'It hurt all over again': Family desperate for options after son rejected from clinical cancer trial

Richard Bourgeault and Nicole Fraser are running out of options to help save their six-year-old son's life.

Karter Bourgeault has an aggressive form of brain cancer and his family is hoping their story helps raise awareness as they fight to find a cure.

"We want people to be more aware, to push to get more funding," Nicole said. "Because you never know if it's going to happen to you."

Karter was diagnosed with diffuse intrinsic pontine glioma (DIPG) in July. It's a cancer that attacks the brain stem, making up 10 to 15 per cent of brain tumours in children.

"DIPG, among all the brain tumors in children, is probably the one that we fear the most," said pediatric neuro oncologist Lucie Lafay-Cousin. "It's actually a heartbreaking diagnosis to make and then disclose to the family."

According to the DIPG Registry, fewer than 10 per cent of children diagnosed with the cancer will survive two years after diagnosis. Because it's so invasive, Lafay-Cousin said it can't be treated surgically and the only options are palliative.

"Once we see those patients and then we get the diagnosis, it's [a] super hard discussion that we have with the parents about having to disclose that we don't have any cure," she said.

The Canadian Institutes of Health Research said, between 2012 and 2022, it has invested around $1.87 billion in cancer research, with around $941,000 going towards DIPG.

Richard and Nicole say that's not enough. In addition to more research and Canadian trials, they want to see more support for kids like Karter whose lives currently depend on experimental treatments.

Karter Bourgeault and his friend Hudson Blanchard (Credit: Bourgeault family)."The resources that [are] available in Canada, are nothing," Nicole added. "You have to go to the States for anything. It's mind boggling."

Recently the family spent thousands to travel to Washington, D.C., for a clinical trial, but Karter was ultimately rejected because of the placement of his tumour and the possibility of it being spread by the treatment.

"It hurt all over again," Richard added. "It was like being told all over again the first time."

The family isn't giving up and are waiting on another trial in New Jersey. It means tens of thousands of dollars in tests and travel costs but it's also their son's only hope right now.

"It's all for him, so we have to," Richard said.

"If there's a chance, then we're going to do it. We'll find a way," Nicole added.

Karter's parents said he has good days and bad days, but he is getting weaker. Despite that, he still enjoys school, his friends and cheering on his favorite players at Oilers' games.

"He's gone through a lot of changes, but we just focus on the positive and deal with what the negatives are as they come," Nicole added. "Push towards the positive because he needs positivity." 

With files from CTV News Edmonton's Jessica Robb