“Nathanaël has always been a very sociable child. Four years ago, in May, his behavior began to change : he stuck to me, he sometimes moved away, he was suddenly afraid of the dinosaurs he adored… My family also noticed this metamorphosis. We had consulted a doctor because Nathanael had an episode of fever and very swollen neck glands. We had been reassured but I felt that something was wrong. My sister-in-law, a nurse, advised us to consult the emergency room. I had to lie about my son’s condition to get the doctors to agree to see him again (we had already consulted a few days before). Honestly, I followed my instincts, and I did well because after the blood test, I felt a change of atmosphere in the room. Besides, I started to cry without being able to explain why. The doctor came to tell us that he was keeping Nathanael for a lumbar puncture scheduled for the next day and there, it made “tilt”: I remembered the father of a friend who was doing this examination as part of his leukaemia. At that moment, I understood that we were going to announce something.”
Childhood leukemia: “Doctors never used the word cancer”
“The doctors did not need to perform a lumbar puncture because, after a second blood test, the tumor marker level was high: the word leukemia was spoken. At the time, I felt angry because I remembered having been forced to lie so that Nathanael could be taken care of and I said to myself if I hadn’t insisted where would it be? ? I didn’t really have time to think about it because he had a string of medical appointments and we were immediately told that we were in the hospital for several weeks. He was placed in a bubble chamber because he was going to lose all his immune defenses and he had to be protected from all possible germs. After the first chemotherapies, he had tumor lysis syndrome, the treatments destroyed his kidneys and he was transferred to intensive care for several days. Besides that, my son was full of life, I even had to tell him to keep the noise down for fear that he would disturb the other patients. A real little monkey that climbed everywhere! When I looked at him, I didn’t realize he was seriously ill. I had the feeling of being there without being there and that at any moment I was going to wake up from this nightmare.
Acute leukemia: “Nathanaël pulls us up”
“Nathanael demonstrated incredible strength and extraordinary courage. He pulled us up whenever we tended to show signs of weakness. He managed his pain, but also his fears. Before his cord blood transplant, he had 6 radiation therapy sessions a day. Normally, these sessions are performed under general anesthesia, there was no anesthesia for Nathanaël and he remained motionless throughout the sessions. The medical teams told us that Nathanael was incredible. When he came out of his first session he said to me: “I didn’t want you to cry mum so I stayed calm and I didn’t move”, I cried about it… The strength of children is simply indescribable.”
Pediatric cancer: “The Princess Margot association has helped us a lot”
“The disease and the fight last a long time and the people around us do not realize what it is. We find ourselves alone with the disease because it scares people to see a child without hair… The Princess Margot association has helped and supported us a lot, as well as my mother and my older brother who have been very present. Do not hesitate to ask for help, it is not a weakness. A kitty was set up to help us find accommodation near the hospital because at the time of the transplant we couldn’t sleep with him and we were far from the hospital. Fortunately, some people have been able to see our needs because we parents are so in our bubble that we can’t get our heads out of the water.. Today, Nathanaël is in remission and the hospital didn’t lie to us, it’s a long fight. Its reconstruction begins with the help of a sophrologist and hypnotherapy sessions offered by the Princess Margot association. My son wants to take full advantage and we are doing everything to get it back on its feet.”