Captain Leo | The Press

Léo sits in the driveway of the family home, places the ball on the paddle of his hockey stick and shoots tirelessly for hours towards the net. Then he takes his tennis racket and hits balls against the school wall. He never stops.

In the summer of 2023, Leo is 10 years old. After a vacation in California with his parents and his sister Arielle, 13, where we “moved around a lot,” say Julie Rabouin and Stéphane Tremblay, Léo resumes his routine by playing deck hockey. The tournaments follow one another, three or four games per day, despite the heat. He is preparing for the start of the school year and for his next hockey season. He is happy and thrives on sport.

At the end of September, Léo notices that he has a small bump on his forearm. He tells his parents about it. Even if it seems benign, Julie and Stéphane decide to consult a doctor. They have a good reason. In 2009, they lost their first child, Norah, to a devastating cancer at the age of 23 months. A rhabdoid tumor with metastases, an extremely rare cancer, was attacking Norah’s kidneys. Julie and Stéphane loved, cared for and made Norah laugh until the end.

Léo and Arielle never knew their sister, but know that she died of cancer. Norah remained present within the family. Many photo albums, a special thought on his birthday and the reminder of many happy memories.

In addition to the bump on his arm, Leo also feels pain in one leg. But he continues to play sports and walks to school every day. Examinations and analyzes do not allow a clear diagnosis to be made. The pain is more and more intense, he sleeps poorly and has bad days.

Friday 1^is December, a nurse from the Montreal Children’s Hospital calls Julie to tell her that Léo has an appointment with the D^r Anthony Bozzo the following Tuesday and that he will be able to explain the results of the exams to him. Julie does a quick search and discovers that the D^r Bozzo is an orthopedic surgeon specializing in cancer. It’s the shock. She calls back immediately to say that Leo’s leg is also very sore and that he can no longer sleep at night. The nurse tells him that the D^r David Mitchell, head of the hemato-oncology department, will also be present.

Julie and Stéphane look at each other and decide not to say anything to Léo or his sister Arielle. Even though he is in pain, Léo insists on participating in the hockey tournament planned for the weekend. He manages to play, misses a period, but finishes the match. Stéphane is devastated: “I told one of the coaches that we had an appointment with oncology. I burst into tears and stood in a corner to cry. I had a bad feeling. We had already experienced it. We didn’t eat, we didn’t sleep until Tuesday. »

The meeting will last a few hours. The D^r Mitchell learns that in addition to the bump, Leo is no longer able to support his right leg. He carries out an examination. Stéphane sees very well that the doctors are worried. “When they looked into each other’s eyes, I had a very strong image, I understood that they were saying “tell me that’s not it”. » New x-ray, new reading of the images.

The D^r Mitchell opens the door to his office and invites Julie, Stéphane and Léo to sit down. He explains to them that arm and pelvis pain are directly linked. It’s cancer.

“I was completely in a fog, in a state of shock,” recalls Stéphane. The D^r Mitchell turns to Leo: “Do you understand what’s happening? You know, Leo, we see that you have cancer. You can ask me all the questions you want. » If the approach may seem a little too direct, it helps establish a bond of trust between Léo and the D^r Mitchell.

“We don’t lie to children. We don’t hide the truth. You have to know how to speak to them gently so that they understand what is happening to them and tell them that we are going to form a team,” says the D^r Mitchell.

Back at home, Léo rushes to his tablet. He watches on YouTube the ceremony at the Bell Center where Saku Koivu jumps on the ice for the first time after beating cancer, hypnotized by the nine-minute ovation the Canadiens captain receives. For Léo, cancer is the death of his sister, but it is also the victories of his grandmother, now in remission, and of Koivu.

Julie and Stéphane are faced with a second extremely rare pediatric cancer, Ewing’s sarcoma, which first attacks the bones and the soft tissues around the bones.

“I wanted to know his life expectancy. How much time does he have left? The doctors did not want to comment. You had to live in the present moment and not try to project yourself. But it’s difficult. We think about it all the time,” adds Stéphane Tremblay.

