Kevin Chao is just like any other teenager. He loves playing video games and hanging out with friends, but instead of heading to math class, the Barrie teen spends his days in a hospital bed in his family’s living room.
There’s just one big difference between the 15-year-old Innisdale Secondary School student and his classmates, after having been diagnosed with Stage 4 osteosarcoma — a type of bone cancer that begins in the cells that form bones — in December 2021.
Doctors have told the family the tumour is simply too large and has progressed too much to be considered for surgery, says mother Melissa Brown. In an attempt to ease the pain caused by the tumour, she says Kevin has undergone several rounds of aggressive chemotherapy and radiation in an effort to shrink the cancer.
“They said it was just too big of a problem. The tumour is caking his sacrum and all of the nerves at the base of his spine and pelvis," she tells BarrieToday. "If they could have operated, it wouldn’t have left him with a very good quality of life and chances are 100 per cent that it would return as surgeons would not be able to remove all of the cancer.”
The family learned of the teen’s illness after he went to the emergency room with what they thought at the time was a blood clot in his leg, caused from a fall off of his skateboard several months earlier.
“In May 2021, Kevin fell off his skateboard and hit his pelvis on the ground. We went for an X-ray as he was complaining of the pain, (but) he was told he was fine and sent home," Melissa says.
Throughout the summer, Kevin continued to walk with a limp, which they assumed was a result of not having fully healed from the skateboard accident. Then, in November, Kevin noticed swelling in his leg.
“One day, I started getting really bad sciatic pain and my leg blew up, and that’s when we knew we had to go to the ER,” he says.
That was on Nov. 30, 2021.
On Dec. 1, Kevin had been sent via ambulance to Sick Kids Hospital in Toronto where doctors conducted several tests, and initially thought he had Stage 3 Ewing sarcoma. It wasn’t until after they conducted a biopsy that doctors realized how far the cancer had spread.
On Jan. 24, 2022, Kevin says they learned that his cancer had spread too far into his body and that it was terminal.
“I couldn’t really process what was happening," he says. "I couldn’t come to terms with a terminal illness. I couldn’t really think straight."
Since then, Kevin and his mother say they refuse to take anything for granted. And despite the challenges ahead, they continue to keep a positive attitude and smiles on their faces.
“It took a long time to come to terms with it. It still doesn’t feel real. We just enjoy every hour together. We have so many people praying for us … I can feel it,” she says, fighting back tears.
Although they know Kevin’s prognosis is not expected to improve, the support from their friends and family — and even strangers — is helping them cope.
“We just put our heads down and keep swinging,” says his mom.
Prior to his diagnosis, the family loved to camp, travel and hike together. And if this cruel twist of fate has taught them anything, it’s to never hold off on doing the things that make you happy.
“Kevin was also diagnosed with an eye condition that ultimately would have made him blind by the time he’s 30," Melissa says. "He wasn’t dealt a very good hand, but once we found that out, we started doing things. I wanted him to experience things while he could still see it.”
One of the big things that was on their bucket list was to go white-water rafting, but Melissa was waiting for her youngest son, who is eight years old, to get a little bit older so that he could join.
“We waited too long. You have to do things while you can do them. You never know what’s going to happen,” she says.
Kevin is also not letting the fact that he is hooked up to a variety of different tubes get in the way of doing some of his favourite things. While skateboarding is now off the table, a video-game system sits close by, as well as a microphone so that he can create songs when creativity strikes.
“I love music. I make music and one of my songs has even been played on the radio in Ireland. Growing up, I’ve played a lot of video games. I am just a normal kid … who has cancer,” he says.
He’s even managed to create quite the following on TikTok over the last few months, where he’s shared his music as well as his cancer journey.
“My sole purpose doing it was to have videos my family could see in case I died. I started getting a lot of views and ended up with thousands of followers," Kevin says. "The content I make is just my cancer journey and stuff … but in my biggest video I asked TikTok to spread the word that I wanted this new video game, but I didn’t know if I would make it to the release date … That got 200,000 views.”
Although the gaming company ultimately declined to send him the game, it did inspire his fellow Innisdale students to host a fundraiser to help raise money for the family. The recent charity hockey game raised approximately $1,000. Although Kevin was unable to attend, he was there in spirit and watching via FaceTime thanks to his mother and brother who attended on his behalf.
“It’s amazing that a community can do something like that," Kevin says. "I am really thankful for everybody that was showing support."
Melissa says the initial plan was for the school to host a “K Day” and for students to dress up in red and blue, like Spider-Man.
“It all started because Kevin is this fabulous TikTok'er now and was trying to get Insomniac Games to release their new Spider-Man game early to him because he doesn’t know if he’s going to live until the fall," she says. "It really blew up and that’s how the student council got involved.
"But the day they’d planned it was a snow day. They redid it as part of this hockey game.”
Seeing all of those people looking out for him meant a lot, Kevin says.
“I know I have a lot of people rooting for me. It was just crazy to see how many people were there," he says.
Money raised through that event will help cover some of Kevin’s medical bills, says Melissa, who told BarrieToday he recently became one of the first pediatric patients to have an intrathecall pump — otherwise known as a pain pump that delivers medication directly to the fluid surrounding the spinal cord — surgically implanted in his stomach to control his pain.
“In the fall, no pain meds could touch his pain at all," she says. "He was lying in the bed and he couldn't even move a centimetre without being in excruciating pain, so Sick Kids and Toronto Western Hospital collaborated and Kevin is one of the first few kids to have this thing."
It’s been life-changing for him as it allows him to move around even just a little.
“There’s a ramp outside for a reason because he can move around," Melissa adds. "He would not have been able to do that before this pump.”
There’s just one problem. The medication in the pump needs to be refilled every six weeks, which requires Kevin to travel by ambulance.
“We all thought OHIP would cover these transport rides … but it’s like $1,000 for an ambulance ride down there," says his mom.
Despite being on a slew of different pain medications, Kevin says he's happy that it allows him to continue to do a few of the things he enjoys.
“At least I can do stuff that I like and it makes my life sort of normal,” he says.
Kevin also has some advice for people.
“Life is really short. Just have fun before anything happens because you never know when, in the blink of an eye, when there could be a car crash or diagnosed with cancer. It’s something I wish I had done before.”
