James - ???
May 24, 2001

I guess this rollercoaster ride may soon be over, but not apparently today, as James has stabilized very well, and is completely pain free, is eating well, is in good spirits, and has begun to walk again. He has been made very welcome in the Peterborough hospital whose new name I always forget but which is really still Civic Hospital. The pediatric nurses there have put a great deal of thought into providing the best possible palliative care for James, even though terminal neuroblastoma is outside their normal role. So he has been fixed up with a terrific room with an extra bed for me or Pam, plus cots for Ben and Rebecca should they wish to sleep over. Actually Rebecca is very keen to do this, and help share in looking after James. Ben, I fear, just wants to play with the fancy electric bed. It is an enormous relief to Pam and I that we need not be in Toronto, away from our family and support network, to receive the care James needs. The team of nurses that travelled from Sick Kids to Peterborough last week to help set up palliative care for James has clearly done a great job. We now know that if James does not make it, then everything is in place right here in our Peterborough community. For some time Pam and I have been thinking of whether it would be better for James to die at home or in hospital, and now that we have seen the arrangements that have been made at Civic we are inclined to move in that direction. Most importantly, James is very much at home at Civic, surrounded by nurses that he knows and loves.

Where are we? Is this the final round for James? Why is he better today? Is it the pain patch, is it the new/old chemo, is it an answer to prayer, is it the natural cycle of the disease, is it James own inner will to keep fighting? I have a lot of questions these days. Meanwhile James is having another great day, playing with his new electric toothbrush, making crafts, reading "Arthur " books, ordering up all his favourite foods, shmoozing with the nurses, phoning Uncle Steve and singing him" Happy Birthday" plus the bit about "you look like a monkey..."

Yesterday, following our discussion with James abour whether to continue treatment or not, we somehow got him into the van and over to see his Peterborough oncologist Dr Wierzbicki, and for the first time since the latest great pain began, James sat up, and looking Dr W straight in the eye, said with great emphasis, "I am NOT giving up!"

Well done James.