Family of 4-year-old Brandon boy battling rare brain cancer cherishes time together

A western Manitoba family is not giving up on their little boy as he continues his uphill battle with brain cancer.

Four-year-old Gordie White wasdiagnosed with diffuse intrinsic pontine gliomainFebruary, and his parents, Sarah and Ryan White, were told the survival rate for the rare cancer was nearly zero.

Only about 300 children in the U.S. are annually diagnosed with what's better known asDIPG.

"It's a monster, but there's hope," Sarah said.

The entire White family, including Gordie's baby sister, Molly, tested positive for COVID-19 in January. Gordie didn't have any symptoms of the virus, according to his mother, but two weeks later the right side of his mouth started to droop and his speech started to slur.

Sarah thought Gordie had developed Bell's palsy, which is an unexplained instance of facial muscle weakness or paralysis. Steroids fixed it, but onlytemporarily.

A couple of weeks later, Gordie's symptoms returnedmore aggressively, prompting Sarah to take her son to the hospital in Brandon.

After a CT scan in the Wheat City, Gordie had an MRI scan at a Winnipeg hospital the next day. That's when Sarah and Ryan were told ofGordie's diagnosis, and that he might only have eight to 11 months to live.

"It was a lot of information in a very short period of time trying to figure out kind of what everything was," Sarah told CBC News Monday.

Two weeks later, Gordie began radiation treatment asleep each time because he's too young to be awake during the procedure.

"We called it a picture for him," Sarah said.

Gordie had apicture taken his radiation treatment 30 times over a span of six weeks.

"It was a lot on him. He did amazing. He never really wavered," Sarah said. "You'd never really know he was getting radiation done."

Since the radiation concluded about eight weeks ago, Sarah said Gordie gets tired more easily. He also might be slower than the average four-year-old, she added.

The family recently returned fromatrip to the Walt Disney World Resort in Orlando, Fla., organized through The Dream Factory in Winnipeg.

Ryan, a former Brandon Wheat King who played in parts of eight NHL seasons with the Montreal Canadiens, Philadelphia Flyers, Arizona Coyotes and Minnesota Wild, said Gordie paid a price physically to get to where he is today his fourth birthday but the time they spent on the trip has been so precious.

"It's been really special here the past couple of weeks and really getting to see him as himself," Ryan said.

"He's at a good point right now after his treatment, and the reduction in his tumour has allowed him to become more like himself every day, and we're seeing him be himself, which is great," he said."We're just trying to hold onto that for as long as we can."

Ryan said the support from former teammates, coaches and competitors, and throughout the hockey world the past few months has been incredible. He and Sarah are very thankful for all the support.

If Gordie's tumour doesn't grow in the six months past his last round of radiation, he could be eligible for another round. However, the tumourcould come back more aggressively.

In the meantime, Gordie is undergoing alternative treatments, with hopes that Sarah and Ryan can buy more time with and fortheir son. The family is also planning a trip out to western Canada this summer.

Their message for other parents who have kids with DIPGis not to give up.

"When we first got told there was a zero per cent survival rate it kind of seemed like an ending, but as the weeks went on and we started doing our research, we found an outlet to buy us time to hopefully find another treatment, or hopefully a cure," Sarah said.

"Don't let a day go wasted, which is something we might have done before," Ryan said. "Makesure to take advantage of it."

Ryan and Sarah have petitioned parliament for more funding for research of the disease. They hope that even if they are unable to save their son, they might be able to help save someone else's child.

WATCH | Ryan and Sarah White speak with CBC's Janet Stewart:

Brandon boy battling rare brain cancer cherishes time with family

2 years ago

Duration 4:16

Four-year-old Gordie White was diagnosed with a rare form of brain cancer in February.