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Wednesday, April 22, 2015

The Surrogate Decision Maker

This is one of the last pictures I have of my youngest son before we all knew that he had a brain tumor.  It was taken in the summer of 2000 in a place that he loved, where his spirit ran free, as you can plainly see.

I just came back from a meeting of the Children's Oncology Group, where I get to lend my expertise to a group of people who are collectively responsible for the research that saved my son's life.  It is often rewarding, but not always.  Sometimes is is emotional and sometimes it is just hard to be back in that place where I feel the devastation. Things are never ever going to be the way they once were and while that has been true for many years, it can still pack a punch.  Having to make decisions for someone that you love is no picnic.  The theory is that the family makes the decision that works best for them, and that parents are the best people to do it, but it is a lot of responsibility.  And no fun at all.  Even in retrospect.

We are the lucky ones.  His treatment worked, he has grown into his 20's, and he is able to go to college.  It is complicated, no question about it, but let's face it, this is the new paradise.  But some weeks it is hard not to feel sad. 

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