Tuesday, July 31, 2007

6:20 AM 7/31/2007

Yesterday another angel gained his wings. Nathan was diagnosed with neuroblastoma just two months before Sydney in April of 2003. His mom has been on the list serv that I participate on for nearly as long. Although Nathan was treated at Sloan Kettering we never had the opportunity to meet in person but it feels as though they half been life long friends. Over time, these families feel like they have become my own. I read so many of their sites daily and often we parents correspond. You learn the children's likes and dislikes and share the experiences of the all the ups and downs. It feels like losing a close friend and there have been so many lately.

I find myself thinking back on all of those that I know and have known and it becomes increasingly clear that we are still very clearly losing this battle. Nathan is one of the few old friends that we had left. I pray that his family finds strength for today I feel like a have none. Today I feel like I lost another little piece of me.

I will squeeze my purpose a little tighter today.

Monday, July 30, 2007

6:03 AM 7/30/2007

Good morning!! Here it is Monday morning all over again. Our family had a pretty good weekend. Sydney is doing well although she continues to look like a poster child for mosquito abuse. Her legs are covered and we have had some great difficulty keeping her from scratching them. By the end of every day it looks like we are beginning to win but by morning she has scratched them all to bloody sores again. It is fairly disgusting. We have tried a mixture of topical ointments to soothe the itching but nothing seems to get past her sleeping psyche. We have tried everything you can think of over the counter and have even tried some home remedies such as toothpaste. Most work for awhile but none seem to last through the night. Other than looking like an insect bite experiment gone bad she seems to feel relatively good. She enjoyed hours of swimming on Saturday and a fun trip to the zoo on Sunday.

Graham, wow, what can I say about Graham. Graham is about the sweetest kiddo ever. He is the sweet sentimental one of the bunch and quiet often tortured for his innocence. It is this quality of his that I am most proud. He truly cares for others and quite often puts others before his own needs. That is a tremendously surprising trait of a 3 year old if you ask me. Quite often, whenever one of his sisters beckon he is always the first to help. He is genuinely sweet. Of course, with this comes sensitivity as well. Graham often wears his heart on his sleeve and can easily come to tears. As a big manly man I would love for him to toughen up a bit but I can honestly say that I would not trade it for his sweet demeanor. This is not to say that he is a cry baby either, at times, we also get a glimpse of his inner strength. Last week, I had to run back to the school mid-morning to drop something off. I was watching as a large boy was giving Sydney a hard time on the play ground. He was chasing her around throwing balls at her. It was clear that it was upsetting Sydney and she was near tears. Graham grabbed a ball and stood right between Sydney and the big boy the next time he tried to throw a ball at her. He was twice Graham's size. He tried to throw the ball at Sydney and Graham deflected it and then threw his ball right at the other boy knocking him back. All of the kids were shocked that Graham stood up to this little boy. All the other kids ran up to say something to Graham and then everyone started playing catch except for the large boy that was bullying Sydney and the other children. He left to go play by himslef. I have never felt more pride than when I watched Graham defend his sister like that. That is my boy!

Ainsley. hmmm. Ainsley. Ainsley will no doubtedly be my biggest challenge. She is the sneakiest little twerp imaginable and she certainly has cuteness working in her favor. She is fearless and absolutely adorable. She is also the one of my children gifted with the most sophisticated sense of humor. She is really quite funny and her humor seems to transcend her age. She does and says things that would surprise me if I heard them from someone 5 times her age. She also seems to be the toughest of my gaggle. She has no fear of giving back what she receives and does not stand for any abuse. She is also smart enough to realize which battles she can and cannot win and seems to use humor to get herself out of situations in which she realizes she will lose. I have not seen this trait in any of my other children and it amazes me to see it in a two year old but it is clearly part of who she is. I hate to say that one of my children is smarter than any other but there is no doubt that this one ranks the highest in street smarts. There is no doubt in my mind that this will be my child that tries to sneak out at night when she is a teenager but thankfully she will probably be the one that can best handle herself. She exudes confidence and cleverness. The funny thing is that, if you asked her teachers, I would think they would give you a completely different picture. They would tell you that she was sweet and demure - more innocent than any of my other children. They would say that she is quiet and loving. The funny things is that she is just reeling them in to her web of trickery. She is just setting the stage so that her peers are the first ones to be blamed when she steals the cookie off of the table. I am telling you. Do not underestimate this one. She is the sneakiest yet. And yes, she still has me wrapped around her little finger.

Well, there you have it, a long overdue state of the Dungan's report.

No wonder I have purpose, huh?

Friday, July 27, 2007

5:15 AM 7/27/2008

Good Morning! I am back from my trip to Houston and, other than being in the doghouse, the trip went superbly. Lynley is not a big fan of the traveling, even if I am back by 6:00 PM the same day. I don't know that I learned a lot yesterday but it certainly was a good refresher course. Dr. Russell gave a basic science discussion and described two of the ongoing research projects that are being worked on in the lab at Texas Children's. It wasn't by any means an overview of all of the work that they were doing with neuroblastoma but it certainly was a glimpse into some of their most promising projects. The first was an interesting new approach to solving the N-MYC problem. Just about everybody in neuroblastoma knows about N-MYC in neuroblastoma. It is an indicator of how aggressive a particular child's neuroblastoma is. For example, Sydney was N-MYC amplified. That is not a particularly good sign. In fact, it is a bad indicator. But, what it means is that the genetic material (the DNA) of her neuroblastoma cells included extra copies of the N-MYC gene. So, what? Well, N-MYC is believed to control cell growth. The more N-MYC you have the more aggressive and faster growing your neuroblastoma is. So, what the researcher at Texas Children's did was look at N-MYC and see what else seems to be out of whack when N-MYC is amplified. They found that when N-MYC was amplified MDM-2 was increased as well. When they looked closer at MDM-2 they discovered that it suppresses p53. p53 is a well known to regulate cancer cell death. So, if you loose p53, your cells are resistant to dying i.e. they lose their ability to die. So, there you have it, basic science. Increased N-MYC, increases MDM-2 which decreases p53. The less p53 you have the harder it is to kill neuroblastoma. So, Texas Children's has looked for a drug to suppress MDM-2. The good news is that they have found it in a drug from Roche called Nutlin. The bad news is that the drug is only available for research (not for treating patients) and it does not look like that will change. The other hint of good news is that there is a new version of Nutlin coming that will hopefully be better and there are other pharmaceutical companies that are working on other MDM-2 inhibitors. Now, to make this apply to our kids they have shown that in combination with certain chemotherapies Nutlin makes them up to 10 times more effective. This would mean that we would likely be able to dramatically decrease the amount of chemotherapy that we give to our children while still increasing the effectiveness. This is important science but unfortunately still quite a ways away from being in our children.

