James - Day 8
Dec. 2, 2001

Amidst the great sorrow of our last days with James has been much of beauty and peace. Today was day eight of what we know deep in our hearts is the final run. How strange it is to be past the time where a new symptom galvanised us into adrenalyn charged action, where you fought tooth and nail for another reprieve. Now we have even dropped regular bloodwork, for we can no longer reasonably act on the information so gained. Medical people don't laugh, but here is a sample of Pam and Syd talk: "James is complaining of a swollen foot." "Yes. At this stage that can be a sign of liver failure." "Do you think his stomach is looking a little distended today?" "Yes." "Probably the liver." Maybe liver failure would be the best thing, all things considered. We will talk it over with the doctor tomorrow. Of far more importance now is how we redeem each hour. The rest of the family is now sleeping, and I can ponder what day eight has brought us.

We are trying to balance things for Rebecca and Ben so that they spend time with James while keeping up on the fun stuff. We have a rule in our house that cancer must not stop the fun. You are allowed to smile when you are sad. This afternoon they went off to see the Snow White pantomime in Stirling, and returned full of excitement, Ben telling me "We all shouted Boo! really loud and long and ugly everytime the wicked witch came on!" While they were gone Pam and I took turns lying with James, sharing secret things, savouring the gentlest of cuddles, banking memories for the future. Our family room, the place where James now lies in his hospital bed, has a new feel to it. Several hundred little Christmas lights strung around the walls and bookcase certainly change the atmosphere, in a very nice way. Stuck on the brick wall is a picture James painted four years ago while in hospital just after diagnosis. It's a picture of a tree, lots of branches, lots of green, and it has always brought me reassurance, though I don't know why. A mounted photo of a Royal Hudson locomotive sits underneath a magnificent Lord of the Rings poster showing the nine companions passing down the river between two massive statues into a blaze of light, the kingdom beckoning. The initial concept sketch of the Soap Box Derby racer still remains where it was temporarily taped to the bookcase six months ago. Lately the toys have been disappearing, as James can no longer play with them, to be replaced by get well cards and gifts. A mattress now lies on the floor for Rebecca, "I am very comforted by being able to sleep with James." She gives him the tenderest of hugs at bedtime, and says "I hope you're feeling better in the morning." "I love you Becca" he responds. I am very proud of Rebecca, who moves through the tragedy of James' illness with beauty and maturity. We discuss the inhumanity of hospital beds, which are not big enough to allow someone to sleep in the same bed with their sick child when they need you most. Of course James is now too fragile to contemplate a move to another bed. How Pam and I treasured the overnights in bed with James upstairs, where he would fall asleep clutching your hand, and then later in the night reach out to find your hand once again. This, in case you have forgotten, is to comfort us, as James pointed out in times gone past.

So far the things that I feared most for James as he lays dying have been been kept at bay. The pain level is acceptable to James. The disfigurement factor I feel better about ever since my friend John reminded me that it's the disfigurement inside a person's soul that matters, not the external appearance. The disease has not stolen his sight yet, and neither has it clouded his mind. He can still eat. He is awake ten or twelve hours a day, far more than predicted, and his waking hours are happy and full of family and friends. James is accepting of his situation and we can talk about death and eternal life. And inexplicably an unexpected peace has settled on our house. How I pray we can hold this course. Lots of tears and lumps in the throat, but no more rushing off to work, no more evenings away from home, no more dashing off to hospitals. When I told James last Thursday after choir practice that I would not be returning to work, he smiled at me, grasped my hand and said "Thanks Dad."

The day included 160 pages of the Lord of the Rings, the book could almost be a manual of what to discuss with your dying child. Tonight Pam, Rebecca and James played cards, "Go Fish", with James missing not a thing. Ben joined James and I to watch a documentary on submarines, and later at bedtime Ben told me the best things he used to do with James, like going to Cobourg station to watch trains, or making water world in the sand at the beach at our cottage, or jumping off the bunk beds at the cottage. Ben being a noisy, busy, rough and tumble five year old, it is hard to find ways for him to spend time with a very fragile James.

So it now being 12.40 am, I will join James and Rebecca for some sleep, not knowing if James might die during the night, and at the same time not fearing that eventuality either. The danger of late night emails is that they become very honest. Our journey continues, as unpredictable as ever, and I hope the peace stays with us.
Syd