“I don’t care about my leg. Take it. I just want to live.” That was what an indomitable 10-year-old Samuel had to say when the doctors at Sainte-Justine told him they would have to amputate part of his left leg to remove an aggressive osteosarcoma tumour in his tibia.
It all started in the summer of 2022: Samuel had developed a slight limp, which his parents chalked up to nothing more than a growth spurt. But when the pain got worse, they decided to take him into a nearby medical clinic to be evaluated. After all, hockey season was just around the corner, and Samuel, the consummate athlete, had to be ready.
An X-ray of his shinbone showed a lytic lesion — an area of bone damage that is usually the result of an infection or cancer. Samuel and his family were immediately directed to the emergency room at Sainte-Justine for further testing.
The diagnosis was as quick as it was unsettling: Samuel had an osteosarcoma, an aggressive form of bone cancer that most commonly affects children and young adults between the ages of 10 and 20. It’s the same cancer that claimed Terry Fox’s life in 1981.
“Sam looked me straight in the eyes and said, ‘Mom, promise me I’m not going to die.'”
Stéphanie had no idea how to answer her son’s heartbreaking plea. All she could promise was that she and Samuel’s dad would be there by his side to help him weather the storm. And they wouldn’t be alone: they would have the incomparable expertise of the teams at Sainte-Justine to rely on, and the knowledge that they would do everything in their power to get him better.
A rare surgical procedure
Samuel was exactly where he needed to be. Sainte-Justine is a North American leader in the fight against cancer. It is home to a supraregional oncology centre where over 65% of pediatric tumours in Quebec are diagnosed and treated.
Not so long ago, a cancer diagnosis in childhood was akin to a death sentence. But scientific advances, made possible by donors like you, have dramatically improved the outlook for young cancer patients. Treatment is now successful in as many as four out of five cases.
However, despite ongoing research, there are still some types of cancer — osteosarcoma among them — that remain difficult to treat. Little has changed since 1977, when Terry Fox was first diagnosed with the disease: patients undergo multiple weeks of chemotherapy, followed by surgical removal of the affected bone. Your support remains vital in keeping hope alive and funding continued research into this rare bone tumour.
Fortunately, Samuel’s osteosarcoma was localized and hadn’t spread to other parts of the body, making for a better overall prognosis. His chances of long-term survival were 65% to 70%.
He started chemotherapy in August 2022. He was supposed to have surgery 15 weeks later, but the delivery of the metal prosthesis that would replace his tibia had been delayed, due to pandemic-related supply chain issues plaguing the U.K.-based manufacturer. Time was of the essence: unless they removed whatever was left of Samuel’s tumour immediately, there was a real risk of it spreading.
Faced with this deadlock, Samuel’s doctors reminded the family that there was an alternative: rotationplasty. The operation would involve removing the section of the leg where the tumour is located (in this case, the upper tibia and knee), rotating the remaining limb 180 degrees, so the foot faced backward, and reattaching it to the thigh. The rotated ankle joint would later function as a new knee joint, to which a prosthesis would be fitted.
This isn’t the path that most families choose. The unusual appearance of the amputated and rotated limb can be psychologically difficult for a young patient to accept. But the benefits of the procedure are compelling. It uses a natural joint in the body, which is more durable and works more smoothly than a mechanical joint. Once the patient has healed, there are no restrictions in terms of sports and other activities. The required prosthesis is also more lightweight, and the need for subsequent surgery is eliminated.
“When he first got to Sainte-Justine, Samuel’s wishes were clear: he didn’t want to lose his leg,” said Stéphanie. “But by the time we got to that point, he changed his mind. He said, ‘OK, let’s do it. I want to live.’”
Getting to the finish line
The operation took place on January 5, 2023. Everything went to plan. When he came around, Samuel was unsurprisingly overwhelmed. “But a week and a half in, he had already begun getting used to it,” said his mother. “He would play around with his leg and even use it to make shadow puppets on the wall!”
The pathology reports showed a 97% necrosis rate for the tumour removed from his leg, confirming that Samuel was responding well to treatment. He nevertheless needed several more weeks of chemotherapy to make sure his body was rid of every last cancer cell.
Then on May 18, 2023, after 29 weeks of chemo, the day Sam had been waiting for finally arrived — the day he was able to ring the remission bell at Sainte-Justine. He was cheered on by his parents and the dedicated healthcare professionals who had been there for him throughout the entire process.
“From day one, we clung to the hope of getting to ring that remission bell. It’s like when you’re running a race and the only thing you can think of is crossing the finish line. It was a very, very emotional experience. Everyone was in tears.”
The next months will be no less challenging for Samuel, who will have to “reprogram” his brain to move his new joint and rebuild his muscle strength. He will also have to learn how to walk with his new prosthesis, with the help of the teams at the Marie Enfant Rehabilitation Centre (CRME), which your generosity also goes a long way in supporting.
Through all the moments of uncertainty, Samuel knows he has the whole community at Sainte-Justine to lean on. They give him the courage to go on when times got tough and celebrate every victory, big and small, with him. Thank you so much for being a part of this community and for supporting Sam on this journey.
© Geneviève Charbonneau
RBC Race for the Kids
Samuel now wants to give hope to other children as they wage their own health battles. That’s why he will be an ambassador for the RBC Race for the Kids to raise money for the CHU Sainte-Justine Foundation. Join him on September 30 for this fun run for all ages and help him meet the event fundraising goal.
Come run or walk the 1 km or 5 km route and enjoy a wide range of the family-friendly activities while you’re there. Samuel would also like you to go the extra mile and reach out to the people you know to sponsor you. The goal is to raise $500,000 to build a healthier future for children and families across Quebec.
Together, let’s lace up for Sainte-Justine!