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.