Too Much Information for me to handle

On Friday we (Andy & I) had the opportunity to attend an NB conference. The little bit of knowledge that I gained there (most of the speakers had very scientific presentations) has left me very drained emotionally.

Apparently we are so far away from finding a cure for this disease (especially once your child has recurred) that as parents we can only hope that the decisions we make now for Max will prolong his life and give him quality of life in hopes that a cure may be found before his time is up.

The conference was opened by our friend and fellow NB parent Niel Hutchinson who reminded the doctors and scientists there that there is a face to this disease and it's our kids. He choked up as he spoke to them about the urgency in which we need better treatments and a cure and that we (the parents) are "taking the steps to meet them in the middle of the dance floor." I realize now how important it is for parents to be at these conferences, to remind the doctors that this is about people not just about teeny, tiny cells in a dish. And of the urgency.

I met a family there, the Birrell's from Canada - Sid, Pam, Rebecca and Ben - who lost their son and brother, James, to NB in 2001. Sid wrote email updates to everyone that he eventually published as a book. I read it on the way home from VT. It scared the crap out of me to learn how fast this disease took his son, James. It also reminded me that we have to live each day to its fullest as a family and fit in all the fun we can now. The book is called "Ya can't let cancer ruin your day" and I invite you to read it because the book isn't just about the Birrell family it's about the Mikulak family and every other family fighting this battle. It will make you cry.

The conference was closed by Sid who had put together a slide show of his family during James' battle - that slide show was us. I cried and so did every other parent there.

I'm completely frazzled now (and unable to come up with a better description of myself). I'm angry, sad, depressed, lost. There is so much more I want to say but I'm too tired.