Katie and Grant Price take their daughter Eliza and her brother, 3-month-old Thomas, to his appointment at SickKids Hospital in Toronto on Dec. 8.Jennifer Roberts /The Globe and Mail
Just over a month ago, the only thing on Grant Price’s mind was enjoying his new baby boy, Thomas, and celebrating his daughter Eliza’s third birthday. But it was at that birthday celebration where family and friends remarked on the baby’s pale complexion. Mr. Price and his wife, Katie, had also noticed Thomas’s belly button was protruding and that he was fussier than usual.
Concerned, they took Thomas to their local hospital in Orillia, Ont., where an ultrasound revealed a tumour. “We were in shock,” said Mr. Price.
Thomas was rushed to Toronto’s SickKids Hospital by ambulance, where he was diagnosed with neuroblastoma of the adrenal gland, a type of pediatric cancer that starts in the nerve cells, which had spread to the liver. The family spent three weeks by his side as he received chemotherapy. He has just finished his second round of treatment, having turned three months old.
Beyond the terrifying diagnosis, the Price family has been forced to deal with the unpleasant financial reality of having a very sick child – the fallout from when parents can’t work and face unexpected food and accommodation costs, and unforeseen medical bills. Mr. Price says that over the past month, the family has had to spend money on gasoline between Toronto and Orillia, restaurant meals and hospital parking.
“I’m still off work,” said Mr. Price, a nurse, adding that he’s using his vacation time. His wife Katie, also a nurse, is on maternity leave. “We make a pretty good income, but we have student loans,” he said, adding the couple are worried about paying rent on their two-bedroom apartment, as well as daycare costs.
“A few weeks of this and you’re out thousands of dollars,” he said.
The costs of managing a child’s illness
Most medications, treatments and assistive devices for children are covered under provincial health plans. However, there are gaps, as Sarah Bankuti discovered when her 10-month-old daughter was diagnosed with a brain tumour four years ago. As a result of the tumour, her daughter Alice, now 5, required multiple eye surgeries and prescription changes to her glasses.
“Alice has to go to get her eyes checked every three months, which is $150 for the visit,” said Ms. Bankuti. “She just had another prescription change last week and that was also $150.”
Due to long wait times, physiotherapy and rehabilitation programs are other services that parents often pay for to get timely access to care.
Another major gap is psychological care, says Patrice Lindsay, lead for engagement and stroke strategies at the Heart and Stroke Foundation of Canada. “Kids often have significant psychological issues when they have a critical illness,” she said. “And in many cases psychological services aren’t available – wait lists are long.”
Ms. Bankuti’s family, like many, has paid the price for having a sick child. “We’re in debt,” she said, adding she cannot work due to Alice’s frequent hospital visits. The family recently moved from Toronto to her mother-in-law’s home near Newmarket, Ont.
To make ends meet, families such as Ms. Bankuti’s rely on a number of charities – organizations such as the Pediatric Oncology Group of Ontario, Ontario Parents Advocating for Children with Cancer and Starlight Children’s Foundation Canada – that provide vouchers for food court meals, tickets to popular attractions and gift cards for groceries. Children’s hospitals across Canada also refer patients and their families to childcare services and connect them with hotel discounts and respite care.
The Price family has benefited from accommodation and meals at Ronald McDonald House Charities (RMHC), which set them up with a two-bedroom apartment, a street parking pass and grab-and-go meals. The Prices estimate the charity saved them $5,400 in the past month. “I don’t know what we would have done without that,” said Mr. Price.
An RBC Economic Impact Study found that families with children requiring care at SickKids would incur costs of up to $20,172 a month if both parents and three children stayed in Toronto for 30 days. This represents 26 per cent of an average Ontario family’s disposable income over a year.
“Travel, food, laundry, parking, meals – the implications of these costs are significant,” said Kate Horton, RMHC’s chief executive officer. And although programs such as RMHC exist – it has 16 houses across the country – many families are turned away due to excess demand.
Providing a security blanket
While saving for a child’s possible illness seems unthinkable, financial experts suggest having money set aside. “Saving three to six months’ worth of expenses in a TFSA would provide a meaningful buffer,” said Brian So, a life insurance adviser and certified financial planner in Vancouver.
Another option is to buy life insurance for your children. Mr. So says some of his clients buy whole life insurance for them and treat it as an asset class, such as stocks and bonds. “The policy pays dividends, increasing the death benefit and cash value over time. By the time they are adults, they can access the cash value to pay for their education, as a down payment for a home, or to start a business,” he says. Monthly premiums for a child’s policy are usually $4 to $12 a month.
Mr. Price says he doesn’t own insurance. He’s currently relying on a GoFundMe web page set up by a family friend, along with RMHC’s continuing assistance. “I may go back to work in a week,” he said. “It’s been a real challenge.” But he’s buoyed by his son’s latest report. “The chemo seems to be working – his stomach has shrunk and he’s eating.”
“They’re quite optimistic about his prognosis,” Mr. Price said.