hoping for a healthy Christmas or him.

Well, I best be off. It is just days away from the big drawing for Lunch for Life and I have mountains of email.

I will be dual purpose again today.

5:10 AM 12/24/2005

Oh I got in big trouble for not writing yesterday. I was under a huge deadline at work. Luckily I finished up pretty early and I had the opportunity to spend all day with the kiddos. Graham is still a bit under the weather but he seems to be getting better by the minute. His voice is far less scratchy and he appears less snotful. He is still a contagious bucket of germs. It is really difficult to care for Graham and not get sick. He just wants to sit and cuddle and about every five minutes he needs some kisses. You simply can't resist his pathetic chars and the next thing you know you are getting a snot kiss. If you haven't given the Dudester a kiss he will begin to inch over. The next thing you know you have toddler in your lap trying to give you a full on kiss. You can see the germs swarming all over his face. You try and resist. First, you try explaining that he is sick and that he has germs. That goes over like a lead balloon. You try to dismiss him and then it begins - the "pease" followed by the please sign. There is no way of avoiding his charm. Here he is - sickwy wittle Graham - sitting on your lap saying "pease kisses, pease" in his scratchy little voice and patting his chest (that s his sign language for please). Yep, there is no doubt, I am going to get this virus.

The good news is that Sydney and Ainsley seem to be doing great. So far, they have both eluded Grahams kissing charm and seem to be fit as fiddles. We are continuing to treat Sydney's ears but so far the only times she has complained about the pain was when we put the drops in - apparently there is a burning sensation.

Well it is really time for me to run. I still have some things to do for Lunch for Life and its final day before the Disney drawing. So, if you haven't signed up, run and do it now at http://www.lunchforlife.org. The clock is ticking for one of these kiddos to win a trip to Walt Disney World.

For me the time is running out to. Santa has me doing some extra work this Christmas and there is a mountain to do. For those of you that are up at midnight tonight strewing drunken egg nog explicatives at toy parts, rest assured that I will be doing the very same thing.

Merry Christmas and a Happy Purpose to All

5:31 AM 12/26/2005

What a wonderful Christmas! It takes on an entirely new meaning when you have three kiddos. This was first year that Sydney really comprehended Christmas and Santa Claus. I can't wait until Graham and Ainsley get to that age where they can really understand what is going on. For me it was very much like a rebirth to see Christmas through there eyes. I have been grown up for far too long and I had forgotten about so many of the subtle nuances that make Christmas what it is through a child's eyes. The presents, traditions, and family are all nice but there is some element of magic that appears when it has been filtered through a child's psyche. It is that piece of magic that I had forgotten about. I had stopped believing in Santa long ago but yesterday I was starting to believe again. That is one of the great gifts of having children - the ability to relive through there eyes.

Well there are still a few day's of Lunch for Life left this year but I am ecstatic to announce that Paul Saxon won the dream vacation to Walt Disney World. I can't think of a better family to win the trip. For those of you who may not remember Paul was diagnosed at Cook Children's before Sydney. In fact, his Dad was very instrumental in my families ability to cope during those first few weeks. He was the one that instilled hope that life could be livable. Paul relapsed about the same time that Sydney received those funky scans just over a year ago. He has been treated with chemo ever since. He has responded to treatment and seems to be doing pretty well. He has fought a long and hard battle and I can't think of anyone more deserving of this trip.

Well, I had better be off. Today is another day off from reality. In fact, the kiddos still have a few presents to open and there is a rumor floating around this morning that we may even sneak off to Six Flags. It will be another day of reliving with my purpose - hooray.

5:17 AM 12/27/2005

Well, it is back to the office for me. Lynley and her parents will be running the herd today. We never quite made it to Six Flags yesterday and the kiddos spent much of the day exploring all of the toys that they had received the day before. Sydney ended up frittering most of the afternoon away in her bedroom. We are currently in a battle of the wills over her afternoon nap. Sydney's naptime is important. Without it she seems to be on edge for the entire afternoon and evening. The difference in her is amazing and you would not believe that they are the same little girl. If she takes a nap you will find her to be helpful, thankful, and playful. She is able to cope with simple requests and is an absolute delight to be around. It is evenings after naps that are filled with all kinds of fun. We are able to do projects and it just seems like this is what parenting is supposed to be all about. However, when Sydney does not take a nap she is the complete opposite. She is demanding. She cries at the drop of a hat. She is argumentative and just about anything ordinary quickly escalates to the unimaginable. So, for these reasons we have instantiated the "You will stay up in your room until you take a nap." rule. The problems is that she only goes straight to sleep about half of the time. The remainder of the time she plays and constantly makes trips to the bathroom. It is these days that it is an issue. If we give in and let her come down stairs when her brother and sister wake up we can be guaranteed an afternoon and evening of uncivil disobedience. Not only we she be out of sorts but we will also see the effects on her brother and sister. In the end everyone will have a rather stressful and miserable night. On the other hand if we force her to stay in her room it may be several hour before she takes a nap. In the end she may stay in her room for 5 hours to get a half hour long nap. The end result will be a delight to be around but do the ends justify the means.

