Monday, February 4, 2008

5:51 AM 2/4/2008

Good Morning! Although I have been awake for some 2 and a half hours this morning my brain still has that feeling that it is not quite there. The days following a CNCF board meeting always seem to do that to me. My mind continues to reel into oblivion. It constantly wanders and focus on any one thing is quite difficult. I think this is all a relatively good sign though. It should tell you that I heard so many good and promising things that my brain has been shocked into some form of malfunction.

First off, I was incredibly happy to get back home to see my kiddos. We missed each other appropriately. On Friday, Lynley took the kiddos to see Dr. Debbie. You may remember an ongoing condition with Ainsley that had left her out of sorts. As it turns outm she had scored one raging ear infection. She is now drugged and improving. She is still a snot but I don't think that there is any amount of drug that can fix that. Sydney also scored on the sickness scale. It turns out that she has an infection along with two enlarged painful lymph nodes. They are on both sides and we are pretty sure that this is related to the infection and not to anything more sinister. The good news is that by the time I had got home she was already on the mend. The Grahamster was just glad I got back home and was ecstatic to dig through my bags to find whatever I had brought him.

So, why was the meeting so shocking, so tiring, and so disruptive to my gentle psyche. Well, it was because there was so much covered. There are a ton of projects moving forward within the CNCF. All of which are exciting but all of which are also very involved. There is much to do. On the horizon there is much more for parents and families with neuroblastoma. There will be more articles, more conferences, more videos, more webinars - more, more, more. So, in moving all of this forward it creates a lot of work and a lot of responsibility. With our organization not being huge in the man power department much falls onto the shoulders of the board and people like myself to get things done. As you may have guessed, I don't have much time to do much more so I have to figure out how I am going to squeeze more into a day. Since there are no more hours, this means I have to free things from my schedule. I have to figure out what I can get off of my shoulders to let me concentrate on what is more important. I won't ever stop talking to families and meeting with them and as my schedule continues to be more and more filled with that type of activity I have to be very clever with what I fill the remainder of my time with. It keeps me in quandary.

The other tremendously exciting thing that came out of the meeting was our one on one conversations with our medical advisory board. This may not sound like much to the casual observer of my diary but, trust me, this was one of the best experiences one could ask for. I essentially had a 5 on 1 opportunity to hear about cutting research first hand from the leaders around the country. We talked to Dr. Sue Cohn, Dr. Ro Bagatell, Dr. John Maris, Dr. Darrell Yamashiro, and Dr. Nai-Kong Cheung. We received insight into their research and direction and I can tell you that there are some promising things on the horizon. I was impressed with some new drugs out of Sue Cohn's lab but most impressed by her strategy in delivering them to our kids. She has devised a methodology for moving drugs from adults to pediatrics much more quickly than before and is giving us opportunities to get drugs into our kids years prior to previous methods. Her strategy was published in the Journal of Clinical Oncology and it is quite interesting. I find tremendous value in this methodology and I am excited about the possibilities that it brings to the table. One of the other items that came as a huge surprise was a discovery out of Maris' lab. I previously had heard nothing about the new drug (antibody) in neuroblastoma. I can't speak for it's use in neuroblastoma yet but can tell you that they report the preclinical data to be "unlike the have ever seen in neuroblastoma to date." This along with a slew of other drugs and options are all slated to become available to our kids later this year. It seems like all of this work in spending so much time looking at all of these targeted agents is finally coming to fruition. I was also intrigued by some research coming out of Sloan Kettering. There is a new adaptive cell therapy strategy on the horizon that seems very interesting. This is beyond the work on the 3F8 antibody, 8H9, or the upcoming anti GD-2 vaccine and, in my mind, is probably the most promising if you are talking about impacting lives. Regardless, it was a very interesting meeting and, as you can see, my mind is bouncing all over the place for good reason.

Purpose overload!

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