6-year-old with rare, terminal cancer donates $14K to CancerCare Manitoba doctor

Posted on June 29, 2024 by Peggy

Gordie White has the energy of any six-year-old, bouncing around and telling stories to anyone who’ll listen, often about Star Wars, but his biggest story sets him apart and gives reason to celebrate everything he does.

Gordie is fighting a rare, inoperable and aggressive type of childhood cancer that forms in the brain stem.

“It’s a mass in his nervous system. It’s inoperable because it’s a spiderweb in all of his nerves,” said his mom, Sarah White. “Right now the only actual treatment is radiation, and that’s just to buy time.”

But what he’s done in that time so far is cause to celebrate, including raising $14,000 to find treatments.

Diagnosed with diffuse intrinsic pontine glioma in February 2022, Gordie was initially was given eight to 11 months to live.

Two weeks later, he started radiation treatment, and now, two weeks past his sixth birthday, Gordie is among the 10 per cent of kids with DIPG who live longer than two years after diagnosis, the DIPG/DMG Resource Network says on its website.

A mom and dad kneel down and pose together with a little boy and little girl. — Gordie White, middle, poses with his little sister Molly, left, dad, Ryan, and mom, Sarah. (Jeff Stapleton/CBC)

“He’s doing great, but he isn’t out of the woods,” White said.

DIPG is terminal.

“What it does is it eventually shuts him down. He will not be able to walk, talk, breathe, eat on his own.”

But for now “he’s getting to be a little boy and currently a very healthy, happy little boy,” White said, as Gordie entertained staff at Winnipeg’s Cancer Centre for Kids on Thursday.

He was there to present a cheque for $14,000 to his doctor Magimairajan Issai Vanan for research in DIPG treatment.

“His goal is ultimately to find a cure,” White said about Vanan. “The funding is short, it’s lacking; that’s why it goes strictly to him, so that he can keep working in the lab to try and help save our son.”

A little boy in a baseball cap — Gordie White regales staff with stories at CancerCare Manitoba’s Cancer Centre for Kids on Thursday. (Jeff Stapleton/CBC)

The money was gathered through a couple of fundraisers in Brandon, where the family lives. It’s where dad Ryan is an instructor at the Western Canada Hockey Academy, home to teams named Wolf Pack.

The WCHA created T-shirts for sale, called Gordie’s Wolf Pack, with a quote on the back from Star Wars Jedi Master Yoda: “Do or do not. There is no try.”

“We say this a lot to Gordie to keep him positive,” White said.

Sales of the shirts raised half of the donations, which the family hopes to keep collecting.

“We know every other family’s not as fortunate, so we’re trying to get some more money here for people that can get the same treatment we’ve been getting and make it available so we can save some more kids,” White said.

“Everybody who’s dealing with this needs help.”

A little boy talks to adults — CancerCare Manitoba staff lean in to hear Gordie’s stories. (Jeff Stapleton/CBC)

Only 20-30 children are diagnosed with DIPG each year in Canada, according to Toronto’s Hospital for Sick Children, and about 300 are diagnosed in the U.S., where treatments are slightly more advanced.

Gordie is part of a U.S.-based clinical drug trial and the family needs to travel there regularly.

“That’s why we’re trying to keep the money in Manitoba, so that we can do something here in Canada, so we don’t have to take him all the time,” White said. “But the clinical drug, we believe, is saving his life right now.”

Sarah and Ryan White praised Vanan for the research he is conducting in his lab and everyone who has helped in the fundraisers.

“We’ve had a very good community of people support us through all this, and Dr. Vanan’s been our new hero in our family,” said Ryan, a former NHLer who was drafted in 2006 by the Montreal Canadiens and who also played for the Philadelphia Flyers, Arizona Coyotes and Minnesota Wild.

“We’re just trying to enjoy every day and make the most of every day. We’ve got a young family that’s getting to spend extra time together than we imagined. We’re trying to enjoy every second of it.”

Strangely enough, Gordie’s diagnosis came out of another illness. The entire White family, including Gordie’s little sister, Molly, tested positive for COVID-19 in January 2022.

A couple of weeks later, the right side of his mouth started to droop and his speech started to slur. A CT scan and MRI detected the tumour.

“The first year was a lot tougher, when we thought every first [experience] was his last. But we have a lot more hope than we ever did two years ago,” Sarah said.

“We never thought we would be [where we are]. We never thought he would go to school.”