The other research presentation she made was interesting as well. I have spoken about it briefly before but they have discovered another surface protein on neuroblastoma. However, I think I have made this entry technical enough for today and I think I will end it here and save that discovery for another day. The great news is that all of the rugrats are fine and they were happy to see their Daddy back home yesterday evening.

It was another good day in purposeville.

Thursday, July 26, 2007

4:56 AM 7/26/2007

This is just a quick update. Today I am off to Houston. There is another Neuroblastoma Parents Group meeting. Heidi Russell will be doing a follow up to last month's topic. Todays presentation she will be discussion the neuroblastoma lab research being done at Texas Children's Cancer Center. I also have a meeting with another family who is planning a goldf tournament in Las Vegas to benefit the CNCF. It ought to be a very busy day. Have a good one.

I have got purpose today!

Wednesday, July 25, 2007

5:31 AM 7/25/2007

Yesterday I was talking with my veterinarian about my plans with Sydney. Does that sound strange? Well, I don't know about you but I think it is a great idea to always run pediatric oncology decisions by your veterinarian. It has always worked for me. I love the perspective of a DVM. This habit started very early on in Sydney's journey. I guess I stumbled onto this benefit because Bob was not only a close friend but also because he was also Kacy and Hogan's (our dogs) doctor. It was handy to have him around. The really interesting thing was that many of the therapies Sydney was on were also common therapies used in animals. Although the regimens were not nearly as complex as they were in neuroblastoma they were the same drugs, used to achieve the same effects. Often, parallels can be drawn. I like talking to Bob because he understands the science and the medicine of Sydney's journey because he is a doctor who has experience with cancer. When I mention a drug combination or treatment that I envision he immediately gets it and we can move quickly into the meat of the matter. I also appreciate his perspective because he does not treat humans. From an emotional standpoint of evaluating options of a child with cancer his emotions are still very raw. He has knowledge but he has never treated a child before so that level of desperation is still there - that feeling of the unknown that keeps you fumbling for new answers. I guess what I am trying to say is that I appreciate his perspective because he has the medical know how but he also feels my desperation as a parent and experiences, first hand, the need to balance reasonable quality of life. It is good for me to bounce ideas off of him. He gets it.

Regardless, Bob and I discussed my newest treatment goals for Sydney. I outlined the many reasons that I wanted Sydney on Accutane right now. I told him about the neuroblastoma stem cell theory that led me to consider administering ongoing sporadic dosing. I reviewed the benefits of using the 14 days of treatment to achieve the proper pharmakinetics while using a larger time period in between to extend the treatment cycle, to balance quality of life issues, and to get us closer to the availability of another retinoid therapy. All in all, he gave me the impression that our decision was reasonable but the exciting part of the conversation for me was delving into what his other ideas were.

One of them that really hit home for me was his use of Omega 3s, specifically DHA. He has been fortifying dogs diet with DHA for many indications and has seen some pretty remarkable results. This has always been an interest of mine because of some research out of Sweden which showed that high doses of DHA had some efficacy in neuroblastoma. Mind you, this was data in Petri dishes and mice but it was still showing some fairly dramatic effects. The trick to get it to work well in kids is all in the dosing. The dosing need to achieve the same levels found to work in mice would be significant - well over 1000 mg per day and that is just DHA. I child would have to swallow a small pharmacy of giant fish oil capsules. Heck, I am a big boy and it takes concentration for me to swallow even one. I can't imagine that it would be easy for Sydney to swallow even one and she is a pro. The interesting thing was learning how he was getting these doses into animals. The actually have a specialized pump which they use to fortify the food. Potentially this could solve the problem of getting it into kids. In adults they have seen few side effects. In fact the side effects they see at the doses we are talking about is diarrhea, fish breath, and occasional stomach upset but relatively minor in comparison to many of the other therapies.

So what does this all mean. Well, it just has me thinking that it might be time to reinvestigate the science of DHA and neuroblastoma. The barrier to entry that I have always seen has been getting the drug into kids. If that can be addressed, it may make it worthwhile to move it forward. Anyway, I thought it was an exciting discussion and it got my brain working. I don't have many options for Sydney and it is worthwhile to consider things such as this - low risk. I know Sydney, like any of us, could probably use much more DHA in her diet just from a nutritional standpoint and it may be worth pushing the envelope a little bit if the science supports it. I won't do it while Sydney is on Accutane just because of how it is metabolized but it may be something to consider at another time. Regardless, it was an interesting and intriguing conversation. I am so glad Sydney has a good veterinarian.

I am amazed at all of the people that share my purpose.

Tuesday, July 24, 2007

5:41 AM 7/24/2007

Good Morning! Well, yesterday Graham woke up still complaining of his tooth hurting but incredibly excited to go to the dentist to get a new toothbrush - ah, simple pleasures. I took the kiddos to school and about the time that I got back to the office I received a message from Lynley stating that Graham had an appointment at 10:00 AM. It was not long before I was back on the road again to pick up the little dudester. Graham was truly excited when I picked him up. If I did not know better I would think that the child did not get out very much but, none the less, he could not wait to go to see the dentist. We hopped into the car and arrived at our destination within minutes. It was not long before Mommy joined us in the waiting room. Graham was soaking it up. Here, he had his Mommy and Daddy all to himself and he was getting ready to see the dentist. What could be better? Even Santa Claus he had to share but this, this, was his moment.

Graham did very well back in the examination room. He watched his mother and I play video games (trying to gain his interest) and he even got to have his very own x-ray. I reviewed the x-ray and as usual I saw signs of neuroblastoma all over it. Of course anytime I look at an x-ray, ct, MRI, MIBG, smudges on the wall, or spots on the floor I see neuroblastoma so it really did not mean very much. The good news was that the dentist actually had some experience looking at an x-ray and she found it to be completely normal - nothing broken! She did do some pushing and pulling on his teeth and she even took a gander up at the roof of his mouth. There is some trauma right behind his upper front teeth which occurred from his fall. He will be sore for a little while. The good news is that the tooth has tightened up and it looks to be okay. We will keep an eye on it at each checkup but she seems to think he will survive. If the tooth and nerve did in fact experience enough trauma to die we will see it over time. His tooth will slowly turn darker. As long as it does not abscess it looks like he will keep it. The good news is that none of this is likely to happen. In the end, Graham got his toothbrush and some quality one on two time with Mommy and Daddy. I think this goes down as a good day in his book.

