A cancer diagnosis can spell financial straits for families–that’s where POGO steps in
Melissa Leong
National Post
mleong@nationalpost.com
When the youngest of Donna Rukavina’s four children was diagnosed with cancer in 2006, the Mississauga
teacher stopped working for three months.
She stayed at the Hospital for Sick Children in Toronto for 16 hours a day while her 16-year-old son, Ryan,
received chemotherapy; her husband, who was self-employed, would stay at the hospital overnight so that
someone could be at home with their disabled daughter.
One day, the couple went to the pharmacy to fill a prescription for Ryan’s chemotherapy drugs. “I was paying
for a bottle of water at the cash and I heard my husband yell, ‘What?!?’ ” Rukavina, 57, says. “One of Ryan’s
chemo drugs was $3,942. We had to have it for four months. It was $16,000.”
When a child is diagnosed with cancer, he or she may endure hundreds of blood draws, bone marrow
aspirations, chemotherapy, spinal taps and surgery. Families must struggle with stress, turmoil and the
unexpected — sometimes crippling–financial costs.
“Any parent confronted with this focuses entirely in the first instance and perhaps throughout on the survival
issue,” says Dr. Mark Greenberg, an oncologist at the Hospital for Sick Children. “It has to be what a parent
does — protect a child. But the ancillary issues are enormous, and it takes forever to put oneself back on one’s
feet.”
Argerie Tsimicalis, a registered nurse, presented research last week at the Hospital for Sick Children regarding
the costs of childhood cancer. Of the Canadian families surveyed in her study, half spent $3,500 to $51,000 in
three months on travel, food, accommodation, supplies and equipment such as wheelchairs.
Usually one parent must give up a job, and it is often moms who shoulder that burden, Tsimicalis says. Mothers
lost as much as $11,059 in income and fathers lost up to $18,351 while they had children being treated for
cancer.
“A dad said he couldn’t afford to pay for parking, so he and his wife would take turns staying in the car while
the other visited the child in the hospital,” says Vanessa Yakobson, director of development at Pediatric
Oncology Group of Ontario. “There was a single mom in Barrie and she had to sell off her condo which she
owned, live off the equity and then had to borrow from family and friends so that she could drive back and forth
to Sick Kids.”
Dr. Greenberg co-founded the Pediatric Oncology Group of Ontario, known as POGO, in 1983 to support the
families of children diagnosed with cancer. The organization has established a pediatric oncology system in the
province that is emulated around the world.
Rukavina’s health plan only paid for a portion of Ryan’s chemotherapy. POGO covered the rest. POGO also
helped pay for care for her daughter, Melanie, who suffers from cerebral palsy.
Rukavina believes her son was sick for about eight months before he was diagnosed with Hodgkin’s lymphoma.
He was pale, thinning and lethargic. But he was blond and blue-eyed so fairness was normal. He had suddenly
grown to be 6-foot-2, so his parents thought his body was changing. And “show me a teenager who can’t sleep
12 hours a day,” Rukavina says.
Rukavina believes there were several points at which the disease might have been caught earlier. In the summer
before the diagnosis, a chiropractor noticed something on Ryan’s neck and said they might want to get the
family doctor to take a look at it. He was admitted to a hospital for chest pains but a doctor sent him home.
Finally, her husband took Ryan to the family doctor on Dec. 4, 2006, when they noticed what looked like golf
balls under his skin at the base of his neck.
He was admitted to the Hospital for Sick Children the following week. “The doctor said, ‘We can’t let Ryan go
home because his heart rate is 20 beats a minute and his breathing is compromised because the tumour has
wrapped around the windpipe and the large blood vessels leading to the heart.’
“I was numb. I just couldn’t believe it. It’s a parent’s worst nightmare. When you think of cancer, you think it’s
over. You think of it as a death sentence.”
Ryan is now 19. He completed his treatment in 2007. He is studying community and justice services at Humber
College and he is volunteering with Habitat for Humanity this summer.
“He’s really quite anxious to help people,” Rukavina says.
His odds of reoccurrence in the next 10 years are 50%.