The words of this testimony were collected by HuffPost Quebec and transcribed in the first person.
Raphaël, he’s my youngest, he’s my baby. At the age of seven and a half months, he was diagnosed with leukemia.
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Courtesy
To get by, he needed a bone marrow transplant. Fortunately, he was 100% compatible with his older brother Eliot – there was a one in four chance they would be compatible – so he was able to have the transplant. On day 100, Raphael had a relapse of his leukemia. His brother was able to save him a second time thanks to the transplant. For the past few years, my now nine year old boy has been in remission from his leukemia.
In March 2019, during an annual follow-up, doctors detected that there was something wrong with his heart. A year later, last March, we learned that Raphael would probably need a heart transplant. Diagnosis: cardiomyopathy. Her heart becomes stiff and puts pressure on her lungs.
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Other tests have just been carried out, and it is confirmed. There are no other options, my nine year old son needs a new heart. He had to undergo other tests to find out if a transplant is indeed possible for him, but it looks like it will be. But we don’t know how long he’ll be on the waiting list for. If the pressure on his lungs rises too much, the transplant becomes impossible. We must therefore be able to find a compatible heart for him quickly.
A child who needs a heart transplant is very rare. It was chemotherapy during his leukemia that would have damaged his heart. At the time, this treatment was to save him, we could not know what would happen in the longer term. We are going to return to the unknown. We know we’ll have to go back to the hospital, but we don’t know for how long.
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It’s like we’ve been lit a lot of fires, but we don’t have firefighters to put them out.
We recently had an appointment with a doctor to get more details about the transplant. We were told that generally, there is a social worker at this meeting. On the other hand, that week, she was on vacation… Finally, we were in the office with two doctors and the pivot nurse. It was a lot of information and we would go home with all that, without having any support.
It’s like we’ve been lit a lot of fires, but we don’t have firefighters to put them out. I can’t put out my husband’s fire, he can’t put out mine. We both have as much pain. They sent us home with this big fire burning… It’s a lot to take at the same time.
When Raphaël was diagnosed with leukemia when he was a baby, we were naive and we trusted the treatments. When he relapsed, it was worse than the initial announcement, because we knew what to expect. His longest hospital stay lasted nine months. We lived in the hospital. It was our daily life to be surrounded by children who have cancer … So let’s say that from the moment we returned home after that, we enjoyed life 100%. It was fine, we were fine. I don’t know why it’s still falling on us.
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Courtesy
After cancer, life is normal; my child had no visible sequelae. But I know that after a heart transplant, he will no longer have a life like the others. He will be immunosuppressed and will live in special conditions for the rest of his life. And unlike the days when he had leukemia, he’s aware of what’s happening to him.
Raphael was supposed to enter fourth grade, but he can’t go to school right now. Of my two children, he was the most eager to go back to school. His brother Eliot will have to be even more careful than the others at school not to catch the COVID-19. I will not work and I will stay at home with Raphael. A friend kindly put together a Fund raising to help us in the current context.
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I don’t want him to be in the hospital for long. It is not a life for my child who learned to walk there.
It’s scary. It’s just the unknown, we have no idea where we are going. I have no idea what our next few months will be. Will the wait be at home or at the hospital? I don’t want him to be in the hospital for long. It is not a life for my child who learned to walk there.
Raphael is afraid. What is most difficult for him is that at the moment he is not diminished. He is not bedridden, not in bad shape. So he wants to play and see his friends. His only symptom, so far, is that he’s running out of steam faster. But he looks “normal”, he’s doing fine now.
Since Raphael will be immunosuppressed, he must already prepare for it. It means getting rid of our reptiles at home. He will no longer be able to play in the wood or in the leaves because of the mushrooms, he can no longer eat sushi, tartare, his eggs must be well cooked, he can no longer eat raw cheese, raw milk, etc. He’s also taking an anticoagulant, so he has to be careful on a daily basis, because if he bleeds, it’s going to be hard to stop. And even with a new heart, he will have to take medicine for the rest of his life. His life and ours are changing.
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Courtesy
With everything we’ve been through, we are a very close family. Raphaël is, among other things, very close to his dad. It is often he who will comfort him, for example when he takes blood tests. And his big brother Eliot is very sensitive. It’s now that the two brothers are cuddling!
Everything Raphael went through made him resilient. We often congratulate him. He’s been through things that we will probably never experience in our lives. He’s so resolute, he’s a champion.
I have always said that my child is my hero.
The Perspectives section offers personal texts that reflect the opinion of their authors and not necessarily that of HuffPost Québec.
Interview by Florence Breton.
Raphaël’s parents update their son on their Facebook page Together for Raphaël.
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