Sydney had a good day as well. She has not mentioned hip pain in about 48 hours and that is making us all feel a little bit better. It looks like our next round of Accutane is in our very near future.

Today my purpose is safe.

Monday, July 23, 2007

5:27 AM 7/23/2007

Can a weekend be fun and scary? Well, I suppose if one can be then we had one. It all started early Saturday morning with Sydney waking up with hip pain. It is really hard to discern the cause and exactly what was going on. We both took our turns with her trying to get to the bottom of it. I wasn't present for Sydney's discussion with Lynley. I was busy doing some high powered cartoon watching with the other twerps. Lynley came away from the experience sufficiently scared. I watched Sydney pretty closely but I did my best to not let her know. What I noticed was that when we were paying attention to her hips seemed to be hurting much worse than when we weren't watching. She also seemed to come down with clearly life threatening bouts of pain every time our attention was focused on the other two for any long period of time. As the morning progressed she continued to complain of pain but at the same time I would catch her running and jumping through the house without any hint of pain. After watching this for an hour or two I finally pulled her aside and tried to get to the bottom of it. In hindsight, I probably should have let it go but, nonetheless, I just had to find out the answer. Regardless, I had a serious discussion with her. I explained that hip pain was very serious and we need to know the truth about exactly how much it hurt and where. I touched the top of her right hip where she had been grabbing earlier - no pain. I came about 2 inches lower and applied pressure - a minute amount of pressure. She screamed in pain. I knew this was a complete over reaction and led me to believe that she was faking it. I asked her if the other hip hurt and she said 'no.' It did not take long before I had her changing stories and the next time I touched the left leg she screamed in agony as well. She is a horrible over-actor but it still did not make me feel any better. In the end I never really got much out of her. It left me feeling no better and no worse. I still had no idea of whether she had pain or not and I had no idea of the intensity, the onset, or the location. I elected to not mention hip or stomach pain any more and just see what happened.

The day went on with very few mentions of pain and all were confined to the morning. We spent the day doing hard activities. We swam in the pool and rode our bikes around the block. These were hardly the activities of someone who was in pain from cancer boiling in the marrow of her hips or of someone whose hips were being eaten away. I began to feel better but I was still far from satisfied. To tell you how worried we were I elected to delay her start of Accutane because of the pain. First off, we have had enough courses of Accutane to know about the various aches and pains that can come along with that. Sydney's last few courses were full of scares. I wanted to ensure that we got to a satisfactory conclusion of what was going on with her hips before we had to consider Accutane as a source as well. Secondly, I also know that Accutane is antagonistic to chemotherapy and the last thing I wanted to do to her at a potential relapse is make her chemotherapy less effective. Yeah, I know, we are scaredy cats. Regardless, we made the decision and stuck to it. Saturday evening and all day Sunday brought us complete silence on the pain front but we had other surprises.

Yesterday afternoon Graham decided to fall off the diving board. He was not following the rules and he was being a certifiable "kid". Although he knew better, he was dancing on the end of the diving board. He fell and hit his head, mouth first, onto the side of the pool. There was no blood but he did do a good job on his tongue. He almost bit clean through it. Worse yet one of his teeth was knocked in. It is only slightly visible but he very definitely moved one of his front teeth into toward his mouth about a millimeter. This will mean a trip to the dentist today. I don't know what will come of it but I am pretty sure that he will eventually come out of this experience with one tooth less. Thank goodness for baby teeth.

So I guess you are wondering what was so fun about this scary weekend. Hmmmm, good question. There was nothing special but I guess another weekend home with my family doing mundane things is about as good as it gets. We went and played at playland in McDonalds. We swam on no less than 5 occasions. We went bike riding, tree climbing, and bug finding. We even got to watch Daddy get out the chain saw and do some tree trimming. It doesn't get more mundane or more ordinary but it also does not get any better.

This is my purpose and these are my purpii.

Thursday, July 19, 2007

6:06 7/19/2007

I slept completely and fully. You must know that it means that there weren't little neuroblastoma tumors dancing through my head. Sydney's bump on her head has almost completely resolved. In fact, it has cleared so well that I am not even sure that I can still detect it. It is a tremendous sense of relief. I have no qualms about telling you, I was scared out of my gourd. As the time was going on I was becoming more and more worried. I am still amazed that it resolved so quickly but I am completely thankful.

For a moment I can breath deeply and fully. I think I will enjoy it -

With hope and Purpose!

6:31 AM 7/20/2007

Good Morning! Two nights of fully rested sleep in a row. I can't tell you how great that feels. Last night we had the Robertson's over for dinner. I know, I know what you are thinking. What kind of nasty little moves did Truman put on Syndey. What type of juvenile love transpired? Well, believe it or not, last night's soap opera was much more about canine love. You see, the Robertson's are getting ready for yet another grandiose trip to Walt Disney World and Lynley thought it would be a good idea for us to take care of Cleo, their neurotic standard poodle. Last night was a walk through to make sure that Hogan, our idiotic Golden Retriever, and Cleo would get along. As you can probably tell I wasn't to excited about the idea but, heck, I am always up for a free dinner and that was the cost of my week of torture.

As it turns out Hogan took quite a liking to Cleo and they had a blast running around the yard. We were all amazed at Hogan's ability to keep his nose where it did not belong even at a full gallop. I know, disgusting! But still, very impressive! Other than a few missteps into the pool the dogs had a great time and much to my dismay it became quite clear that they would have a good time together over the next week.

The kids too had a blast. After dinner we all made our way back out onto the porch. The kids stripped down and made a beeline for the pool. For the next hour the parents sat around the pool and chatted while the kids played in the water. Sydney followed Truman around like a little puppy dog. It was almost as disgusting as the scene that we had viewed earlier - at least to me. It is clear that Sydney has not lost her fancy for Truman. Thankfully the boy has grown a bit older. He is too young to appreciate girls and too old to find much interest in someone a few years his junior. At least I had that going for me. Regardless, I still had to sit through and listen as she crooned "Truman" following him around the pool. It was an awful display of crushdom. Finally, however, the evening came to an end.

Oh joy, I had the opportunity to watch my dog sniff after one Robertson and my daughter salivate after another. Just think, I get to watch this behavior for the next week. At least, my daughter will be safe from Truman's lecherous non chalance.

Fine! I admit it. I had fun.

My purpii bring me joy.

