Nov. 1, 2001
James is eight

Over the last ten days we have struggled with some difficult decisions on how aggressive to be with regard to James' treatment. Pam and I needed no convincing when, after visiting, one of the medical team said "He's not going to get better this time". So we have had some days where the best we could do was carry him downstairs in the morning, up the pain patch dose, keep reheating the bean bags for him to place on the worst bone pain spots, and then cuddle up to read a distracting book. And meanwhile the regular bloodwork would tell us the story of what's happening in his bone marrow. The blood counts would drop, leaving him very prone to infection or whatever, we have to stop the chemo, the counts get better, but the pain increases. Then a few days later the counts rise, we start chemo again, at a lower dose, and the cycle repeats itself. One decision: if he develops a fever during the low count phase, then we will not rush to hospital for hookup to intravenous antibiotic within the hour, which has been the rule to date when James is immuno-suppresssed. Another decision: Bigsby the exuberant dog, currently on antibiotics for a bowel parasite and busy soiling carpets around our house and generally posing a health threat, Bigsby the morale booster who dashes madly around lifting our spirits and who provides great comfort to James and all the rest of us, Bigsby the bundle of fun gets to stay.

A decision of another sort was made on the weekend. Although planning for a Halloween still five days away, an eternity considering James' present state of health, seemed a little ambitious, we did it anyway. As James wasn't walking, a couple of creative moms came up with the idea of a wheelchair costume. And as Halloween approached James started feeling better, in fact he started walking again, the pain vanished, and he didn't really need a wheelchair costume. So last night Rebecca looked stunning dressed as a shooting star, Ben was adorable as a mouse, and James stole the show grinning away in his wheelchair, magnificently transformed into a front end loader, complete with a movable bucket, lights on the roof, danger sign on the back, and the envy of all the other kids on the street. Even nicer than all this, we got to do the annual ceremony of taking the children's photo on the staircase before they left to go trick-or-treating. "We have to do it! It's a tradition!" said Rebecca as Ben scowled. We did it, and Hooray! Against the odds there's yet another Halloween for James.

And today James is eight years old. Over half his life has been taken up with battling cancer. I had an interesting email conversation with a friend and I confess that the gist of it was the thought that if it were it possible to wave the magic wand and undo James' birth on Nov 1st 1993, would I say sure, erase it all, and then we wouldn't have to go through this mess. Of course the answer is No Way! we will take the good with the bad. It is not better that James had never been born. On Saturday we are planning a family and friends birthday party, and we hope that he remains as perky as he has been for the last few days. A final word from James "All of us want to go to heaven, but not without each other."
Syd