“I often felt very lonely”
Interview with Raphaël Salomon
At the age of 13, Raphaël Salomon was diagnosed with acute myeloid leukaemia*. The intensive treatment caused life-threatening complications. The teenager frequently had to be hospitalised for long periods of time or isolated at home for months. Most of the support that had been expected from school failed to materialise, which is why he and his family tried to find solutions on their own. Raphaël is now 22 and is doing his Matura exams (the Swiss equivalent of ‘A’ levels) in evening classes. The past eight years have certainly left their mark on Raphaël. In collaboration with a school, he has set up a project to help children who cannot physically attend school due to illness.
Mr Salomon, when you were 13, you were diagnosed with leukaemia. Due to complications, you could not go to school for years. What exactly happened?
When I was diagnosed, I had just started secondary education. From one day to the next, I had to leave school and my friends and was hospitalised. I spent the first two months in the isolation ward, where no one was allowed to visit me except my family. Then, a few months later, I had a stem cell transplant. Unfortunately, this procedure resulted in severe complications and triggered a chronic disease called graft-versus-host disease**, or GVHD for short. I was so ill that I couldn’t go to school at all for a period of almost two and a half years. On the one hand because of the pain and the countless treatments, but also, on the other, because my immune system had to be completely shut down in order to get the disease under control. That was a very difficult time for me. Outside, life went on, my schoolmates changed classes, moved on and I was left behind in hospital, isolated from the outside world and with no contact to my old friends.
What happened re school while you were in hospital?
There were lessons in the children’s hospital, but I was often too unwell or too tired and exhausted to go because of the therapies. And unfortunately I received no support from the public school I had attended before being diagnosed as having cancer. The situation was already very difficult in terms of my health, and as far as school was concerned I kept falling through the gaps over that period. My “old” school was unable to help me and the cantonal authorities did not feel obliged to find a solution for me because my parents had enrolled me in an online school so that I didn’t completely lose touch. I did manage to catch up on some of the school material, but I really missed my classmates and the feeling of being part of a class community. When I finally got better after two and a half years of therapy and was out of hospital, I transferred to a state school and went into the sixth form. Although the doctors had assessed my health as stable, I had a relapse after six months. And the whole process started all over again.
And what happened in terms of school after your relapse?
The aggressive drugs I had to take to treat the GVHD severely lowered my immune defence. And that meant it was too dangerous to go to school because of the high risk of infection. I was back to staying at home in isolation and was excluded from everyday school life. On top of that, my appearance changed a lot because of the high doses of cortisone. I found these two things together extremely stressful, but I really wanted to finish secondary school. I was already very stressed because my health was not very good and then I had the added stress of exams. The only support I received from my school was a substitute teacher who was given four hours a week to help me. Four hours to cover every subject. Four hours to have me do the obligatory tests. Four hours to help me prepare for the final exams. That was not nearly enough and I had to do most of the work myself. Ultimately, I made it, but the experience pushed me to my limits, both physically and mentally, to such an extent that I ended up with burnout.
You had to spent most of your teenage years in hospital. How much contact did you have with your classmates and how did you feel through that time?
Apart from my family and the people in the hospital, I had no other social contacts for two and a half years. Back then, I spent a lot of time wanting to have my old life back, to be able to go to school and see my old friends. But when I was in hospital, I lost all contact to school and my classmates. I think they were afraid of the illness and didn't know how to deal with it. Maybe nobody explained it to them. Many people find things like cancer and death extremely frightening. In my case, it would have been helpful if the teachers in my class had talked about it to take away this fear. During that time I often felt very lonely. I got the impression that my classmates had already written me off, that I no longer existed for them. That definitely would not have happened if they had known more about the illness and I could have continued to participate in the lessons, even if only virtually. Losing my friends and no longer having a connection to my life before the disease was very difficult for me emotionally. So instead I tried to be a “good” patient and not cause anyone unnecessary trouble or worry. That was not easy for me because actually at that age you are busy developing your own identity, breaking away from your parents and becoming independent. None of that was possible for me at the time.
After school, you wanted to do a commercial apprenticeship, but were not taken on because of your medical history. What did you do then?
Yes, the food company I had an interview with said that my health was too much of a risk. But, since I am very stubborn and don't give up easily, I decided to take the Matura (note from the editor: ‘A’ level equivalents) at school. However, due to the severe side effects of the GVHD treatment, the doctors felt I was too weak to participate in in-classroom teaching. But this time I was lucky because the school and my classmates reacted quite differently. For the first time, everything was done so I could attend classes despite my illness. The headteacher had the idea of using a school robot called NAO. With the help of this robot, the lessons were broadcast live for the first six months, which helped me to keep in touch with what was going on at school and not miss too much of what they were doing in class. However, there were some technical and logistical difficulties, but the main problem was that some teachers did not want to be filmed. As there is no school law that makes remote learning compulsory in the case of prolonged illness, no one could force them to do so. As a result, I was often left to sort things out for myself again and I had to make a great effort to catch up on the material I had missed. The positive thing about it, though, was the way my classmates dealt with the situation. I have the school nurses to thank for the fact that I got so much understanding and support. They were the ones who talked about my health problems in class without stigmatising me as having cancer. That really helped me.
Where do you stand today and how do you assess the situation in retrospect?
At the Gymnasium, the grammar school, I had the feeling for the very first time that I was not completely on my own the way I had been at previous schools. This is where I found out that there was someone there who could make a difference to help me and that they actually did that. In the end, however, I had to give up because I had another relapse. Over time, it simply became too difficult to follow the lessons from home and to cope with the large amounts of school work on my own. For a year now, I have been going to evening classes. I feel good. I am slowly reducing my medication and it feels good to have a “normal” body again. So the next thing I would like to do is finish my school education and then study at the hotel management school in Lausanne. Looking back, I have to say that although the disease forced me to take a lot of detours, and although I was four years behind friends of the same age at school, I never stopped wanting to pursue my dreams. In this respect, I guess this life experience has also made me strong and I would like to help other children and adolescents in a similar situation.
Your story gave you the idea of founding an organisation. What is the aim of “Rafi goes to school”?
In the past, I often felt that my illness was a problem for schools and teachers. That I had to bear the consequences of a system that is not prepared for someone who is different. “Rafi goes to school” is a project I set up to help those children who, for health reasons, cannot benefit from in-classroom teaching. First, goals should be defined with the school the child attends and then put into practice with the help of the teachers. To counteract the feeling of loneliness and exclusion the children feel, lessons should take place in their parents’ home. If that is not possible for health reasons, remote learning is another possibility. The aim is to match the lessons with the syllabus the particular child or adolescent has followed so far – with the aim of reintegrating the child into school once they have recovered from the illness. This project is something close to my heart. Because I don’t want other children to have to experience what I experienced. I want to show them that there are people out there who will listen to them when they need help and that they can achieve their professional dreams or any other dreams for that matter.
* Acute myeloid leukaemia (AML) is a rare type of blood cancer in children and adolescents. The disease originates in the bone marrow, where normal blood formation is disturbed by an uncontrolled multiplication of immature blood cells. Without therapy, AML leads to serious diseases and organ dysfunction with a fatal outcome.
** For many patients with acute leukaemia, the transplantation of blood stem cells from healthy donors is the last chance of treatment. However, in every second case, the immune cells used attack the recipient’s tissue a few months after the transplant and damage it, sometimes in a life-threatening way. Experts call this chronic graft-versus-host-disease (GVHD