May 10, 2013

May 10, 2013

George and I feel like we are done with 3f8, so when MSKCC told us today that the only other treatment Clayton might be eligible for right now was Hu3f8 (humanized 3f8- think of it as the humane version), we weren't sold. Like all hospitals, MSKCC has different trials that each have their own eligibility requirements and sometimes only accept a limited number of children. We would love to have the "neuroblastoma vaccine" they are testing, but a child must be in their second remission to be eligible for that trial and even then, only 15 kids can be on it. That said, George and I have made peace with our time and treatment here in NYC and I think we are ready to move on. We love MSKCC, we support them, we believe in them and if Clayton ever relapses, we will come straight here. But for now, we need something they cannot offer anymore. Maintenance treatment.
For that we are looking towards the Neuroblastoma and Medulloblastoma Transitional Research Consortium (NMTRC). They are another ground breaking group of researchers headquartered in Grand Rapids, MI. Yes, Michigan. They have a trial for a drug known as DFMO. The purpose of this trial is to show that the use of this drug works to prevent relapse. In other words, it is a maintenance program. If we were within 120 days of first being NED, we would have nearly 18 options about where we might want to go for this trial. Since we are beyond that 120 day mark, we are initially limited to Grand Rapids or San Diego. In time, we hope to have more options in terms of location. We are hoping for Charlotte, NC. For those kids past the 120 day mark they don't get to partake in the original trial, rather they take part in what is known as a "compassionate use" program. This is a program for kids who could benefit, but do not meet standard eligibility criteria. Anyhow, this drug is a two year plan and has no significant side effects. We are still researching, but it seems like our best hope moving forward.
I can't lie, I'm ready to be done with NYC. I'm tired of the concrete and the cigarette smoke and concrete dust. I'm tired of the filth. I want trees, I want nature! For a city that tries so hard to be natural and "green", it is the most unnatural place I have ever been in, in my life. There are parts of the city I love, but I don't get to experience those parts and when it comes to the day to day living, my heart and soul are screaming to escape. I want oceans and mountains, rivers and valleys; I want to be able to show my son the world, to show him life. There is nothing in the city I want or need to show him. Like I said, we are ready to move on. Obviously, that's what God intends.
We can't do anything until after his back stuff over the summer, but when it's time for our next scans, we might be headed to Michigan...we'll see.

Excited about new options, excited about possibilities that don't cause pain...and nervous because in one month we start working on his back!

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