Night Watch
Dec. 10, 2001

Yesterday, as James continued down the cruel path that is neuroblastoma, Rebecca and Ben slipped into the family room where James lies in his hospital bed, and they began playing quietly. A few nights ago I had dragged the sofa over so as to be able to sleep as close to James as possible, and there was a newly created space in the corner of the room and there Ben and Rebecca began to build a house. I didn't notice at first what they were up to, as I was reading to James, Lord of the Rings as always, and supplying him with warm bean bags, or a drink, or a some food, or a pill, or adjusting the pillows. But I was aware of their happy presence, suitably quiet because there are new rules now for the family room, don't disturb James or upset him with noise, no fast movement or loud laughing or jumping up and down on the sofa or all the fun things all three kids used to do in this room. They had taken the foam mattress we keep for hospital floor sleeping, and folded it into an arch to make the roof of their house. Then they made a nest of pillows, with many of the colourful little blankets that have come James' way during his illness spread out on the floor. Perhaps they were playing video store, for dozens of videos were carefully laid out on the floor. My token involvement was to offer them a mailbox, which they eagerly accepted and began filling with Christmas cards. As happens frequently these days, I felt a stab of guilt as once again I was too busy with James and his minute by minute care to play with them. But later I felt very happy that they had found a way to be close by their brother, to be a part of his dying while they continued to live.

It's around 5 am and Pam just walked in. "How are you doing?" "Just wondering if James is still alive." We cuddle up on the sofa and watch. "Look, he just moved." We hold each other. Yesterday James stopped holding us. Now his hand reaches out, not for our hands which he pushes impatiently aside, but to tightly grasp the metal bars of the hospital bed. Physical touch has become uncomfortable for him. Pam and I struggle to comprehend a role where as parents it seems we can no longer comfort our child. Earlier in the day were some better moments, in fact he told me "That was the best movie I ever saw." "I love you James" "I love you too, Dad." Then he was hungry, but had to stop eating after a mouthful and started crying because his jaw hurt too much. "I'll try apple sauce." We're out of apple sauce. "I'll try some rice crispies." No good, still hurts. "I'll try tortellini" No good. "Jello?" Yes, a couple of teaspoons. Later in the day comes a new indignity. His lower belly is rock hard and he cannot pee. A flurry of phone calls and the nurse arrives and installs a catheter. A little of the old James is still there, for he wants to see the device, check the drain holes, and understand how the little balloon will be blown up with 3 cc's of saline to keep it in place inside his bladder.

It's bedtime, and Rebecca is crying, sobbing, as she hears what she does not want to hear. "James is not going to get better this time. He is dying. We hope he doesn't have to suffer much longer." Nanny takes her up to bed, and soon she is asleep. My sister Diana had flown in form B.C., and Pam, she and I take turns to sit with James as he dozes. Are we comforting him, or are we just comforting ourselves by being there? In the dim light we see new bumps on his forehead. His right eye looks very ugly, a great bruise spreading downwards, and the white of the eye now mostly blood red. Little bulges near the hinge of his jaw. His body emaciated.

I think a lot about the need to find a cure for this disease, and I think of the other parents who have trod this same terrible path, and the doctors and nurses who are there to help, at great emotional cost to themselves. I think of the parents and children who have yet to face this monster. I think of some words that Pam penned nine months ago when we launched the James Fund, "The fifty Canadian children a year who are diagnosed with neuroblastoma are too young and too ill to advocate and fundraise for themselves to find a cure for this disease. I am the mother of one of them. The time has come for those of us who are able to make a huge effort and help cure neuroblastoma." And that is why we did the press thing. A ton of wonderful emails have arrived since the press coverage of James' "Lord of the Rings" outing. The www.JamesBirrell.ca site has been inundated with lovely messages. Several researchers have got in touch. Perhaps meaning can come out of James' present suffering if we can stop this disease from ravaging other children. The Ring is indeed very heavy as James walks through Mordor.
Syd