Friends, Lenny, Marlo and little Jake, Fred D. Jr and his family have traveled from home and visited with us. The chemo Ifosamide is making poor Nicholas sick. He’s been looking good with color in his cheeks, but he has absolutely no energy reserves. A few hours of puking sucks the life out of him. There is talk again about a feeding tube being put through the wall of his stomach. Nick scowls each time this is mentioned.
Sunday, July 25, 1999
Nick is discharged today but still has nausea. We are giving him two Nabalone pills a day. This is the new wonder anti-nausea drug, a marijuana derivative. It’s $25 a pill and doesn’t stop the puking. Maybe he’d be better off just smoking a joint.
This morning, dead hair littered Nicholas’ pillow. Our nurse is nicknamed “The Barber.” For the second time he shaves the dying hair from Nick’s head.
“Smile.” I say and take a picture of Nick.
I wish I hadn’t.
Sometimes my stupidity even surprises me. What an inconsiderate dummy I am.
“Smile.” Really? Nick should have asked me what’s to f’n smile about? Instead, he tries to please his idiot mother.
After the fact I see, in the face of my youngest child, massive sorrow. And something else that scares me. Despair?
Is he giving up?
Nick shuffles off like a stooped, old man, dragging his IV pole behind him. On the floor around the empty chair is a circle of fallen hair.
July 30, 1999
I wrote a letter to our main Oncologist who is leaving BCCH for Manitoba.
Dear Dr. Kent,
Our lives have been impacted by Nick’s disease. His journey amazes me as a parent – it must grip you as a doctor.
You introduce children’s parents to the unbelievable world of childhood cancer. Your initial words, the pictures they paint and the actual physical impact they had upon my body and psyche made me look at you as if you had two heads.
I know you understand how completely surreal some of your conversations have seemed to us. When do we wake up? Sometimes I hated you. Well, I hated what you were saying.
The negatives of this sickness you know intimately. We just wanted you to know that you are a positive and counted as one of our blessings. Cancer is a disease that takes lives, young and old everyday – how fortunate there are people such as you who have a calling to the profession of medicine.
Thanks for your guidance. We appreciate your honesty, kindness and patience. Your footprints along Nick’s path will be clearly visible to him for many years to come.
Good luck and best wishes for a happy fulfilling future to you and those you love.