Leaving Vancouver and Over Heating

My family of four has driven our tired Pontiac back to Vancouver to keep Nick’s appointment in the oncology clinic. Dr. Paul slides two papers across the desk to FH and I. It’s a fax from the Pediatric Oncology Group, different from the group BC Children’s Hospital belongs to. Alberta and British Columbia each have their own clinical trials. Nicholas has a blood cancer with affected T-cell, yet BC Children’s offered a drug used for solid tumors, Topotekan. In our hands we are holding active clinical trials for a second phase drug called compound 506U78.

Its main focus is patients with “refractory T-cell malignancies.” BINGO!

“We’re interested.” We say.

August 26, 1999

We’re having breakfast in the sun drenched kitchen at the Ronald McDonald House. I’m called to answer a phone call. Dr. Ron Anderson from Alberta Children’s Hospital introduces himself. His voice is kind. He tells me he has Nicholas’ profile. “I don’t know if we can help Nicholas, but we can try. Can you be in Calgary on Monday, August 30?”

FH and I sit down with Nicholas. He knows the cancer has returned to his blood. He thinks he’s been having a little break before chemo starts.

“Sweetheart, the doctors have said they don’t have any more medicine for you.”

“But, I’m supposed to have more chemo.” God, he’s got big brown eyes. I can see him swing between elation and confusion. What happens if I don’t have any more chemo?

My words tumble. “We can go to Calgary. The hospital there has told us they will look after you. They have different medicine. They want to help us.”

“Are we going there right away? Can we go home first?”

“We’re going home first.”

“OK.”

Dr. Paul meets us in the oncology clinic. “I understand Nicholas has been accepted into the clinical trials in Calgary. I’m sure we could acquire the drug and treat him here.”

I feel his disbelief, his lack of faith. He hasn’t seen Nick’s face dimple when he smiles.

He doesn’t know the little boy inside the child with cancer.

My heart drops when I think of staying here. In Calgary there is hope. Wild horses couldn’t stop us now.

“Not a chance.” I say.

We pack up our room at the Ronald McDonald House. Each time I bend over to put something into a box or bag my head pounds. FH and I smell like we’ve bathed in cigarette smoke. We say goodbye to people we have come to care about deeply. Nurses gather Nicholas into their arms and then brush at the tears on their cheeks.

Dr. Derek meets us outside the oncology clinic. Even when Nicholas wasn’t assigned as one of his patients Dr. Derek would visit when he was nearby. He tells us the lab was not successful at cultivating the apergillus fungus they removed from inside Nicholas’ chest. I’m crushed. I was praying some good would come of the nightmare.

He shakes Frankie’s hand and claps him on the back. He hugs Nicholas. “I’m so proud of you Nick. Whatever you decide to do you just be sure that it’s what you want.”

Friday Aug. 27, 1999

We leave Vancouver. Gathered on the front porch of the House waving goodbye is a group of smooth headed children, their families and House volunteers. I’m crying – I don’t know if we’ll see some of them again. My sister and her husband have come from Nelson and their truck is loaded with our things.

Climbing the big hill east of Osoyoos our engine – soon – will – blow – up light comes on. We pull off, open the hood and stand around the steaming Pontiac.

I understand how my car feels.