Published May 3, 2023

'Live your life,' says Barrie teen with terminal cancer

Kevin Chao must make a costly trip by ambulance to Toronto every six weeks to have his pain medication refilled

A tumble from a skateboard in May 2021 sent a Barrie boy on a medical journey for which Kevin Chao and his mom, Melissa Brown, could never have imagined.

After a trip to the emergency room, Kevin was told he was fine.

There was not a complete healing and in late November Kevin says his leg swelled up.

The next day, on Dec. 1, following a series of tests at Sick Children's Hospital in Toronto, Kevin was told he had cancer.

"They told me that I had a very big tumour that was pressing on my kidney," he explains.

Kevin began chemotherapy and radiation treatment, but a few weeks into January 2022, he was told that his condition was terminal - Stage 4 osteosarcoma.

At age 14, Kevin says the diagnosis was too much to sink in.

"I didn't really process it for like a year and a half," he says. "I didn't really understand what was happening."

Melissa also struggled.

"It took a long time to come to terms with it as well. I was really upset as anyone would be, but you just have to keep going," she says. "Some days are worse than others."

The Innisdale Secondary School student, now 15, is grateful for the love and support from his classmates.

About $1,000 was raised during a charity hockey game, which Kevin was unable to attend, but kept tabs on via Facetime.

Melissa says several teachers organized a group to visit their home over Christmas and sing carols. Kevin also has a music teacher who comes over to the house once a week to give him lessons in the living room.

Like any teenager, Kevin loves video games, and he has a TikTok account in which he shares his love for creating music and documents his cancer journey, and the number of followers is in the thousands.

The Weekend and Eminem are top of mind when he is asked to name some of his favourite singers.

"Music has inspired me because even though I have this terrible disease I can still do things that I love."

Evenings are very special to Kevin. That's when his grandfather visits to play video games, and they do a daily TikTok live at 8:30 p.m.

Prior to last fall, Kevin was in excruciating pain from tumours pressing up against his spine, and it left him confined to bed.

Doctors at Toronto Western Hospital and Sick Children's Hospital joined forces, so Kevin became one of the first young patients to have a pain pump ---known as an intrathecall pump -surgically implanted into the stomach that delivers medication to an area surrounding his spinal cord.

"Once he got the pain pump inserted, it changed his whole life," says Melissa. "He could move again, walk around the house with assistance. He is just a happier boy because he is not in excruciating pain anymore."

But there is a financial cost that Melissa struggles with.

Every six weeks, Kevin and Melissa have to go to Toronto Western Hospital to have the medication refilled.

It means a trip by ambulance at a cost of about $1,000.

For the first few times, the tab was picked up by the hospitals, but that has stopped and there is no OHIP coverage.

Melissa says they have received some financial support from the Jennifer Ashleigh Children's Charity, but she doesn't want to blow through all of it.

"What we are really trying to get at this point is if there is somebody in Simcoe County who can be trained on how to deliver the medication through this pump. It's just through a needle and nothing crazy," she says. "A thousand dollars every six weeks is really hard, especially for people that don't work."

Both Toronto Western and Sick Kids are understanding, says Melissa, and initially they didn't think the medication would require as much replacement so often.

With the pain medication giving him some control over his life, Kevin pushes on with his music and videos and he encourages everyone to never take anything for granted.

"My best message is to be sure to live your life while you can because anything can happen at any moment. Just do things you enjoy and don't let anything stop you."

Banner image - supplied - Melissa

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