Sam's Story

I can't stop thinking about Sam and his family.  Especially since I saw his smiling face on the front page of last Saturday's Wall Street Journal (sorry, online subscription needed to follow the link, but if you'd like to see the article, email me).

Sam is the nephew of a dear friend of mine.  And he has neuroblastoma, a deadly form of cancer that tends to strike little kids.  When my friend first told me about his brother's son, I knew exactly what neuroblastoma was.  I have a very distinct memory of an ongoing story when I was producing TV News for the local ABC station.  This has to be somewhere around 20 years ago, but the memory lingers. There was a little girl who had neuroblastoma, and her health insurance refused to pay for a potentially life-saving bone marrow transplant, which they deemed experimental.  The family held a number of fundraisers to try and pay for it themselves, and the station

covered the story quite a bit. I don't remember the end of the story, but I'm sure she didn't live long.  We've already discussed the trouble with health insurance here, but I want to point out I just read a story today about a 17 year old girl who died just as her insurance was reversing it's decision to deny coverage of a liver transplant that they called experimental in her case.

But back to Sam, and neuroblastoma. My friend also recently posted a video of his brother speaking to a group of cancer researchers, that is of course very emotional and impactful.  Sam has a web site too, where you can follow his progress. They got permission to post the Wall Street Journal article there, so it will be up and public soon.

Then Louise on our New York City Mom's blog wrote about a kid with neuroblastoma that she knew, and a cookie fundraiser going on for these kids.  From Louise's post, I read this family's blog, and an absolutely heartbreaking entry on chemotherapy that caused extreme pain.  I know chemo can make you sick, but I hadn't really thought about pain before.

And then this morning in the New York Times I saw a memorial picture of a little girl who died of neuroblastoma a year ago today.  She looked like she was about 5 or 6.

I remember when our youngest daughter was just 5, and we were devastated to learn she had Type 1 diabetes. We were in the hospital for a few days, mostly to learn how to take care of her and I remember taking her to the play room, and seeing the little kids with IVs and chemotherapy bags and thought, we are lucky.

Sam's web site links to an organization you can donate to that furthers the research and helps the kids. It's called Magic Water, named after how a mom described the chemo to her 18 month old daughter.