Wednesday, July 18, 2007

5:22 AM 7/18/2007

Yesterday was an incredibly emotional day. Paul's funeral service was incredible. I know that sounds strange but it really was beautiful. Nearly all of the men dawned Hawaiian shirts and the women were colorful as well. It was truly a celebration of his life. In some ways it was unlike any other funeral I have ever been to. Other than for introductions, the only speakers were Terrill and Leigh and they did an incredible job giving us insight into Paul, their journey, and what they learned from this amazing little boy. Being a father of a child with neuroblastoma I was amazed by Terrill's ability to share with the congregation. I can't imagine being anything but a puddle of mush much less standing in front of a group of hundreds to speak about the child I just lost. I would be a wreck and yet he did it with such calm dignity. I felt all of his words, some funny and other more serious, and once again I was left with a since of admiration for this family. Leigh took us through a bible verse and what it meant to her and their family. I have never watched someone with so much grace as she let us follow her through the words and story. Her reflection and insight were clear as day and it became more and more apparent what an incredible family this was. As you probably know of me by now, I believe in God, am comforted by religion , and believe in the power of prayer, but I am not a particularly religious person. This service gave me some insight that I had never seen before and Terrill and Leigh, once again, schooled me on the power of perspective and I walked away from another meeting with the Saxon's feeling enlightened and whole. It was a truly beautiful and touching ceremony and I am so glad that they took the opportunity to share with us. I know, it hardly seems like I am talking about a funeral. It truly was a celebration of life. I forgot who said it but it is true as day - there are too few Saxon's in this world.

As a side note to the service, I was delighted to see Dr. Giselle Sholler there. For those of you who don't know her, this is the oncologist from Vermont that took such good care of Paul when all of his options seemed to be gone. Paul participated on her Nifurtimox trial and she became a large part of his treatment and their lives. Giselle spoke with them often, especially during the last few weeks of Paul's life. It was touching to see her travel all of the way from Vermont to be there and it was a clear indication of her commitment to our kids and the bonds that we have with our children's oncologists. We are a very unique group of families, physicians, caregivers and friends and it is unlike anything I have ever experienced. For being brought together by something so evil it is amazing how incredibly beautiful our bonds are. We are a family.

I know many of you are waiting to hear an update on the mysterious bump on top of Sydney's head. Trust me, it has not left my mind either and I spent a pretty sleepless night thinking about it. In fact, I don't actually remember sleeping last night although I am quite certain that I did at some point. I spent the night tossing and turning and thinking about it. It is not clearly neuroblastoma. If it were you can bet that I would not be sitting here. It is close enough to a lump that it has us significantly scared. It is about the size of a dime. I believe it is larger than yesterday but Lynley thinks it is about the same. We have considered drawing a line around it but were wanting to spare Sydney the embarrassment of having a circle drawn on her head. Regardless, it is about the size of a dime. It is not itchy and it does not cause her pain. At this point it is more of a bump and less of a lump but still no good. The only saving grace is that the center of the bump has a bit of a different texture. A small area on top of the bump (about the side of a pencil eraser) has more of a scaly texture. The color is nearly the same as her scalp and it takes quite a bit of concentration to make out this area. This is really the only saving grace. In a way, it is this characteristic that shares its similarities with a bug bite. I just wish it were reddened or itchy - or both. In short, it is not clearly anything. It is small enough to be a bug bite but unlike one enough that it could be something more sinister. We will see what this morning holds and make more decisions from there but it would not surprise me if we ended up at Cook's today.

My heart is skipping beats again and my breaths feel shallow.

My purpose is clear - the answers are not.

Tuesday, July 17, 2007

5:20 AM 7/17/2007

Today Lynley and I will be traveling to Waco for Paul's funeral. It is a bit of a drive but one we would not miss for the world. For Sydney, Graham, and Ainsley it will be a normal day of school. The kids are doing well although Sydney continues to look like she has been through the torture chamber. I am continually amazed by the battle scars and bug bites that appear on her body on a daily basis. She is literally covered from head to toe. It does not seem to matter how much or what kind of bug spray that we put on her but she is always covered in bites. She must be quite the delicacy for a mosquito. Avon Skin So Soft seems to work the best at keeping the mosquitoes at bay but nothing seems to have the permanence that she needs. The scary part is the she has a small bump on her head. It is about the size of a bug bite, much smaller than a dime, but we aren't quite sure what it is. That is always an alarming thing for a parent of a child that has neuroblastoma. Tumor's can often form on the skull. This, we are hoping, is much too small and much too like a bug bite. However, in light of all of the bad news we have had lately we just can never be sure. For the time being we are just going to pray that it is nothing and hopefully it will go away like the others eventually do.

Well I had best be off. A good portion of our day will be spent driving today and I need to get as much done as possible before. If you have never prayed for a bug bite before this might be a great time to try one out.

With hope and purpose.

Monday, July 16, 2007

4:51 AM 7/16/2007

Paul Saxon has earned his angel wings. I think everyone that knows Sydney certainly knows of Paul and his family. They were a fixture in our lives from nearly the very moment of Sydney's diagnosis. In fact it was Terrill, Paul's dad, who was the first person I had ever met that had a child with neuroblastoma. At the time, they were a huge source of hope for our family. It was Terrill that explained to me in those first few weeks after diagnosis that life would never be normal again but that our lives would take on a new normal. He told me that we would be okay. That we would make it through. It was that support and those words that gave me the strength to plug on and to care for my family. Much came from that first conversation up on the floor of Cook's and they are memories that will last with me forever.

Paul truly touched us. We did not see a lot of he and his family but they always felt particularly close. And, on those occasions when we did see him, he always made a lasting impression. We remembered all of his milestones because they were always a sign of great hope and happiness for our family. It wasn't long into Sydney's diagnosis that Paul had his break out party from stem cell transplant. I remember him dawning the doors almost in shock from all of the faces gathered around him. As I stood in the background along the wall in the oncology unit it gave me great comfort. Here he was standing, renewed and pure. With everything we were going through we could make it. It was possible to come out of this nightmare beautiful and whole. "Beautiful and whole" that is how he made me feel that day.

There were many other times that we crossed paths on our journey. I remember vividly meeting them up in the entry way at Cook's the night before they took their Lunch for Life dream vacation to Walt Disney World. He was so giddy - standing there with his brother. I still remember the trip to Toys R' Us to pick out the movies and toys for his trip and if you gave me a moment I could tell you what each and every one of them were. I am still sorry that I could not find more Teenage Mutant Ninja Turtle movies. I also recall seeing him on countless occasions in and out of the clinic. I clearly remember being so incredibly impressed by his skills as an artist. To this day I have never seen someone so keen with a pencil as this little boy. Visions of his life like drawings of dolphins swim through my head as though they were real. Believe it or not, I will even watch NASCAR (and secretly enjoy it) because of this little boy. It is not that I like car racing but because it brought so much joy to this little boy and his family. And, to this day, every time that I walk through Cook's, I have been prone to lose change in various places around the hospital just in hopes that Paul would find it. That was one of his favorite pastimes and one that I remember from being a little boy myself. Yes, in a strange way, Paul is a part of our family, part of who we are.

