April 10, 2012

April 10, 2012

New York, New York!
Here we come! That's right. This is my baby we are talking about and I refuse to sit back and let mediocracy lead the way. That's right I said it. USAC&W has had it's ups and it's downs. We are grateful for everything they have done in overseeing our care, however we have decided to turn Clayton's care over to the Neuroblastoma specialists at Memorial Sloan Kettering Cancer Center in NYC. I would love to help USACW find their way as a pediatric institute, but right now my concern is my child. Seriously though, USACW has so many things going for them, that if they would just implement a few changes they could be amazing.
In the beginning, we were repeatedly told that we were receiving the standard protocol for stage 4, high risk neuroblastoma. True. We were also told that no matter where we went that that same protocol would be followed as put forth by the Children's Oncology Group (COG). Again true- excluding clinical trials and private institutes. We were also offered a clinical trial involving two stem cell transplants. We declined...Thank God knowing what we now know.
What is it that we now know? Memorial Sloan Kettering Cancer Center(a private institute), the top neuroblastoma institute in the world, does not use stem cell transplants as part of their standard protocol. Wait? What? Why in the you-know-what would we do something so risky if the neuroblastoma specialists don't recommend using it? Short answer...we won't.
My baby-man is amazing and I could never live with myself if I did not use everything in my being to find and get him the BEST treatment possible. That is exactly what George and I have done.
The way things look, we will be jetting off to NYC maybe Thursday for a consult with the specialists at MSKCC. We are also thinking that we may do his surgery there as well. Their surgeon is world renowned with extensive experience with neuroblastoma and though we have great respect for our surgeon here, if we can use MSKCC's infamous surgeon, why not? I'm talking this guy resects tumors that can't be resected. He is the Derek Shepard of tumor resections!
Lots of possibilities! Lots of miles! Not a lot of time! We'll keep everyone updated and take y'all to NYC with us!

Oh yea, the scans from Monday did confirm that the tumor has shrunk!

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