There is this weird dynamic in Cancer World. I think it is sort like the WWII vets. We don't really talk about what is happening. Oh, report on Facebook and in cheery Christmas letters. We talk about great acceptance and report on happy cancer. The media is only interested in happy cancer stories. King 5 comes to the SCCA floor and tells glowing stories and children are interviewed. Everyone comments on all the good things.
I remember one piece that Jean Enerson did in Julyish of 2004. Kelsy, a lovely child of a former co-worker of mine commented on the food. We all smiled and loved to see the happy bald children, just trying to be children.
We attended Kelsy's funeral in November of that year.
This is a sobering and awful place. I think it is worse this time because we have made so many more deep and lasting connections. Sort of like that first year at college. We lived and ate and cried and laughed and had donuts off the "Snack Cart" that showed up on the floor every morning at 10:00 am.
Caringbridge and Facebook have kept everyone in touch. We hear about more and more children and friends and family members with cancer. There is a reason we are deeply afraid of cancer. It is sort of the instinctual fear we have about Saber Tooth Cats.... we know it is bad in a way other things are not.
So many of these wonderful, well loved children do make it out of Cancer World. They simply do not. They all start with great hope and optimism. It is the only thing that keeps you going and the fact space is so limited, there is not a bed to crawl into. It takes a few months for the reality of the situation to come clear. Around the edges there is fear and complete and utter despair.
You can't let the kids know how afraid you are. You are their compass and you better know where you are headed. If nothing else, you have to pretend. You hear yourself repeat over and over: It is going to be alright, it is going to be alright, it is going to be alright.
I say this to Mary-Elizabeth ever single day. No your cheeks are not bigger. Your knees are going to be better soon. Your huge, soar, angry stretch marks will not be that color forever.
The hope is that if you say this enough, it will be true.
Just know that while we never tell you everything, we never let tell ourselves everything.