Much of our love for Paul came through my relationship with his father. I can't tell you how many times he and I chatted over the phone or via email. We were always looking for a cure - the next idea. Although Sydney and Paul were never parallel in treatment, Terrill and I always found time to bounce ideas off of each other. I just wish I could have found the answer for them. In some ways this feels like my own failure. I wanted so badly to have the right answers for them but I just did not have them. It is kids like Paul and their memory that keeps me motivated everyday to work harder and faster to find the answers.

I can't make sense of this. Heck, it never does. But, what I can tell you is that Paul will live on in my heart. He will be a constant companion and a constant reminder of what is important in life. He will remind me to stay diligent so that we can help as many kids as we can. One day we will find a cure for this disease and we will find it faster because of him. It is kids like this that remind us of what is important.

Please pray for this family. They need our strength.

Paul is my purpose, too.

Friday, July 13, 2007

5:02 AM 7/13/2007

Good Morning! I am finally starting to recover and it is nice. Yesterday was the first day in as long as I can remember which was not jam packed with meetings and rushing from one place to another. The kids were all back in school and life was once again back to a state of normalcy. It was a typical day. It was perfect. I worked most of the day from home and picked up the kids from school as usual. It was completely mundane. We went from the school to the bank and from the bank to the grocery store. After some serious domestic errand running we made our way home. For the next few hours we spent our time playing in the pool. The kiddos had a great time. I am amazed at how well Graham and Sydney are swimming. Sydney has gone from a fledgling doggy paddler to diving for rings in the bottom of the pool in just a few short months. Graham on the other hand is still kept a float by a buoyant bathing suit but is showing all of the signs of being able to swim on his own. He is quite comfortable scooting across the top of the water with his goggles and snorkel. He has no fear of stopping to dive down into the water and loves to be tossed through the air. Ainsley on the other hand is becoming more and more comfortable with the water everyday but is still a bit anxious and chooses to hang on to the side of the pool or on one of us. Regardless, we had a great time in the pool.

I neglected to mention that Sydney went to the clinic early on Tuesday morning. She was due for her quarterly bloodletting for the vaccine trial. As a side note Lynley mentioned to one of the doctors there that I was interested in putting Sydney back on Accutane on a modified schedule. The next thing I knew we had our iPledge booklet and a script for our first 14 day round of Accutane. I really wish they had put up at least a little fight but I think we all have a pretty clear picture of what we are dealing with. Regardless, we will be starting her on it again pretty soon. I have to brush up on all of my Accutane administration notes - let's see, Aquafor on the cheeks, vitamin E oil on the lips, what blood tests did I need again. Oh well, it will come back to me soon enough.

Well there you have it. The Simple Life Dungan style.

It is an old twist on purpose.

Thursday, July 12, 2007

6:08 7/12/2007

Yesterday was a great day. It won't shock you to know that it was also busy. At about 7:30 I left to take the kids to school. This trip was a bit different. This time I only dropped off two. Yesterday, Sydney would spend the entire day with me. She and I along with several other families were participating in a video shoot for the CNCF. The shoot was at Children's Medical Center of Dallas and we were supposed to spend the better part of two days on this adventure. By the time we arrived the shoot had already began. There was already a crew of about 7 making their ways through the halls at the clinic. The first few shots were mostly laboratory in nature but it was not long before our child stars took the stage. First was Alaina who was demonstrating our favorite pastime (sarcasm), life in the infusion room. She was a great actor and it was not long before she had them eating out of their hands. She was the perfect little lady and quite patient with all of the people scrambling around her. The next few shots were a little less medical but none the less part of our daily lives. Grayson, who was just days out of the ICU and his second of two transplants, was filmed while he played quietly on the couch. Sydney's shot was next and she was filmed doing one of the things that she does best, running into her Daddy's arms. After this, Sydney and I made our way outside to the playground while everyone spent time setting up the next shot. It was not long before we were on our way upstairs and waiting for Dr. Podeszwa. Unfortunately, he was busy with patients and we elected to opt for an early lunch before shooting the next scene.

The afternoon at the hospital would go very quickly. David nailed his complicated lines - "I believe we can bring change." and within minutes we were scurrying off to our next location. The next shot was one of the most surprising that, had we planned it, there would have been no chance to pull it off. However, Elexa just happened to be scheduled for an MIBG scan at that very moment. As she was being anesthetized we squished in another shot of some MRI films and by the time we had that wrapped up it was time for the crew to go back to shoot Alexa. Sydney and I elected to make another visit to the playground where we found Alaina and her mom. Sydney and Alaina had a wonderful time playing together and before we new it, it was time to get back to work.

I really can't tell you how smoothly this shoot went. Here it was half way through day 1 and we had already completed all of our hospital scenes. As a result, we decided to head over to the Podeszwa's to shoot some of our day 2 scenes. There we saw all of the Podeszwa's committed to film. It was quite fun and the kids had a spectacular time. This session went quite quickly as well and by about 5:00 PM we had wrapped up shooting, not only for the day, but in its entirety. It was an incredibly successful shoot and the only thing that I was truly less than successful at was getting Sydney to leave. I honestly don't remember the last time she had so much fun. In the end we decided to stay for dinner and ice cream and then at about 8:00 PM we decided to make our way back home. By then Sydney was asleep. I gently carried her upstairs, put her into her jammies, and kissed her forehead good night.

It was a long and busy day but I wish everyday could be just like that.

I had a perfect day and mix of purpose.

Wednesday, July 11, 2007

6:25 AM 7/11/2007

Well, well, well. Here I find myself on another flight back home. This trip has been one sleepless adventure and I don't remember ever being so tired. I am sure I had much more sleep deprived times in the hospital with Sydney and I guess I am just out of practice. Regardless, I have reached the limit on my ability to function - at least rationally. I had an incredible time. It was a jam packed adventure but I am anxious to get home and be with my family. Lynley has grounded me from travel any time soon and that suits me just fine. I am simply not made out for this jet set life. The only problem with this plan is that I will be heading out of town in just three short weeks for a CNCF board meeting. Quite frankly, if I wanted to (which I don't and I will not), there are places I could be every week for the rest of this year. As important as I know many of these trips are, I don't want to be away from my family. I miss my wife, my kids, and my normal average chaos around the house. Life is hard when you don't have a wife around to tell you what to do. That life is sleep deprived enough without all of this jet setting.

