Monday, April 21, 2008

A Purposeful Walk

Good morning! First off, I want to thank everyone for coming out and supporting us at the 1st Annual Neuroblastoma Walk. I was really blown away. In the end, we had a little over 250 people show up at the event and they raised just over $15,000.00. I was blown away by the level of participation and so incredibly thankful for all of those that showed up. Milling around in the crowd were also 12 families that had children with neuroblastoma and I even had the privilege of meeting an 18 year survivor of stage IV neuroblastoma. I was in utter disbelief. I have been in this game for a long time and that is the longest survivor of stage IV neuroblastoma (remaining in remission) that I have ever met in person. I am sure that there are others but she is the first that I have ever actually talked with in person. It was the highlight of my weekend.

You also may have noticed that Lynley, the kiddos, and the Norman-ator all made their appearance at the walk as well. Sydney walked all 3 miles by herself. She even got to walk it with her kindergarten teacher, Mrs. Lewis. Graham walked the better part of half of the 3 miles and rode in the rest of the way on my shoulders while I brainstormed with Dr. Granger. I was pretty surprised that Graham had made it that far as he was still recovering from a cold. Little Ainsley also made it much of the way before grabbing a piggy back ride for the remainder of the walk.

Believe it or not I spent much of my time discussing a new nano technology/Irinotecan adult trial which appeared to have implications for children with neuroblastoma. If I am being honest, I never had a really high level of excitement regarding these discoveries. To me, it was just a modest improvement on an already available chemotherapy. How much would it improve efficacy without increasing toxicity? How much improvement would it really offer? Personally, I have always been far more interested in the truly novel therapies that have the potential to be a home run. That is my area of great hope. However, I do understand the need for better and more targeted drugs. I "get" the need for improvement, however, I am looking for the cure. Regardless, I have heard about this technology's use with Irinotecan from enough people and I figured it was about time that I truly submerged myself in the research to form a real solid opinion of what I think about it. I still don't have the answer as I have not completed my research but I am still shocked by all of the people that seem to be so excited about the technology. In the days to come I hope to have pulled together some worthwhile thoughts.

Well, I had best be off. I have a ton of things to do. I am already buried and the week has not even begun.

There is purpose afoot.

1 comment:

ClarkFamily said...

Just stopping in to say HI and how happy I was to read the Success of the TWERP Walk ... Mark - you and your enire family inspire me beyond words ... THANK you so much for sharing your personal journey with Neuroblastoma....

God Bless!