Dec. 12th 2001
Now Ben is Six

James, as always, continues to hold onto life with great determination. Each day the disfigurement grows, as a great bruise engulfs his right eye and right side of his face. New tumours appear daily as bumps under his skin. A couple of days ago a catheter became necessary, another indignity, minor as things go, yet in typical James fashion he first wanted to check out the device, see how it worked, confirm that the nurse had the right amount of saline in the syringe, and then direct the insertion. The Cadd pump now delivers the pain medication Dilaudid at a dose ten times what we began with 16 days ago, and on the whole it is proving very effective when he is at rest. But when some movement of the body or legs is required, or if you touch him in the wrong place (many of those), it hurts, a lot. A kiss from Pam on his face yesterday left him crying in pain. We are discovering that our role as comforters is just to be close by, but not touching. A hard role. No more cuddling, except for the final one.

But to pick up on the "holding onto life with great determination" part: though he is on huge doses of narcotic and ought to be asleep most of the time, James has chosen to stay awake. 13 hours yesterday. The medical professionals are mystified. Time enough to listen to many pages of Lord of the Rings, third time through now. Time to start a new Lego, 570 pieces, once again no sign of cognitive deficits here. TVO Kids brings smiles as he watches Arthur, Zoboomafoo, The Big Bang, Brilliant Creatures and Art Attack. A nice mix of nature, science, creativity and kid life. "Dad, did you know that there's this one lizard that squirts blood out of its eye at its enemies?" Thank you Brilliant Creatures for coming up with that one.

We are all mystified that James is still awake and alert at a point where one expects otherwise. James' primary nurse calls from Toronto to see how we are doing, we talk a bit, and she wonders why James is holding on. "Is there something he still needs to do?" So later I talk with James and ask the question. Without hesitation he responds "I want to be a teenager and have a really great Super Soaker waterfight!" I ponder this one for a moment, wondering where you can buy water guns in December, surveying our family room, thinking maybe we could drape the place with plastic, have a water gun extravaganza... We talk a bit more about the Lord of the Rings movie. "It's the best movie I ever saw." We talk about Frodo, who deserved a long and happy life after fulfilling his mission, but it wasn't to be, the wounds were incurable, and he left instead for the Havens. Just like James. He nods his head. I whisper to James that if he is ready to go to his house in heaven, then he has our permission to go. We don't want to lose him, and we will be very sad when he dies, and miss him very much, but he doesn't have to keep suffering just for us.

I had thought that arranging the Lord of the Rings screening was something we were doing for James. Yet it has become a great therapy for many of us. On Sunday night, as Rebecca cried and sobbed as she grappled with James' imminent death, Pam spoke with her and said "A lot of people think James is like Frodo, but I think that our whole family is like Frodo because we are all carrying the weight of the Ring, and that the family and friends who are helping us are like the rest of the Nine companions, the Fellowship, who walk with him. The Fellowship cannot carry the ring, but they valiantly stand by the ring bearer, protecting and helping in any way that they can." Rebecca understands, she is comforted, she slips downstairs to say "Goodnight James! I hope you are feeling better in the morning!"

And amidst all of this Ben had his birthday. Now he is six. We gather round James' bed, light the candles on the cupcakes and sing happy birthday. "Make a wish before you blow them out!" He starts to tell me his wish, then changes his mind and says "I wish all my wishes would come true!" James pipes in, "Ben, can I help put together your Rescue Heros fire truck?" Ben was just ten months old when cancer first struck our family, and Pam withdrew from motherhood for 7 months of aggressive treatment, leaving him to be cuddled by countless babysitters. In his short life has seen much pain and grief, and yet seen the best of love, compassion and friendship. Not to mention the adventures. Good luck, Ben, twenty years from now as you bring up a family and wonder what "normal" family life is supposed to be. I hear in my mind some little voices saying "Why can't we have adventures like you and Uncle James and Auntie Rebecca used to have?" Nanny is sitting close by as I write, flipping through the photo albums, as we choose some of the best to be enlarged for the inevitable memorial service. So many memories, every page filled with smiling faces, another spectacular adventure, another once in a lifetime moment.

Thank you, once again, to you, the Fellowship, who stand by as the burden grows greater every day.
Syd and family