So, why did I make this trip. Well, it was important. I had to get up to speed on many of the issues on this project of humanizing the 3F8 antibody and I had to do it quickly. Honestly, I came into this a bit skeptical but, after hours of meeting and studying, I am pretty firmly on board with the idea. Research has been kind of funny the more that I have gotten involved and learned about the process. I have always fallen in love with whomever I talked with last but have learned that there is always more to the story. In this case, it is a subject that I know a fair amount about - antibodies. Given this experience, I went in with a pretty clear picture of what to ask. I can already envision and understand both sides of the coin and can make most of the arguments for myself. I know I still received a fairly biased point of view from Sloan but since I understand both sides I am able to strip away the bias and make a decision for myself. I think this is one reason why some families at Sloan are skeptical of me. I don't just believe in Sloan or the antibody itself. I also believe in the COG, the NANT, and a myriad of investigators from all over the world. Kids survive with all kinds of therapies from all kinds of institutions, being cared for by all kinds of different researchers. I agree that some places are better than others but there is no absolute answer and all of the "good" science does not happen at a single institution. With that being said, I can tell you that I am firmly behind this vision at Sloan and I think it is an important endeavor. I believe it will be one of several things that will impact our kids lives (kids of the NB world) and, for that reason, it is something I am willing to commit myself to supporting. However, it will not be the only great project that I will support and see through fruition this year. There are other great things happening that are likely to have as important of an impact.

So, why is this important? What in the H - E double hockey sticks am I talking about. Why I do I think humanizing this antibody is important? Don't we already have one? Why do we need it? As I have said before, the 3F8 is a murine (mostly mouse, about 75%) antibody. Because of this it has some theoretical advantages but the point is that it is a relatively old antibody with 20 years of experience. We know that 3F8 effectively kills neuroblastoma cells in kids and we also have a pretty good indication that it does it pretty effectively. The belief at Sloan is that it does it better than any of the other antibodies because it stays attached to the neuroblastoma cell for longer than the other antibodies. This is called the "come off" rate. You may remember me saying that that the humanized and chimeric antibodies live longer in kids than the 3F8. In other words, when kids are being injected with antibodies they stay alive and active within the kids bodies longer than 3F8 does. You might think this would be better. Ordinarily it would be but, the issue is more complex. It also depends on the stickiness of the antibody to the NB cell. Although the 3F8 may not live as long in the human body as the other antibodies, Sloan believes that it stays attached to the NB cell for much longer. This "stickiness" to the NB cell is what allows the immune system, those killer cells, to organize and kill the neuroblastoma cell. Basically, it stays attached to the NB cell long enough to kill it. Is this data published? No, of course I asked. But this is Sloan's reasoning for why they like their antibody better.

Given these "facts" why wouldn't everybody use 3F8 and keep taking the antibody indefinitely? Well, the 3F8 also has some problems. It is mostly mouse, remember, and the problem is that our human bodies become "allergic" to it more quickly and then our bodies develop our own antibody to mount a defense against it. Our bodies eventually start to kill the 3F8 faster and faster until it is virtually useless. This is the HAMA (Human Anti Mouse Antibody) response that I have talked about so often. So, even though a child could be benefiting from the treatment they can no longer have the antibody because it will cease doing any good. It will be killed before it can do its job on the NB cell. We had an effective treatment but we can no longer use it because it is too, well, mousy. This begs the question. How do we prevent this HAMA?

Well, first off they do it initially by taking advantage of the suppressed immune systems of these kiddos. These are the suppressed immune systems that we have achieved through the massive amounts of chemo they have endured during induction and sometimes transplant. So, yes, massive amounts of chemo will do it. However, that isn't a really great idea for these kids to give them more massive amounts of chemo once they have HAMA'd. That would come with significant risks and toxicities. What else can we do? And, this is where humanizing the antibody comes in. We make it more and more human so the body won't be as likely to develop a HAMA. We engineer the antibody so that the body will like it more. We replace parts of it with human parts while trying to leave the parts that make it so sticky. This is the process of humanizing the antibody. This has several advantages. Now we can potentially give the antibody to kids who would have HAMA'd early on. I have often said that it is my belief that we need long term continuous exposure to the antibody to work best. Humanizing the antibody will ensure that kids can receive enough exposure to the antibody without developing an antibody response such as the HAMA. Another benefit of humanizing the antibody is for kids who are not significantly immunosuppressed but heavily pretreated. They no longer require these high dose preparatory regimens of chemo to prepare them for antibody therapy. This goes beyond just preparation to prevent a HAMA. Ultimately it helps reduce the toxicity of treatment because children no longer need as much chemo to continue fighting this disease. They have more energy to fight. Kids could be treated for years without any chemotherapy. This will help the children that have relapsed maintain disease control for longer time periods. Their bodies will not wear out as quickly. Sloan states (and I know of examples) that they are maintaining disease control for longer and longer and patients are now surviving up to 10 years after relapse. This means time, which we can use to search for cures for these kids. In my opinion, no, this antibody is not the cure for cancer. But, it is a key player in buying time until the silver bullet can be found. Thankfully there are many promising therapies on the horizon we just need more time.

But aside from the reasons mentioned above there are many other benefits to humanizing this antibody. Much of which can't be readily seen by an amateur antibody lover such as myself can still be explained. And, I did get a glimpse into some of the possibilities. For instance, by genetically engineering this antibody from the ground up we now have the opportunity to muck with other aspects of the antibody. For instance, We can add elements to make it live longer. We can even make the other side of the antibody sexier. In this way, it will be more attractive to all of those big manly killer cells that we want be attracted to kill the NB cell. Humanizing it also makes it easier for us to "grow up" the antibody in hamster choke(?) cells. This means we can grow the antibody in larger volumes. This helps deal with some of the current drug supply issues. See, there are many good reasons for this antibody and it isn't just what we see on the surface. This is the body of theoretical, anecdotal, and belief in what Dr. Cheung is telling the truth that makes me believe in this project. I have to put my finger on what I know and makes sense and make a decision. In this world, you have to pick and choose who you are going to believe in and I can say that Dr. Cheung is one (of several) of the researchers that I believe in.

I have a rule for that. We share purpose!

Monday, July 9, 2007

2:02 AM 7/9/2007

So, it is 2:00 AM and I just arrived at my hotel room in New York. Talk about a whirlwind tour. With a delayed flight and a switch in airports I have finally made it to my bed. I can't tell you a whole lot because I must get to bed before the start of a full day of meetings tomorrow. But, what I can tell you is that the Dungan Five had a spectacular weekend together. We swam in the pool and played most of the time but, as usual, Lynley had enough chores laid out for us snotty nosed little brats to remind us where we ranked in the household. I was hoping when she would slow down in her old age but, apparently, I was quite clearly wrong.

