Belleville family dealt cruel blow as 2nd daughter diagnosed with incurable brain tumour

When she was just seven, Katie Grouchy lost her older sister to an incurable brain tumour. Now 19, Grouchy has been diagnosed with a similar form of the disease, and her brothers are undergoing tests to detect a possible genetic link.

Katie Grouchy, 19, diagnosed with glioblastoma multiforme, same type of cancer afflicting Gord Downie

Belleville family shares their thoughts on the second cancer diagnosis

6 years ago
Duration 3:28
Katie Grouchy, 19, diagnosed with glioblastoma multiforme, same type of cancer afflicting Gord Downie.

Katie Grouchy, 19, has already lived through the devastating effects of brain cancer once before.

In 2005, when she was seven years old, her older sister Holly died of a brain tumour at the age of 11. 

"It's not going to happen again, right?" Katie recalls thinking.

But then in June, 11 years after her sister's death, Katie was diagnosed with glioblastoma multiforme, a tumour in the same part of the brain as Holly's.

It's also the same disease afflicting Tragically Hip frontman Gord Downie.

A young Katie (right) with her sister Holly before Holly was diagnosed with a brain tumour. Holly died in 2005. (Katie Grouchy)

Glioblastoma is aggressive, and there is no cure. 

"It's just tough to go through because you see what it already did, and so I don't want to do the same thing to my family," Katie said through tears.

"Not that she did it on purpose, but I see what our family has already been through. And I don't want to make them redo that. So that's a little bit tough to think about."

Younger brothers now being tested

Katie's mother, Karen Grouchy, reaches over to comfort her daughter and reassures her that the family "doesn't think about that."

But she said the diagnosis is devastating.

"Nobody ever should do this once, and nobody needs to do it twice, either," said Karen from the family's home in Belleville, Ont. 

Researchers are now wondering if there might be a genetic reason for all of this, so they've taken blood samples from Katie's two younger brothers, Matthew, 16, and Andrew, 14, to see if they may be at increased risk.

Katie with her two younger brothers, 14-year-old Andrew (centre) and 16-year-old Matthew (right). (Katie Grouchy)

"Both tumours are exhibiting the exact same — in Holly and in Katie — the same missing proteins, which gives us the idea that maybe there's something genetically involved. But there's no proof of that yet," said Karen.

'Scary to think about it'

Doctors have been testing bits of Katie's tumour that were removed during surgery in July against old samples of Holly's tumour that have been saved at Sick Kids Hospital in Toronto.

"They're very interested, it seems, in our genes," said Rick Grouchy, Katie's father. 

Katie Grouchy had surgery in July to remove part of the tumour, followed by six weeks of radiation. (Katie Grouchy)

"It's kind of scary to think about it," said Matthew, who was only four when Holly died.

"I try to focus on different stuff. But at the same time, it's hard to focus on different stuff, and I just hope it works out," said Andrew.

Downie 'fabulous' for raising awareness, funds

In the last several months, the Gord Downie Fund for Brain Cancer Research has raised hundreds of thousands of dollars. 

"Which was fabulous," said Karen. "And if I could talk to him, I'd say, 'Don't stop, because we need more money.'"

The family said it watched Downie's final show in Kingston, finding it at times "too emotional."

Like Downie's prognosis, Katie's family knows hers isn't optimistic, so they don't focus on it.

The Grouchy family at home in Belleville, Ont., with a picture of Holly. (Hillary Johnstone/CBC News)
"I would say it's not a good prognosis, [but] there's no point looking at that," Rick said. 

"That doesn't make our days any easier and so we don't look at those things, Karen said.

Instead, they're focusing on some positive news: Katie has been accepted for a clinical trial for a new drug, an opportunity her father calls a "new hope."

'She's why I crawl out of bed'

For now, the Grouchys are taking things one day at a time.

"She's our fighter," said Karen. "And she's why I crawl out of bed, and those two boys. We have to, you know. This is the cards we got dealt."

Katie should have started her second year of nursing school this fall at Loyalist College in Belleville.

But she said she's not so sure anymore if that's what she wants to do — she's already spent too much of her life in a hospital.

"Just make sure you do what you're into," said Katie. "Don't waste your time, don't take it for granted. You might not get it."

Katie poses with her parents at her high school prom, before her diagnosis. (Katie Grouchy)


Hillary Johnstone is a reporter for CBC Ottawa. You can reach her by email