Don't get me wrong. I am not selfless. That first hour when all of the kids are napping is wonderful. It is the first really relaxing break in what has already been a 8 hour day. This is time that both Lynley and I can do just about anything we want to. It is quiet and this time is ours to spend just about any way that we want to. But after that first hour or two I am ready to be surrounded by my little twerps. I am ready to go play trains out in the playroom or color in the kitchen. I am ready to go fix the cabinet door with my drill as little fingers twist and pound a plastic screwdriver below me. I love that stuff. I love my kids and my family and that is why I choose to spend my weekends with them instead of somewhere on a golf course or a country club. I love being with them and this is the problem. My twerp numero uno is upstairs in her bedroom banging on the walls. She is not sleeping. She has not slept and if I don't "give in" she will remain in her room for another two or three hours. Two or three hours that I would rather spend with her. I am conscious of the fact that I want to spend time with my kiddos but especially with Sydney. I cherish every moment that I get to spend with her because I have spent the last two and a half years living with her that very way - moment to moment and minute by minute. I don't like frittering away our afternoons in her bedroom but I don't know another way. It is frustrating for the both of us. I know that it is better for everyone involved if she rests but at what point is it just ridiculous.

As usual, there are no absolute answers when it comes to purpii.

5/27/2005 12/28/2005

I woke up to quite a surprise yesterday morning. Someone, an idiot I presume, busted out two of the windows in my car. It just makes no sense. Nothing was stolen, everything was in its place, and yet my car was clearly missing two windows. Whoever did it was also perhaps the lowest common denominator of a human being because not only did he bust out my windows but he busted one of the windows directly over Graham's car seat. Now, I know, I have enough kids that you could scantly break a window in my car without it being next to a car seat but that's not the point. This is my rant and I am totally justified. The other window that this stellar example of a human being busted out was directly over a large 2 foot magnet bearing Sydney's picture and a plea for Lunch for Life. It is one thing to bust out some windows in a car but it is quite another to bust out the windows of a car of a family that clearly has a child with cancer and then to top it off by busting out a window directly over one of the car seats. I don't know if you can get any lower than that. I think this sets a new record for scum of the earth.

Well, after a couple hours of vacuuming and $384 the drama is over and the car has been repaired. Merry night after the night after Christmas. I haven't been outside to check the cars this morning. I am just going to assume the are safely nestled into their parking spaces with gas and oil conditioner dancing through their heads.

The kiddos had a pretty good day. I was at work but from my understanding they made it over to the science museum. Gauging from the stickers that were decorating the entire family I am guessing that I was the only one absent. Rumors floated around that everyone had a pretty good time and by my arrival a little after lunch everyone was asleep (or fighting it - SYDNEY) up in their beds. Sydney would stay in her bed for almost 3 and a half hours with nary a wink. She would be edgy and temperamental for the rest of the evening. The rest of the brethren would sleep well and all had a pleasant afternoon. By about 7:00PM all had been stretched to their limits and we made a fairly early evening of it. Today will be another day of work for me but should be relatively relaxing for the family. Tomorrow however will be a trip to the clinic for a checkup and HAMA draw. Start performing your HAMA dance now.

Purpose has no vacation.

5:55 AM 12/30/2005

Yesterday included a trip to the clinic for a HAMA draw. My only real problem was the addition of a glass partition wall that they put up to separate the reception desk from the waiting room. I am not a fan of glass partition walls in doctor's offices. It makes me feel like a second class citizen. I noticed that the wall did not go all the way up to the ceiling, so, when I needed to talk to them I just talked with my head up into the air instead of opening the sliding glass window. I felt like I was ordering fast food. This was my big moment of protest but it was all in good humor. The clinic visit went smashingly fast. In fact the only thing holding up our departure was the fact that we were socializing. Sydney faired pretty well. She received a thorough check up. Her ears continue to be the only area of real concern. The tube in the right ear still appears to be about half way out but the tube in her left ear now seems to be all the way out. The rest of the check up was just semantics. Sydney is doing very well and we are thankful that she has seemed to skate by without getting Graham's virus. Lynley and I were not so lucky. We are both under the weather and deteriorating rather quickly. A stuffy nose and sore throat will be our companions today.

After Sydney's regular oncology appointment we met with the nurse practitioner in charge of late effects (oops, I mean survivorship) This is the team that will help us navigate the murky world of survival after cancer. All kids with stage IV neuroblastoma will deal with some late effects. The issues run the gambit from secondary cancers to things that we already know about such as hearing loss and teeth problems. There are a myriad of potential late effects that we will need to become accustomed to watching out for and this team will teach us not only how to spot the issues but how to deal with them as well. They will also be helpful in teaching us to navigate the world well after cancer. They will help us with questions like - How does one get health and life insurance after having cancer? We are getting ready to enter that post treatment world again. Although I would love the idea of not having to go to New York for another round of treatment, there is something so comforting about doing "something."

Well I had best be off. There is a mountain to do at work today. I have three days off to help us usher in the New Year.

2006 will be my first full year with 3 purpii. I will definitely have my hands full. May next year bring as much success as the previous year did (success being measured by the fact that we are all still here and still together.) If you will remember back to last year we never knew if this day would come again.

It is all about purpose.

Until the next time...