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November 1, 2007

By Margot | November 1, 2007

What are you thankful for this year?
 
Before I had kids, a friend and I volunteered in Father Joe’s Village in San Diego to feed the homeless on Thanksgiving Day.   As we chopped the rather dicey looking vegetables that had been donated and I served dinner to poor (mostly men) with long dirty fingernails and no family to eat Thanksgiving dinner with, I was thankful I was not them.  I was thankful that I was going to go back to have dinner with family and friends who I loved and who loved me.  I was thankful that I didn’t have to worry about where my next meal was coming from.  Two years ago as I was driving Sam back from The City of Hope Hospital to San Diego I was listening to the radio as he watched a movie.  The host of the radio show was telling her co-hosts about the previous day and how everything had gone wrong with the house that they were trying to buy (or something like that) and her kids were driving her crazy and she said she called up her best girlfriend to lament and her girlfriend said what they always said to each other to help gain perspective, “Laura, our kids don’t have cancer.”  There it was, two people who were thankful on regular basis that they weren’t me and that their kids didn’t have to go through what Sam has gone through.  They were thankful that their kid’s bad days would be healthy kid bad days and not the exponentially worse, cancer kid’s bad days; and that they could be relatively sure that their kids would be with them for many Thanksgivings to come.
 
At that time, Sam had just finished his stem cell transplant which was brutal to him from our perspective but the doctors said he had breezed through it compared to what other kids had endured from it (death being the worst side effect they’d seen).  It left him with great hearing loss and most likely sterile.  The stem cell transplant is the last part of the COG 3973 protocol.  The 97 in that number is because the protocol was developed in 1997 (almost ten years before Sam was diagnosed).  Neuroblastoma is a very nasty disease and up to this point, there haven’t been any options for doctors aside from the very toxic treatments aimed at killing the disease.  The pace for change in pediatric cancer treatment is excruciatingly slow, too slow, unfortunately, for many many kids.
 
Magic Water is a group of parents who have decided that kids deserve better than ten year-old, ultra toxic therapies. We are partnering with doctors to fund research for cutting-edge, low toxicity drugs that can give all neuroblastoma kids a chance without punishing their bodies sometimes to the point of no return. We are launching Give Thanks for a Cure this month to help fund the Phase II Nifurtimox trial in Vermont. The Phase I trial for this drug has had very promising results. The three children featured on the Magic Water web page, Max, Sam and Will, will not benefit from the Phase II trial as Max and Sam are already on Nifurtimox and Will is not a candidate for it, but it has the potential to help countless other kids with Neuroblastoma with minimal side effects.  Please help spread the word about Give Thanks for A Cure and stop by the website and let us know what you are thankful for this year, and, if you find you just have too much money (ha ha) as the year is nearing its end, please consider donating to this worthy cause.
 
This year I am even more thankful for my wonderful friends and family than I was that day ten years ago.  I am thankful for my three amazing children who are the lights of my life.  I am thankful that Sam will not be spending the night in the hospital this year for Thanksgiving and that he is here to grace our table with his smile and his laugh.  I’m thankful for my husband who never quits and I am thankful that I am me (Sam, Andy and Charlie’s mom).
 
Margot
http://www.givethanksforacure.org

Topics: Progress Reports | Comments Off on November 1, 2007

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