Tomorrow will be a very interesting day. I have several meetings on a myriad of subjects. The day will begin with some impromptu meetings with a few families up at Sloan. Then, of course, I will have to deliver pictures and presents to some of Sydney's favorite nurses. Then, at 11:00 AM, I have a meeting with Nai-Kong Cheung himself. I have really prepared myself well for this meeting and I am really looking forward to it. Hopefully this will give me a keener insight into his vision of a humanized 3F8 and, quite frankly, I am also interested in pushing the envelope a bit on the 8H9. I know, I know I am throwing a lot of acronyms at you but bear with me. You know that when I have enough time I will go through all of the grueling details and you will wish I had never opened my mouth. Let's just say that the first is a helpful utility, a modernized weapon against neuroblastoma. The latter has the potential, for many reasons, to be something very, very special. If it proves itself as well with systemic disease as well as it did in central nervous system relapses in sustaining remissions then we may very well be preventing relapses for longer than ever before. Some have even used the "c" word (cure), although, I think everyone is still very gun shy about saying it out loud. For good reason. There is a long way to go but it is certainly one of the more promising revelations that I have heard this year.

Anyway, after that I will be having lunch with another NB parent who is one of the key players of the Parent's NB Handbook and we are going to see what we can to keep that moving along and into parents hands everywhere. The remainder of the afternoon will be spent talking to another family who is making some tough decisions, a group interested in Lunch for Life, and finally a large parents meeting to discuss the possibility of funding the humanized antibody. After that I am sure there will be discussions into the wee hours and then it will be back to my hotel for a few hours of sleep before I am up at 4:00 AM to catch a flight home. Yes, it is a whirl wind.

Now, leave me alone. I have got to get some sleep.

Much purpose awaits.

Friday, July 6, 2007

6:04 AM 7/6/2007

Today my blushing bride adds another sparkly to her tutu. Yes, Lynley's birthday is today. I won't tell you how old she is because I am quite sure that would get me into some severe trouble. Let's just say that she must be the age of fine wine. Is that safe? Anyway, we will have to find something fun for all of us to do. I think she probably just wants a break for her birthday. Unfortunately, around the homefront we will be focusing on Ainsley today. The little bundle of twerptitude came home yesterday morning with a fever around 103 degrees. It took a while for her fever to respond to Tylenol but she seemed to tolerate this virus pretty well. At first glance it appears to be the very same virus that struck Graham earlier in the week.

Things for me are going well although busy as usual. Today I am working on getting some flight arrangements to New York for Monday to meet with a group of parents about humanizing the 3F8. I sure wish they would give us a little more notice about these meetings. Regardless, it ought to be very interesting. Right now I am planning on flying in on Monday morning and out on Tuesday morning. This project to Humanize the 3F8 has really taken off. There are many families interested in the process. It sure seems to hold a lot of hope for many. I have written about some of the benefits before. There are just many, many more questions left to ask.

Well, I had best be off. As usual there is a lot to be done and with Ainsley at home sick there will be fewer hours to do it in.

With hope and purpose.

Thursday, July 5, 2007

6:25 AM 7/5/2007

Well, this is a different way to start a diary entry but I jut could not help myself. Yes, for the second year in a row the Dungan twerps won the "Most Patriotic" award at the local Fourth of July parade. A daddy can only be so proud. Of course, I have to be honest that I wasn't so supportive when I was outside at 7:00 AM on a holiday cutting and taping individual strips of paper streamers to the bottom of their Escalade. None the less, it made for a moment of pride as we accepted our prize, a dinner for three at a local eatery. It wasn't all roses however, midway through the parade route (a loop around the park) Sydney somehow became gas pedal incompetent and I had to push them up hill the last leg of the loop. It wasn't until later when Graham was driving that I discovered that the Escalade was perfectly fine and that I had pushed it around for nothing. Regardless, we had a good time and it made for a great holiday morning.

Believe it or not I am still recovering from last week. The funny thing is that Pat is really the one that does all of the work. I pretty much just stand around and socialize. I would say that I am the beauty and she is the brains but everyone pretty much knows that I would not qualify for either one of those titles. Pat simply does incredible work putting on the conference and she does it so well that everyone has time to do what they came to do in the first place - meet other families, talk to the experts, and learn about neuroblastoma.

Some of the most interesting things to come out of the conference were actually unplanned. Although the speakers did an excellent job of presenting all that there is about neuroblastoma, there were some important "facts" that came to light. One of the most interesting was a debate over the survival curves presented by Sloan Kettering as opposed to the rest of the COG. At first we were all led to believe that Sloan enjoyed a 60% survival rate whereas as the COG only provided a 40%+ rate of survival. These statistics have been debated for years. I must admit, although I should have known better, I felt a little duped by these statistics. As it turns out, these two statistics that everyone tries to compare aren't actually the same. In fact they are entirely different. The results of the MSKCC's experience was not exactly comparable with the COG information as MSKCC reported Progression Free Survival vs. Event Free Survival.

Progression Free Survival (MSKCC) - showed only those patients who did not have progressed NB. If, for example, a patient had significant liver, kidney or other toxicities, they were not represented in the MSKCC number (an event does not always equal progression of NB disease)... and thus, the number could be deemed a bit "optimistic" if you will - thus the 60% vs. the 40% or so (note, I am pulling that from my head... not referencing any slides) reported by COG for Stage 4, N-myc amplified did not tell the whole story.

Event Free Survival (COG) - showed all patients enrolled... as any toxicity which would result in pulling a child from a protocol would be considered an event and thus the results would be lower.

In the end I don't really know that there is any difference between the Sloan survival curves and that of the rest of the COG. By the time that you factor in all of the variables that make the two statistics different I think you might find them to be eerily similar. As always it just is not clear. There is no absolute answer. We, as parents, just have to make our best decisions and hope for the best.

This is what purpose is all about.

6:25 AM 7/5/2007

Well, this is a different way to start a diary entry but I jut could not help myself. Yes, for the second year in a row the Dungan twerps won the "Most Patriotic" award at the local Fourth of July parade. A daddy can only be so proud. Of course, I have to be honest that I wasn't so supportive when I was outside at 7:00 AM on a holiday cutting and taping individual strips of paper streamers to the bottom of their Escalade. None the less, it made for a moment of pride as we accepted our prize, a dinner for three at a local eatery. It wasn't all roses however, midway through the parade route (a loop around the park) Sydney somehow became gas pedal incompetent and I had to push them up hill the last leg of the loop. It wasn't until later when Graham was driving that I discovered that the Escalade was perfectly fine and that I had pushed it around for nothing. Regardless, we had a good time and it made for a great holiday morning.

