Tuesday, March 2, 2010

A Day Chock Full of Neuroblastoma

Yesterday was a busy neuroblastoma day. No, not to worry, this was not about Sydney. This was about doing work for the foundation, however, Sydney was in tow and we had a great morning. I must be honest, I prefer these types of days but, unfortunately, they don't pay the bills. Until I can get some grants in the door I am going to continue to be relegated to working on neuroblastoma part time. The fact of the matter is that when we say we raise money for research or or we fund raise for a particular neuroblastoma education project it is just that. We don't funnel dollars into administrative expenses and the like. So, unless we find people interested in supporting a salary so that we can go out and help and educate families full time we are left with doing it on a volunteer basis. That is okay. I just feel that there is just so much more that we could be doing. The good news is that good neuroblastoma work continues to be done.

Yesterday Sydney went with me to the Chesapeake Energy building. Chesapeake has agreed to help us generate some awareness about neuroblastoma and has been generous in providing us with a pulpit to speak. They provided that opportunity to Sydney as well but, she will be the first to tell you that she was a bit too embarrassed to be up in front of all of those people. It did not take long to relieve her of the dear in the headlights look and she ended up making it through with flying colors The most important point being that we had another great opportunity to talk about neuroblastoma, the problems our children face, and what we can do to help them. I am thankful to Chesapeake for the opportunity and the support.

After that, I made my usual stop by Cook's to visit with the families and many of our friends. It is also a good opportunity to spread a little hope. I remember when Sydney was in treatment and I saw another family that had a child that was 5 years out from their stage 4 diagnosis. That little pass in the hall put a little lift in my step for weeks.

My visit was short lived though as I had a meeting with the NB Love Club to talk about the many neuroblastoma projects going on. Most notable in my mind was the 3rd Annual Neuroblastoma Walk for a Cure coming up in April. With each year the event has grown exponentially and I am very much hoping for the same this year. This is an important year for the Walk as it will be funding an important project at Cook's which will help bring MIBG therapy to the great state of Texas. Assuming we can do our job the funds raised by this year's walk will go to help make Cook's the first hospital in the state of Texas to offer MIBG therapy. In fact, it will be the first in our entire region with the next closest MIBG center being located in Cincinnati, OH. This "little" addition will bring a litany of new neuroblastoma research projects and clinical trials to Cook's, further cementing its place amongst the worlds leaders in neuroblastoma treatment. There are few hospitals in the world that can make that distinction. Cook's will be able to offer more clinical options than many of even the best known neuroblastoma centers - yes, even including Sloan Kettering.

Of course, all of this rest on our shoulders - or, should I say our feet.

I am working on the website for the Neuroblastoma Walk for a Cure and should have it completed for registration in the next few days. Until then ----

SAVE THE DATE -- April 3rd, 2010

See, I told you it was a purposeful neuroblastoma day.

No comments: