Alex was only nine years old when, in fewer than 10 days, he went from playing soccer with all his friends to being confined to a wheelchair, barely hanging on to life.
It wasn’t a soccer injury. It was something much more invasive and terrifying. It was T-cell acute lymphoblastic leukemia (T-ALL).
Cheryl and Claude Tourangeau, his parents, know how an emotional roller coaster feels. They know about three and a half long years of terror, tears, hope and despair.
They also know what it’s like to come out the other side of it.
In the middle of their heart-wrenching journey was a beacon of comfort and support for all of them ‒ Ronald McDonald House for families with seriously ill children undergoing treatment at CHEO (Children’s Hospital of Eastern Ontario) in Ottawa.
Ronald McDonald House is special not only to the Tourangeau family but to Lagois Design-Build Renovate, which has been raising money for it for more than 25 years. Lagois has also created a beautiful new kitchen, pro bono, as well as an addition with a playroom and a quiet gazebo in the back garden. And each year Lagois holds a golf tournament as a Ronald McDonald House fundraiser.
Alex Tourangeau isn’t a little boy anymore, and he’s not sick anymore, either. He’s a tall, healthy guy in his third year of university, studying to become a teacher. He is so grateful for the support and care he received throughout his childhood illness that he is now a regular speaker and fundraiser for Ronald McDonald House himself. He is also an ambassador for CHEO, Camp Quality, the Senators’ Community Foundation, and others, all of whom are focused on childhood cancer support.
He tells his story to groups, answers questions, and accepts cheques on behalf of cancer societies. Several years ago he was invited to give a talk at 24 Hour [Mont] Tremblant Relay, a fundraising event for children with cancer. He was asked if he’d be the breakfast speaker. He expected maybe 50 people. He was astonished when he stood up to speak to a crowd of about 4,000. He has also spoken to groups like the Rideau Club in Ottawa.
This image shows a lengthy string of beads. Each bead represents a treatment that Alex needed.
Years ago, when Alex was about 12, Herb Lagois was looking for young cancer survivors who would speak about Ronald McDonald House at the Lagois golf fundraiser. Alex said he’d go.
“The Lagois tournament was my first speaking event,” Alex says. “It was lots of fun, and then I kept going back.”
Recently Alex and his parents visited the Lagois Design-Build-Renovate office in North Gower, Ont. to say hello to their old friends.
Alex talked about his experience with Leukemia and how strange it was to suddenly become so sick that he might die. There were endless treatments: 1152 doses of Chemo, 27 lumbar punctures, 10 sessions of cranial radiation, blood transfusions and more. (He has a long, long string of “Beads of Courage” – one bead for each treatment – that he shared at a recent golf tournament. He also gave a small beaded heart to his friends at the Lagois office.)
While he was in intensive care at the hospital, his parents were minutes away at Ronald McDonald House. From their home in Cornwall, the family was able to live there full time for a total of about 13 to 15 months. It was their lifeline.
Alex’s illness happened quickly. It began with what looked like Bell’s Palsy. One day one of his eyes suddenly wouldn’t close, and one side of his face drooped. A few days later bumps appeared on his head. The doctors weren’t that alarmed at first, although Bell’s Palsy in a child and a head full of what looked like insect bites that wouldn’t go away were not exactly commonplace.
Finally, after many appointments and tests, even including a clear CT scan, Cheryl and Claude heard the awful diagnosis. It was Leukemia. It was in his blood: 85 per cent of his body was full of cancer.
Alex went from 125 pounds to 92 pounds in 20 days. The endless treatments were unbearable for him, but also for his parents, who had to hold him down for needles when he struggled, when all he wanted was to go home. “I’m sorry, I love you, we have to do this,” his mother, Cheryl, kept saying.
At one point Alex broke out in a rash that turned out to be, shockingly, scurvy, because his vitamin A and D levels were so low. Mega doses of the vitamins brought him around.
His fever was up and down, but when it climbed really high, it wouldn’t come down. Cheryl recalls the time he had to spend 28 days in hospital with a fever of 104 to 105 F (40 C) around the clock. The culprit was a fungal infection.
His heartbeat would go out of bounds because of an extra heartbeat, a condition called Supraventricular Tachycardia (SVT) that he already had but which was exacerbated by stress and illness.
One time his heartbeat went from 120 beats per minute to 240. He was given an injection to actually stop his heart with the hope that it would restart on its own. “My doctor said there was no guarantee,” Alex remembers.
Fortunately, three days later Alex woke up.
The family became close friends with other parents and children at Ronald McDonald House. They were an extended family to each other, and parenting was often communal. They supported each other, comforted each other, understood each other as no one else could. The children played together and helped each other take their minds off what was to come the next day – perhaps life or death. And when some of the children didn’t survive, they grieved together.
“It truly was a home away from home,” Cheryl says.
“Different companies would come in and make lunch for everyone, all donated,” Claude recalls. “You didn’t have to go out and buy groceries.” Fruit and vegetables were delivered every week. There were laundry facilities with donated laundry soap. “Someone would even do your laundry for you if it’s what you needed,” he adds.
Some of the workers were cancer survivors, “so they totally got where we were coming from,” says Cheryl. It turned out that one Ronald McDonald family lived six blocks away from them in Cornwall.
“We were all on the same roller coaster ride. We made friends that will last a lifetime. When we came home permanently, it was hard, because Ronald McDonald House had become home. It’s truly an amazing place.”
Alex has three years to go at Bishop’s University in Quebec. His early education took a hit: he missed all of Grade 5, a quarter of Grade 6 and half of Grade 7; yet he graduated from high school as an Ontario Scholar. (One of his early elementary teachers, now retired, volunteered to tutor him each week during his long illness.)
He won’t be speaking at this year’s (2023) Lagois Golf Tournament because of conflicts with school, but he hopes to be back next year to play on Herb’s team.
He’s come a long, long way, from a little boy who almost didn’t make it to a strapping, energetic teacher-to-be with high marks and great dreams.
“I’m so proud of him,” says his mom.