Believe it or not I am still recovering from last week. The funny thing is that Pat is really the one that does all of the work. I pretty much just stand around and socialize. I would say that I am the beauty and she is the brains but everyone pretty much knows that I would not qualify for either one of those titles. Pat simply does incredible work putting on the conference and she does it so well that everyone has time to do what they came to do in the first place - meet other families, talk to the experts, and learn about neuroblastoma.

Some of the most interesting things to come out of the conference were actually unplanned. Although the speakers did an excellent job of presenting all that there is about neuroblastoma, there were some important "facts" that came to light. One of the most interesting was a debate over the survival curves presented by Sloan Kettering as opposed to the rest of the COG. At first we were all led to believe that Sloan enjoyed a 60% survival rate whereas as the COG only provided a 40%+ rate of survival. These statistics have been debated for years. I must admit, although I should have known better, I felt a little duped by these statistics. As it turns out, these two statistics that everyone tries to compare aren't actually the same. In fact they are entirely different. The results of the MSKCC's experience was not exactly comparable with the COG information as MSKCC reported Progression Free Survival vs. Event Free Survival.

Progression Free Survival (MSKCC) - showed only those patients who did not have progressed NB. If, for example, a patient had significant liver, kidney or other toxicities, they were not represented in the MSKCC number (an event does not always equal progression of NB disease)... and thus, the number could be deemed a bit "optimistic" if you will - thus the 60% vs. the 40% or so (note, I am pulling that from my head... not referencing any slides) reported by COG for Stage 4, N-myc amplified did not tell the whole story.

Event Free Survival (COG) - showed all patients enrolled... as any toxicity which would result in pulling a child from a protocol would be considered an event and thus the results would be lower.

In the end I don't really know that there is any difference between the Sloan survival curves and that of the rest of the COG. By the time that you factor in all of the variables that make the two statistics different I think you might find them to be eerily similar. As always it just is not clear. There is no absolute answer. We, as parents, just have to make our best decisions and hope for the best.

This is what purpose is all about.

Tuesday, July 3, 2007

7:58 AM 7/3/2007

This is just a quick update to let everyone know that we are okay. Graham came home from school with a 103.4 degree fever yesterday morning and it has been chaos ever since. Thankfully the doctor thinks we are just battling something viral. He seems to be okay. In fact, today he is at home with me and happily playing and watching television. He seems perfectly fine and then we will be surprised by some diarrhea or another fever. I am hoping he will just rest and allow his body to recover.

There is still a mountain of things to discuss regarding the last couple of weeks but I find myself running again this morning. Perhaps, tomorrow.

For now, there is purpose.

Monday, July 2, 2007

6:16 AM 7/2/2007

Hold on, let's back up a minute. This entry actually started yesterday.

Well, here I sit on a plane in Lubbock, Texas of all places. It seems some thunderstorms have sent us on a little adventure. Although I miss Lynley and the kids this is okay, too. I needed the time to decompress. The last 4 days have been incredible and I really don't even know where to begin. It was one of the most meaningful experiences thus far in our journey. It was also a bit different this time. Okay, it was a lot different. But, the difference was more with me than with anything else. Now, when I go to these conferences it is far less about learning new things about neuroblastoma and far more about seeing old friends and meeting a few new ones. Neuroblastoma sure seems to bring together a group of incredible people.

I don't want to mislead. The conference was jam packed with information. In fact, I had some concerns that the information might be too technical. I thought we may have gone over the top but it did not take too many interviews before I realized that it was an appropriate level for most. I can tell you that the questions were far more sophisticated and I was extremely happy to see some issues finally come to light. One of my favorite presentations was Dr. Reynolds examination on "How to interpret data?" I must admit that I learned quite a bit and with his information I will be far more qualified to analyze data from various research projects with much more conference in the future. He shed light on some of the problems in the research world. Most importantly, I have learned how to discern the difference between data that is qualitative and meaningful and that which needs to be scrutinized more carefully. Personally, it was my favorite presentation but, keep in mind, I had already seen most of the others at another time and place.

In going into this conference we really made an effort to ensure parents received an unbiased view of all of their options. The trick was that we needed to bring the issues to light without being antagonistic. There were several of us that kept a pretty steady flow of questions to ensure that we could bring to light as many of these issues as possible. There aren't absolute answers to 90% of the issues that we discuss in neuroblastoma. However, to be effective advocates for our children we need to be aware of both sides of the decisions that lie before us. I can't tell you how many times I am asked if I think whether course of action "a" or "b" would be better for a child. I always answer with "Which side do you want me to be on because I can argue either side?" There aren't any absolute answers but, in the same sense, if you know the facts, there often aren't any wrong ones either.

I spent hours discussing many issues outside of the confines of the conference hall doors (Yes, it appears there may have been a bar close by) and it was in these discussions that I really learned the most. I spent hours talking to many of the researchers. While at a neuroblastoma conference, I generally don't talk to the researchers about Sydney other than to say that she is fine, when the ask. At most of the conferences that I attend this type of discussion would always be inappropriate. However, at this conference, the parents' conference, it is fair game. At about 2:00 AM on Thursday night I found myself in a deep discussion with Dr. Reynolds about Sydney and what I envisioned for her future. He gave me the opportunity to lay out my arguments and to reveal my plan of action. We discussed the various benefits and risks involved. We discussed many issues but, ultimately, I wanted his opinion as to whether my plan was reasonable. Did it make sense? Was this what he would consider for his child? Like me, he had some perfect world preferences (my plan A) but we both had to operate in the world in which we live. And so, plan B, the one I discussed last week in my diary was put into motion. I can't say that my decision is right for any other child but I can say with some level of assurance that it is reasonable for Sydney and, most likely, in her best interest.

It appears that I could make a pretty good case to put Sydney on a modified schedule of Accutane. I was glad to hear that Dr. Reynolds felt that my schedule of 14 days on/42 days (or more) off would accomplish what I wanted. Additionally, the reasoning behind my dosing schedule and my argument for a retinoid "tune-up" holds water. This is not a long term decision for Sydney but an acceptable option until plan A becomes available. I could have argued for plan A right now. I could beg and plead and whine for plan A but I honestly believe that doing plan B first may, in effect, enhance plan A.

It is fun to be cryptic.

Well, I am finally back up in the air and on my way back home and judging from the dark clouds before us it is time to get ready to land.

My purpii await.