Ronald McDonald House and the challenges of keeping a family together during cancer treatment

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On Sept. 19, Jacey Schlosser took her son to the emergency room at Red Deer Regional Hospital Centre because he was complaining about a “pain inside his head,” which seemed quite unusual for a four-year-old.

Within hours, she and the boy were in an ambulance en route to the Stollery Children’s Hospital in Edmonton, where he was diagnosed with acute lymphocytic leukemia (ALL).

Since then, Daxton has been undergoing chemotherapy and living with his mom in the nearby Ronald McDonald House, while his father and sister have stayed home, commuting for some together time on weekends.

“If this place wasn’t here, I have no idea what we would do. I would absolutely be lost – and broke,” Ms. Schlosser says.

Just before Christmas, the family learned Daxton is in remission, the best gift ever. But the ordeal isn’t over because the boy will return for follow-up treatment in early January.

Canada has universal health care, meaning hospital and physician care is provided at no cost. But patients and families have to fend for themselves when it comes to travel, accommodation and related expenses.

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That can be a tremendous burden, financially and emotionally, especially when you have a child with a life-threatening illness who needs months of care that is offered only in a small number of urban centres.

In Canada, the only organization offering accommodation and respite to sick children and their families is the network of 15 Ronald McDonald Houses and another 17 family rooms in each of the country’s pediatric hospitals.

“We take care of the family so the hospital can take care of the child,” says Cathy Loblaw, chief executive of Ronald McDonald House Charities Canada.

On any given day, there are 525 families living in the homes, almost 27,000 a year – but they can’t keep pace with demand. Last year, more than 7,000 families were turned away for lack of space. (Each house has an assessment committee and distance from home is one of the key determining factors.)

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Karima Karmali, director of the Centre for Innovation and Excellence in Child and Family-Centered Care at the Toronto Hospital for Sick Children, says there are a number of factors driving increased demand, including growing complexity of care, the push by hospitals to decrease length of stay and much greater expectations placed on parents to be active participants in their child’s care.

“When your child gets a devastating diagnosis, your world is turned upside down and you need some stability,” she says. “The homes provide private accommodation, home-cooked meals, schooling, wellness programs and much more.”

Ms. Karmali says that without the temporary housing provided by RMHC Canada, parents try to sleep in hospital rooms or resort to living in their cars, and their health and relationships suffer.

One study found that in the first three months after a child is diagnosed with cancer, parents incur an average of $28,475 in out-of-pocket costs. A big chunk of that is living expenses near the hospital.

At Ronald McDonald House, parents pay about $11.50 nightly – compared with about $150 in a hotel – and that includes a private room, meals cooked by volunteers and numerous activities to keep the kids, including siblings, busy.

But the intangibles, such as commiserating with other parents and her son having other kids to play with, are just as valuable, Ms. Schlosser says. “The other parents don’t pity you, they understand you, because we’re all going through the same thing.”

The first Ronald McDonald House was built in Philadelphia in 1974, an initiative spearheaded by Audrey Evans, a legendary oncologist, who teamed up with the owner of the Philadelphia Eagles (whose child survived cancer) and convinced McDonald’s to donate the proceeds of its shamrock shakes. Now, there are 373 Ronald McDonald Houses in 64 countries.

“It started as a nice thing to do and now it’s become an essential service,” Ms. Loblaw says.

That’s especially true because two-thirds of patients live outside a city with a children’s hospital, the average stay is 14 days and more than half the families make return visits because treatments can stretch out over months and years.

The annual budget for RMHC Canada is $31.2-million, with McDonald’s Canada covering about 35 per cent of the total. The fast-food giant also underwrites the charity’s operating costs and tug-at-the-heartstrings ad campaign. Most donations come from McDonald’s customers and corporate partners, and initiatives such as McHappy Day, which raised $3.6-million last year.

One of the big challenges though is capital costs. RMHC Canada has gone to 525 beds today from 213 beds in 2010 and plans to hit 800 by 2025. That will require $165-million in new investments.

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“As care changes and the needs of children and their families change, we need to reimagine the pediatric care system,” Ms. Loblaw says. And part of that reimagining requires asking whether gravely ill children need to depend on charity for their care.

What is not in question is how much families depend on and appreciate it when accommodation is provided.

At the Children’s Hospital of Eastern Ontario (CHEO) in Ottawa, there is a tradition that patients ring a bell when their cancer treatment is complete and they are in remission.

On Dec. 19, Aspyn Carroll of Pembroke, Ont., rang the bell. She and her family spent 10 months living in the Ronald McDonald House in Ottawa while she underwent treatment for leukemia.

Her father, Tom Carroll, says being close to their daughter allowed them to be a “normal family in abnormal times.

“The nurses and doctors at CHEO saved our daughter’s life, but Ronald McDonald House saved our family.”