At first, Leo is afraid. He doesn’t want to go to the hospital. He hates needles and tells his parents that nurses are terrorists who will torture him. Julie shows him photos of a smiling Norah having fun at the hospital. We need to get Leo to laugh and see the hospital as a playroom.

In addition to the D^r Mitchell, the pediatric hemato-oncologist Stéphanie Mourad, the radiation oncologist Carol Oliveira and the pediatrician Naomi Goloff will deploy around Léo with the complicity of the pivot nurse Johanne Soucy and the childhood advisor Afifah Chaudry.

On one front, cycles of chemotherapy and 31 radiotherapy treatments follow one another. On the other, everything is done so that Léo experiences magical moments. An alliance of science and the heart.

Unforgettable meeting with Cole Caufield, his idol, and Nick Suzuki at the Canadiens’ training center thanks to Félix Séguin of TVA Sports and the Canadiens Children’s Foundation. Even the National Hockey League sent him an autographed jersey from the All-Star game.

During his treatments, Léo proudly wears the colors of the Manchester City soccer club to friendly provoke the nurse, an Arsenal fan. The radiotherapy team ensures that the same technologists are present around him while playing his favorite song, That’s life, by Khaled. Small details that show all the humanity and kindness of the staff.

Chemotherapy proved to be a failure. The cancer is progressing. Doctors are turning to palliative radiotherapy. That’s the countdown, Julie said. “You look at the pain that appears everywhere, every day. Leo thought he would receive new treatments in order to heal. We knew it wasn’t that, but we preferred not to tell him… With Stéphane, we had a good discussion with the doctors… Tell us the real things… If I have four weeks left with my son, I’m going to do everything I can to give him incredible experiences for four weeks. »

Léo has three dreams: seeing a World Cup soccer match in 2026, attending a Los Angeles Kings match to meet Phillip Danault or a game of the Edmonton Oilers and his idol Connor McDavid. It doesn’t work. Stéphane then thinks about a trip to Toronto to the Hockey Hall of Fame. We have to act quickly.

The family takes the plane to make Léo live out his passion for hockey and sports in the last moments of his life. Between the visit to the Hall of Fame, a memorable evening at a Blue Jays game, shopping at souvenir shops and the CN Tower, Julie and Stéphane are in direct contact with the medical team in Montreal who ensure that the pain is under control.

Back home, Léo is more and more tired. Cancer is merciless. It’s time to make big decisions. Leo wants to stay at home as long as possible. No question of going to a palliative care home. You have to follow the captain and make a few departures from protocol.

Once again, all measures are taken in Leo’s interests. Medical supervision, Teams meetings every four hours to adjust medication, home visits. “You take Leo back to the hospital when you feel like you’re no longer parents and you’re starting to become nurses,” says the D.^re Goloff to the parents.

After a few days, the D^re Mourad tells them that they have “done their best”. “I think it’s time to take Leo back to the hospital.” » His room is ready. There are images of the Canadian, stars and Léo’s name prominently displayed. During the last days, Léo is under sedation. Everyone, nurse, pharmacist, nutritionist, attendants, came to say a last goodbye to Léo and share anecdotes and moments experienced with him.

Julie recounts the visit of the D^r Mitchell: “Leo was sleeping soundly. But when he heard her voice, he opened his eyes a little. His doctor, who had been following him since the beginning, was near him. »

Léo passed away slowly on the night of August 17.

Why did cancer strike twice, different and rare cancers? Genetic experts are searching for the answer.

“Even if I was angry, trying to figure out why both of them got cancer, what difference is that going to make? Julie asks. Léo had lots of passions and we will try to live through his passions. We are two healthy parents and we are going to enjoy life with Arielle. »

There is something moving in seeing all these humans unite around Leo. An exceptional, sensitive and dedicated medical team. And wonderful parents who navigated between pain and great moments of happiness, carried by a courageous and inspiring child.