This story appeared in The Globe and Mail.
Shane Byers of London, Ont., fundraises every year for Light The Night, The Leukemia & Lymphoma Society of Canada’s flagship event. He does so in honour of his daughter, Kayla, who was diagnosed with leukemia at age 18. Here is Kayla’s story, in Shane’s words:
In the summer of 2018, my 18-year-old daughter Kayla went on a camping trip with her mother, Kirsten Wales, and some friends. She developed bruises on the back of her legs, which was unusual, so they decided she would see a doctor when they got back.
When the results of her blood tests came in, the doctor called and said, ‘We need to get her back in right away.’ That same day, August 22, she was admitted to Victoria Hospital in London, Ont., and by the evening it was confirmed: She had acute lymphoblastic leukemia (ALL).
‘It’s highly treatable,’ a doctor told me that night. He told me the success rates were very good. (The five-year survival rate for ALL is 90 per cent, with about half of people relapsing.) He told me that medical science had come a long way since I was a child.
I stayed that night in Kayla’s hospital room, sleeping in a chair next to her bed. She wasn’t feeling sick yet. The next day was a full day of tests, and the following day she started chemotherapy.
Those next few weeks were rough. There were so many decisions to make, often around treatment and how it could have consequences for her life. She didn’t hesitate. She took things head-on.
Kayla was an incredible person – gentle, hardworking, intelligent and compassionate. She was about to attend the University of Waterloo for environmental studies and had been working all summer at Domino’s Pizza. Before her diagnosis, she would get up at four in the morning to join the London Western Rowing Club out on the water. She loved animals and volunteered at a nearby wildlife rehabilitation centre.
As the days passed, she gradually got more and more sick from the chemotherapy. She lost her hair and felt very nauseous. She was never alone; there was always family and friends with her – either me, her mom, her stepdad Luke or someone else. I remember a tough moment when September was approaching and we had to make the decision that Kayla would not be going to Waterloo.
One day in early September, she had a really bad day. She had a blood infection and it was excruciatingly painful. The next day, her mother and I stayed with her as she tried to deal with the pain; she had painkillers, but they didn’t help much. I said goodbye in the evening to go home to get some rest, as she seemed to be doing better.
I got a call around 2:00 a.m. It was Kirsten, saying that Kayla’s heart had stopped.
I jumped in the car and sped to the hospital. When I arrived, Kirsten was waiting for me in the parking lot. She told me they’d transferred Kayla to critical care.
They let us in to see her at 4 a.m. It was horrible. They’d shine a light in her eyes and they were completely unresponsive. That was the moment I kind of dropped inside. Before that, I thought things were bad, but that they would turn out all right.
Kayla did not wake up again. We were hoping for a change or a miracle. But after a few days, we had to make a decision about life support. We did not want her in the hospital hooked up to machines. We ceased life support on September 9, just three weeks after her diagnosis of ALL.
The doctor treating Kayla told us later that what happened still haunts him, that maybe he missed something, that she shouldn’t have died from a blood infection. But there’s no doubt in my mind that if she hadn’t gotten leukemia, she’d still be here today.
While Kayla was in treatment, we heard about The Leukemia & Lymphoma Society of Canada (LLSC) and their Light The Night event, Canada’s largest fundraising event that culminates in a night of celebration each year. Everyone jumped on board, creating Team Kayla Hope to support her and her treatment – Kayla’s middle name was Hope. But it took on a new significance now that she was gone.
We decided to channel our grief into something positive. We raised more than $47,000 that year, with Domino’s giving us $15,000. It was cathartic to be part of a public outpouring of support around what we’d just been through.
This year will be my fifth year of attending Light The Night; I’m now the corporate chair for the London area and I’m on the executive committee for Light The Night in London. Team Kayla Hope has raised about $85,000 for the LLSC. This year, we’ve partnered with the London Majors, the local football team, and are running events with them to raise money and awareness.
The LLSC doesn’t have the same profile as some of the other big health fundraising organizations. Part of our work is helping people understand what the LLSC does and how it puts donation dollars right into research. This funding, over time, has led to cancer treatments that are on the market right now, not just for blood cancers, but all cancers.
What happened to Kayla was so heartbreaking for me and my family. I was lost for a long time afterwards. It’s been so meaningful for me to be part of the LLSC and ensure that someone else’s daughter or son might have the best chance possible at surviving blood cancer.
To register and learn more about Light The Night, go to lightthenight.ca