February 24, 2020

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Embraced by generosity, kindness

In April, life suddenly changed when parents noticed son couldn't smile

JOHN WOODS / WINNIPEG FREE PRESS</p><p>Jordan, Matthew, 10, and Clare Isaak. The family is seeking financial help through a crowdfunding campaign to pay for Matthew’s medication.</p>


Jordan, Matthew, 10, and Clare Isaak. The family is seeking financial help through a crowdfunding campaign to pay for Matthew’s medication.

Nine months ago, Matthew Isaak’s smile sank.

His dad Jordan noticed the change in the 10-year-old’s bright face on an April afternoon outside their south St. Vital home. Matthew couldn’t raise the right side of his mouth into his distinctive grin and fearing their boy had had a stroke, his parents called paramedics.

First-responders ruled out that possibility and alluded to something more insidious, Jordan recalls. An early diagnosis suggested Matthew had Bell’s palsy — a condition of the facial nerves that can cause facial paralysis, and in many cases clears up on its own.

At home, Matthew’s condition worsened. The young hockey player was constantly sick, the paralysis remained, and his motor skills were deteriorating. An emergency MRI exam revealed a tumour in Matthew’s brain. Just days after his birthday, Matthew would undergo brain surgery to biopsy the tumour.

"Imagine yourself at the age of 10 and being told someone is going to go into your brain," Jordan, a former member of the Canadian Armed Forces, tells a reporter visiting his home, with Matthew and mom Clare sitting close by on the couch.

"It was terrifying. He knows we’re scared. We’ve always been very honest with him, that’s one of the rules," he said.

The biopsy revealed the tumour was diffuse midline glioma. The inoperable form of cancer, which is found in children, is fast growing and can spread across the central nervous system through spinal fluid.

A full course of radiation treatment was ordered ("I’ve had too many doses," Matthew says), two more surgeries were required to insert a drain to move cerebral fluid past the tumour, as were steroids to relieve the pressure that formed in Matthew’s skull.

"It has massive side-effects, unfortunately," Clare says, explaining how Matthew’s body changed rapidly in just three months. The steroids have caused weight gain and muscle deterioration, and the tumour is squeezing nerves on the right side of Matthew’s brain, affecting eyesight and mobility, and causing constant nausea.

"He was just a little bit taller," Jordan says, pointing to photos of Matthew on the wall, playing and running. "That was just before the Bell’s palsy diagnosis… It’s so rapidly changed. Now he has back spasms all the time, and that’s just the physical changes."

Before the tumour, Matthew played hockey regularly and attended school at Ecole Marie-Anne Gaboury, which has been put on hold for the time being.

Model cars line the coffee table and shelves of the Isaak family living room, which was recently outfitted with a television and recumbent bike for Matthew.

He’s no longer able to manoeuvre the stairs to the lower-level den where he used to play his favourite video games. A walker is close by — he needs it to move around now.

SUPPLIED</p><p>Before the tumour, Matthew played hockey regularly which has been put on hold for the time being.</p>


Before the tumour, Matthew played hockey regularly which has been put on hold for the time being.

Treatment for diffuse midline glioma is limited and the prognosis is generally poor, but because doctors were able to perform a biopsy — a rare opportunity in this type of cancer — they could create a genetic and molecular profile of the cancer to guide his treatment.

Matthew is on a drug called Everolimus, prescribed by his doctors in Winnipeg, and is taking a slate of supplements that cost about $1,000 a month to manage symptoms.

The family started a crowdfunding campaign in August to help cover expenses related to Matthew’s treatment. They have already pulled in more than $20,000, though Jordan says that’s already been spent.

The support for Matthew from countless people and a number of local businesses has been overwhelming, the parents say.

Trans Canada Brewing, where Jordan works, and owner Matt Tallman have led the charge, Jordan says, and not surprisingly, folks from every corner of the city have pitched in.

"People have been so generous, so amazing, so kind," Jordan says.

"It’s great to have a community outside of what’s happening immediately here every day," Clare says. "It’s nice to be pulled out of it a little bit, but it also gives us a lot of freedom to do exactly what we need to."

The family is exhausting every angle of attack and hopes to have Matthew participate in an experimental drug trial in Rochester, N.Y., this winter.

"There’s no standard protocol anywhere. Everything is experimental to some degree," Clare says. "Whether it’s drugs that are available and typically used for other things, or full-scale trial drugs that aren’t on the market yet."

"If we can make it on this one and get the amazing results, we might have enough time to make it to the next series, and that one might be able to give us some hope, right," Jordan adds.

During the interview, Matthew insists on showing off his two favourite stuffed teddies.

The first, a Winnipeg Jets bear, was signed by his favourite players during an open practice he attended after he’d had surgery.

The second, resembles Rey Skywalker, the heroine of the latest Star Wars trilogy, who meets a growing darkness with courage and finds her strength in family and friends.

When Matthew squeezes her paw, the franchise anthem plays.

Matthew hasn’t yet seen the latest film in theatres — a recent bout of nausea has kept him home — but he plans to soon.


Danielle Da Silva

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