If when

June 29, 2001

I am glad to say that James is feeling a little better as the week draws to a close. Perhaps the pain meds are kicking in, or perhaps the chemo is having some effect, or both. For James the fight this week is quite specific; it's his right arm, and it's his left femur/hip. The one left him learning to eat cereal with his left hand, and the other left him unable to walk. Every few minutes of his waking hours his bean bag went back to the microwave to be reheated, a job that Carlo became very good at, and then he would cradle it to one or the other spot, the warmth seeming to bring some comfort. At James' request the hospital bed arrived back in our family room. Something of a sign of defeat, but it meant he could lie more comfortably near the centre of action, which in our crazy work-out-of-the home situation is the kitchen/family room. By Wednesday afternoon he was well enough for an outing with his wheelchair, so we took up Marlis on her offer of a dinner for our family on her back porch, a lovely spot that flows into her back yard, an enclosed courtyard with high brick walls that reminds Pam and I of our pre-kids visits to Italy a million years ago. Actually Marlis's place is a bed and breakfast in downtown Peterborough, but just like Italy, once you're past the front door you are in a different world, and the rear courtyard is full of little statues of cherubs peeking out from behind the shrubs and flowers, and there is even a brick firepit where the children lit a fire. We ate a terrific summer meal, with delicious salads, corn on the cob, hot dogs and cake, and our friend Ron turned up with fresh strawberries and cream. Then while Pam and James curled up in the hammock, Ben ran through the sprinkler and watered the garden with Rebecca. On the way home we stopped at the waterfront and threw pennies into the new fountain, and then to the great excitement of some of us, the evening freight train suddenly appeared on the bridge across the river, three locomotives pulling hard, perfectly completing our outing.

Thursday saw some more small gains, with James back periodically walking, very slowly and with a cane, but definitely an walking. First there was bloodwork to be done, and I am glad to say the portacath worked well today after several iffy episodes over the last few weeks. Then we managed an outing to work on the racer, a bit of a landmark day there because the visit saw the completion of the woodwork phase of the project. Next we will move to wheels, brakes and steering. And then James went off to school for an hour, his arrival causing quite a sensation with his classmates, who all wanted began talking to him at once, and who all wanted to push the wheelchair. It was a great achievement to make it to the last day of school.

For Pam and I the day was the usual flurry of medical arrangements, constantly trying to keep at least the main phone line open in case Dr Baruchel phoned. The bloodwork results showed a transfusion of red blood cells was going to be necessary, and because the pain had lightened we put radiation of James' sore arm and leg on the back burner and set in motion plans for the transfusion this morning. But that meant a trip in to oncology to do a cross and type, a necessary but irksome chore that preceeds a red blood transfusion. Then a visit to Ravi for a cranial saecro session, always a treat for James, and what do you know, another day has passed without doing a stroke of work, so it seems. Time to carry James upstairs for a bath, and of course, the evening ritual of reading the Lord of the Rings. I printed up some Hildebrandt artwork from the internet of the Tolkien saga, which has thrilled Rebecca and James as we get deeper into the story. Lately James' room remains unused, with James sleeping in our bed with Pam, which leaves me wandering the hallways trying to decide where to sleep. Rebecca always has trouble going to sleep and always wants someone to sleep with her, so that's where I've ended up this week, contrary to the rules of Dr Ferber, the infant sleep expert.

So James is pretty cheerful, and we hope (wildly, once again) that he can attend at least part of Camp Ooch staring on Sunday. It is heartbreaking to see him trying to get in shape to go. His immediate battle is the two places that hurt. I hear him say "I'm exercising my right arm so it'll be ready for Camp!" as he pumps it up and down. "And I do believe my left femur where it attaches to the pelvis is getting better." As we go through this long drawn out fight, it seems to me that "if" becomes each day more a matter of "when". But we will take our cue from James, who has never got it wrong yet, and as they say, it ain't over till it's over. An hour ago I was sleepless, pondering bone marrow fatigue and low absolute neuts, and James' empty bedroom. Now after a bit of time at the computer I can move on. A memorable dinner with family and friends is a wonderful thing to ponder as I head to bed.

Syd