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“If you are a family in crisis and you are trying to figure out how to pay your bills and keep your home, it’s very difficult,” says Mornar. “I had a father who came to me with a brand new Gund stuffie (plush toy) someone had donated. He asked if it would be possible to sell it. The family needed groceries.”

Photo by NICK PROCAYLO / PNG

Mornar’s son Jonathan was diagnosed with neuroblastoma at age six and died at the age of 12 after multiple cycles of treatment and remission. Mornar had decent benefits; he thought the family could manage.

He was wrong. “Six months after Jonathan was diagnosed things started closing in on us. I went to the bank to tell them I couldn’t make the mortgage payments. The banker looked at me and said, ‘Well, sir, a gentleman just came in and paid your mortgage for a year.’ ”

That unexpected gift gave the family an opportunity to breathe as they negotiated the complex challenges of Jonathan’s treatment.

More than a decade later, Mornar’s daughter was diagnosed with a brain tumour and the journey began again.

Photo by Courtesy Mornar family

The gaps, says Mornar, are everywhere. From lost income to non-medical home supplies like feeding tubes, travel expenses for families that live both near and far to new drugs that are not covered. The average treatment length for childhood cancers is one to three years. When a child is stricken with cancer, one or both parents almost always have to leave their jobs.

The Canadian Cancer Society partnered with the Canadian Cancer Action Network on a study in 2009 that called for more income stability for families of cancer patients through an extension of the Compassionate Care benefit from 26 to 52 weeks when necessary, access to CPP disability benefits and direct financial support through other federal programs.

Seven years later, little has changed, says the cancer society’s Crawford.

“We hear this repeated refrain: Yes, we want to invest in research and we need the hope that is delivered by the search for new treatments, but families coping with a cancer diagnosis are being hit with a semi-truck that no Canadian expects or thinks much about,” she says. “There are very few families that can weather a cancer diagnosis without being financially affected. The cancer burden is falling on Canadians and we have an obligation to help them.”

Crawford is calling on the federal and provincial governments to work together to remedy the situation. “This is a systemic problem and the system is failing to help us when we need it most.”