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Trends in childhood illness stretch Ronald McDonald House charity

Brothers Oliver and Jax playing with the frog puppet in May 2010 at the Aberdeen Hospital in New Glasgow, while Oliver was receiving a blood transfusion.

Kaitlin Graham

Oliver had chubby cheeks, a curlicue smile and a fervent love for Thomas the Tank Engine. When cancer came for him, these regular details of a toddler's life were overwhelmed by treatments, pain and long bouts in the hospital – and so was his family's life.

His father, Drew Graham, recalls leaving work and travelling more than 150 kilometres from their home in Pictou County, N.S., to be close to the hospital in Halifax. All he could think about was the cancer. But at night, after he would tuck in his older son, Jax, he would see other sleepless parents in the kitchen at the Ronald McDonald House where they were staying.

"You're kind of like ships passing in the night," he said.

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The Graham family's story is the inspiration for an advertising campaign that will launch Wednesday, meant to help Ronald McDonald House complete an expansion that will see it grow from accommodating roughly 10,000 families struggling with serious childhood illnesses to twice that by the end of next year.

Changes to the way childhood illnesses are treated mean death rates have fallen significantly, but that also often means more recurrences, longer stays, and more gruelling treatments. When the first house opened in Canada three decades ago, an average stay was four to five days; now, it's up to 27. More than half of the families these days have multiple stays.

In addition, complex treatments are moving more and more to hospitals in major centres. This places a major financial burden on families and a problem of accommodation for those who need to travel for a child's care; one the health-care system cannot manage for them.

A 2010 study from the University of Toronto surveyed 99 families of children with cancer in Ontario to determine the out-of-pocket costs, such as finding a place to stay while a child is receiving treatment. It found that the total mean expenses, just in the first three months of diagnosis, were $28,475.

The desire to alleviate more of this burden is what drove the expansion. In 2011, according to the charity's research, there were 297,538 pediatric hospitalizations in Canada, and about 23,000 of them were for the kind of serious conditions the houses usually see. But the charity could only accommodate about a third of those patients' families that year. By the end of 2014, the organization hopes to increase the number of Ronald McDonald Houses from 12 to 14, and increase the number of in-hospital and in-house family spaces from 215 to 520.

Parents say the value is immeasurable. During his late nights awake, worrying for his son, Mr. Graham would hear stories of transplants, or a family worrying about a child who had lost a limb.

"It hit me like a ton of bricks," Mr. Graham said. "As bad as you think you have it, there's always others going through something … I don't think people realize how important communal bonding is."

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In one of the new TV spots, a pair of worried fathers give a knowing nod to each other at side-by-side fridges as they grab a late-night snack. The campaign – which includes ads across all media – is the largest yet for the charity in Canada.

There is a good reason why medical care has been centralized, even if it means more families have to travel for care. Terry Sullivan, a consultant, faculty member at the University of Toronto and chair of the advisory committee on system performance and quality initiatives for the Canadian Partnership Against Cancer, said smaller hospitals simply don't do specialized procedures as frequently as is ideal. "You don't have sufficient clinical skill among everybody who cares for those kids, and you tend to have slightly poorer outcomes in low-volume centres for many complex procedures," he said. This is not the case for all procedures, Mr. Sullivan said, but it does help explain why centralization has increased for more complex treatments.

Better quality care is essential; but centralized treatment can make it difficult for another key part of a child's recovery: having family nearby.

And families also benefit from being close to others going through the stress of a sick child. During a recent visit to the house in Saskatoon, Cathy Loblaw, president and CEO of Ronald McDonald House Charities Canada, noticed that the tables in the communal kitchen, which are usually spaced out for each family, had been pushed together; something the families had done so they could eat together, a staffer explained.

"It's amazing to see the community that emerges among the families in the house," she said.

Oliver's story did not have a happy ending. He passed away in June of 2010 at the age of three. "I miss my son to death," Mr. Graham said.

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He was overwhelmed to learn that the charity's ad agency, Cossette, had based part of the campaign on his story, and that the letter of thanks he wrote to Ronald McDonald House in 2011 had led it to additional personal stories from real families in the other ads, and to make family the centre of the entire campaign.

Telling his story "is really helping me keep Oliver alive in my own way," he said. "It's hard to describe. My story is one of millions of stories. And every last one of them is just as important as the next."

 

28%

Percentage of total medical treatments relating to oncology that bring children's families to Ronald McDonald House (Canadian national average). It is the leading cause, followed by premature babies/NICU (27%), heart/lung (21%) and surgeries/transplants (10%).

1981

Year the first House in Canada opened.

$14-million

Total cost to operate Ronald McDonald Houses in Canada in 2013, up from $5.6-million in 2009.

$11

Average cost per night for a family staying at a Ronald McDonald House, depending on financial ability.

70%

Turn-away rate can reach as high as 70 per cent at some Houses.

100%

Costs associated with running the organization's national office covered by McDonald's Corp.

50-60%

Costs associated with operating the Houses that rely on donor support

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