Isolation, fear of the unknown nothing new for families of critically sick kids

In a year when many of us feel like we've been spending too much time at home, the Cole family of Maxville, Ont., wants nothing more.

Jesce Cole, 8, is fighting Ewing sarcoma, a rare type of cancer. He was diagnosed Boxing Day 2018.

In a few days, Jesce and his parents will spend their second Christmas at Ottawa's Ronald McDonald House, across the street from CHEO,eastern Ontario's children's hospital.

"He really wants to be at home. He misses his grandparents. He misses being at home, playing on his tree house and having all the fun stuff that he used to have," Jesce's dad Gregory Cole toldCBC.

Isolation and fear of an unknown disease have disrupted many lives this year, but those challenges are nothing new for critically ill children and their families.

For the safe havens to which those families turn, the challenge has beenchanginghow they operate during the pandemic.

Ronald McDonald Houses provide families of sick or injured kids with atemporary home away from home,so they don't have to contend with long commutesto hospitalon top of everything else. The atmosphere is supposed to feel homey and inviting, but when the pandemic hit, the charity was forced to rethink its communal setting.

'We just want to keep them safe'

"Normally, we are the place that keeps families together,"said Christine Hardy, CEO of Ronald McDonald House Ottawa. "[The pandemic has] been a lot harder on families who are already having such a hard time. They're already far from home, far from their families, and now they have to stay far from each other."

The 16 Ronald McDonald houses across Canada cut their capacity to help the families living there keep a safe distance from one another. In Ottawa, that means 11 families are currently in residenceinsteadofthe usual 14. Extended family members can't visit, and in most casessiblings are no longer permitted to stay.

"The kids that stay with us are already very sick ... we just want to keep them safe, and support their parents as best we can," said Hardy.

The homes are also operating without their usual contingent ofvolunteerswho come in to cook meals for families. Donations are down, too, up to 60 per cent across Canada, withmany fundraising events cancelled.

"We've had restaurants who have so generously dropped off meals, andwe've had a lot of nice gifts, but it's not nearly the same as when we can host a big event and ... raise a lot of money for the house," said Hardy.

Pandemic measures mean less support for families of sick kids

4 years ago

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Christine Hardy, CEO of Ronald McDonald House Ottawa, says the pandemic has made an already gruelling experience even tougher for families as physical distancing measures limit the support programs available to them.

Families asked to limit travel

Families are also being asked to avoid travelling back to their own homes while they're staying at Ronald McDonald House. The Coles have followed that advice, and haven'tset foot in their house since January.

"It does make it challenging because he likes to go out and do things. And with him being sick, and with the pandemic on, it's really hard because you're basically taking him out and you're jeopardizing his life to have him out," said Gregory Cole.

Cole said he's hopeful the community feeling at Ronald McDonald House willreturnonce the pandemic ends.

"I miss coming down and seeing all the kids at nighttime sitting on the carpet, or sitting in the chairs reading a book, or playing a game in the playroom ... and the interaction with all the other parents," he said. "It's been harder. Really hard."