I came across this AP article today. I find it both terrifying and inspiring. By "inspiring," I mean it gave me an idea for making the world a slightly better place.
Chordoma - the cancer Josh learns he has - is a one-in-a million disease. Just 300 people get the terrible news each year, not even one per day. It strikes all ages, at different spots along the spinal column. The tumors can be removed, but the cancer is relentless. Chemotherapy doesn't work. Life expectancy is around seven years.It seems to me that if we of the SC were to pull together to support any particular good cause, aiding a college student in studying his own disease would be a prime pick. The Chordoma Foundation (founded by the student in question) makes it easy to donate online or by mail. You can read about the research here, and you can make a donation here. I think this would be an excellent use of any spare resources we may have.
The MRI shows Josh's tumor is in a tough spot, in a bone inside his skull. It extends onto his brain stem and wraps around several arteries. There are two surgeries, then weeks of recovery in the hospital. He and [his mother] pass the time reading whatever they can about the disease.
It's an odd experience, trying to nurture cells to help others figure out how to kill them. As he learns more and more about chordoma, Josh tells his mom the science fascinates him. He just wishes it wasn't life and death.
Josh isn't the first person to work in a lab to find a cure or treatment for his own disease. A cystic fibrosis victim named Jeff Pinard has done work on the genetics of his affliction. A Tulane medical student named Andy Martin studied a cancer called sinonasal undifferentiated carcinoma, which is even rarer than chordoma.
They're uplifting stories. But Josh sometimes worries they distract people from the urgent reality. Andy died in 2004. Josh has become friends with a local 12-year-old with advancing chordoma. He knows what the disease does.
"I guess the way I look at it is that there will be a time for every disease when one can in essence outrun their disease," Josh writes in a late-night e-mail to a reporter who had been spending time with him.
"For Andy his disease was too fast and the science too slow." For Jeff, "science has just barely outpaced his disease. I hope to be in Jeff's category rather than Andy's."
If you choose to donate to this cause, please consider posting (anonymously) the amount of your contribution in the comments section here, so that we can keep a combined total to cheer ourselves on. And please spread the word.Posted by Wilson at February 20, 2008 12:16 PM | TrackBack