For Ron and Angie Grisdale it’s incomprehensible that their four-year-old granddaughter, their daughter and her family should have to suffer.
The Grisdales are long-time Williams Lake residents and their daughter Morgan Pawluk grew up in the community. Morgan now lives in Edmonton, Alta. with her husband and two young children.
In November, her daughter Brinley was diagnosed with leukemia. Since then, their world has been turned upside down.
It started out with a leg pain — not unusual for a child who loves ballet, thought her parents.
Then came the fever that hospital staff put down to a virus.
But when the fever did not break over the following 12 hours and her lethargy grew, the Pawluk family went to the Stollery Children’s Hospital in Edmonton.
An X-ray was done on Brinley’s hip, which turned up nothing out of the ordinary.
Staff suggested the problem could be a virus or septic arthritis. It wasn’t until a few more days had passed with no improvement that the family returned to the hospital for blood work that indicated low blood-cell counts, a blood smear and finally a bone-marrow test that determined it was leukemia. In the face of the terrible news there was room for optimism. Brinley had the most common and treatable form of leukemia.
“It’s a better outcome,” says mom Morgan. I believe it’s 80 per cent. It’s the one they have the most knowledge about treating. This one they have a good road map as to where they are going with her and the treatment she’s going to receive in the next three years of her life.”
A month and a half into treatment Brinley is in remission. Nevertheless, her treatment is rigorous, with weekly lumbar punctures that feed chemotherapy treatment into the spinal column; additionally, she has daily oral chemotherapy. Her treatment will change as it proceeds. In the maintenance phase that lasts two and a half years she will have chemotherapy every month. To stay on track, Brinley must meet physical benchmarks or her treatment will have to be re-evaluated and potentially changed.
“A huge fear of ours is relapse,” Morgan says.
“Right now her blood work is good but her blood work could be completely off the wall by Thursday. It’s a constant worry.”
Other than the emotional roller coaster of diagnosis and treatment, the Pawluks have lost their sense of security.
“You don’t have so much security in knowing that everything is going to be OK. It’s so hard to believe that in October she was fine; in November she was fine, and all of a sudden she’s not OK. It’s not like she’s going to get better tomorrow or next week. This is a long stretch and it’s really taxing and it’s a shock.”
As for Brinley, she’s lost the chance to do what she loves — ballet — and has knowledge far beyond her years of cancer treatment and its side effects.
The Pawluks are also facing bills for medication that is not covered by Alberta Health. While the chemotherapy treatment and related drugs are mostly covered there are “supplementary” drugs that are not. Those drugs are antibiotics and others used to ease Brinley’s chemotherapy treatment and prevent the shedding of stomach lining. The most expensive one costs the family $200 despite an extended medical plan that covers 80 per cent of the cost.
“Financially it’s a huge cost,” Morgan says.
To help with some of this, the Grisdales have set up a trust fund for Brinley at TD Canada Trust. Individuals wishing to can make donations to Brinley Ryann Pawluk to account number 09346341706.