Thursday, March 6, 2008

5:20 AM 3/6/2008

Wow! I have so much that I could write about today. I guess I should probably start with the kiddos. They are doing wonderfully. From the standpoint of kiddo-dom I really could not be happier. Each is doing well at school and they all seem to be getting along really well together.

The weather has been relatively nice the last couple of days and they have remained glued to the outside. It also seems that they have developed some allergy to the ground. Rarely, if ever, will you see them on the ground. They are often found in the trees, scaling the fences around the yard, trying to sneak onto the neighbor's roof (yes, you read that correctly), playing upstairs in the playhouse, or jumping on the trampoline. Ainsley is the most shocking who at two can climb, scale, sneak, and jump with the best of them. They make up great games and have just a wonderful time together. Yesterday I snuck up on them to take a picture while they were playing ring-around-the-rosy on the trampoline. It isn't that great of a picture but it gives you some idea of how close they are. Also, note Sydney's hair. It is so fine that the static electricity from the kids socks on the trampoline makes her hair stand on end. You can't see the top well but I can assure you she is well framed in a halo of hair.

Like I said, it really isn't that great of a picture but the fact that they play together like this just makes my heart so warm. Think of it as my feel good picture of the day.

My mind is still reeling from the NANT meeting last week. You may remember from a year ago that I made a presentation to the NANT. I outlined several areas of concern from the perspective of parents and then lined out 9 suggestions of ways to address these perceptions. One of my suggestions was the creation of a NANT Advisory Council that was formed by those most effected by neuroblastoma and relapsed and refractory disease. I am happy to announce that they officially endorsed the group and have made huge strides to communicate and to meet the challenges we offered. In fact, they have done so much I even had to sign a confidentiality agreement regarding the meetings. For that reason I can't go into many specifics. Short of a cure, I could not have been happier. There are many new drugs in the pipeline and there are several new combinations becoming available. In fact there is only one new single agent trial that has been added and that was a drug that had produced complete remissions in adults. All of the other trials are multi-agent trials and they have continued with a meaningful effort towards creating a chemotherapy backbone suitable for treating kids with disease. They are clearly making every effort to make the current trials as efficacious as possible for our kids.

There are often two misconceptions regarding the NANT, both of which stem primarily from the emotion of having your child's life on the line. First is the realization of the incredible amount of work that the NANT puts into preclinical research. The second is that they don't move fast enough for our children. Many parents and families are frustrated by the pace of the NANT because they spend so much time studying drugs before they actually put them into kids. They have tremendously rigorous standards that drugs are held up to before they are even considered to go into kids. Many people have assumed that they are just enamored by the science - that they don't care about the kids. They have assumed that the researchers really only care about the science and not speeding the cure for the kids who are here now. Truth be known, it could not be further from the truth. The NANT has made a huge commitment to speed up research. In fact this is the standard that they hold up nearly every decision to. I.e. Is the fastest way we can possibly answer this research question? To do that they have decided to hold all treatments to as high standards as they possibly could before allowing the treatments into kids. They did this because of experience. They have all been frustrated by the amount of treatments that have gone into kids and have ultimately failed. Not only is this a waste of financial resources but it is also an incredible waste of time. It takes so much time (years) and money to put drugs through phase 1 and phase 2 trials that they have committed to only put the drugs with the absolute most potential through. They don't want to waste their time on the "maybes" They want to be as sure as they possibly can be before putting agents through trial. Furthermore, the more trials that are available the longer it takes for each one, individually, to close. There has to be a balance. It is for these reasons that they hold drugs to such rigorous standards and ultimately why the process seems so slow.

In short, I was very pleased at the NANT meeting. Unfortunately, I did not see the cure to neuroblastoma but I did come away with far deeper understanding of the problems we face. I also saw some very promising treatments in the NANT and there are much more on the horizon. There is hope and there are many very dedicated people fighting to find a cure as quickly as they possibly can.

There are many that share our purpose.

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