Thursday, June 14, 2012

Charlie's Story


There's a great story that we produced about a young boy named Charlie. It follows the Mom, Caroline, and her four years of writing about -- mostly via email updates -- Charlie as he went through treatment for leukemia. 

http://www.dana-farber.org/Pediatric-Care/Treatment-and-Support/Patient-Stories/Charlie-Rider.aspx

One of my favorite parts (it's in part 1 of the four part series) is when Caroline writes about how for the first few months she expected every doctor and nurse to walk in and say, "Sorry. We made a huge mistake. Charlie is fine."

She said that it took about six months for reality to set in.
Seems about right.

But I think I will always hold out at least a sliver of hope that it's all a big mistake -- and I don't think that's just because I'm asymptomatic. It's just in my blood, which, in case you were wondering is B+. When we're creating publications at Dana-Farber, particularly our Paths of Progress magazine, we talk a lot about creating a tone that's hopeful and optimistic, but honest as well. It's a fine line. One person's optimism is another's rose-colored glasses delusion. And by the same token, someone's realism is another's melodrama or lack of faith. Who's right?  Most people -- myself included -- will extol the virtues of keeping a positive attitude. Some will point to the link between stress and the immune system and try to prove the connection between hope, faith -- whatever you want to call it -- and outcomes. But it's much simpler for me. If I'm going to accept reality, then I need to try to keep the worry at bay. Because every day that I spend worrying is a day that  cancer wins. So if that takes a little delusion -- a little belief that my next scans will somehow miraculously show an absence of enlarged lymph nodes -- I don't see anything wrong with that.