“The school just wasn’t interested in Oscar’s late effects”
Interview with Camilla Adby, mother of a survivor
Oscar developed liver cancer when he was just six months old. The doctors managed to save the infant’s life by surgically removing the malignant tumour and putting Oscar through several months of chemotherapy. The survivor, now eight, is considered cured, but has late effects due to the intensive treatments. His parents are fighting for more understanding and a greater willingness on the part of the authorities to ensure better integration of children like Oscar at school.
Ms Adby, seven years have passed since Oscar’s diagnosis. He is considered cured, but cancer has taken its toll. How is your son today?
First of all, we are overjoyed that Oscar is doing so well and that we now only have to go to hospital once a year for a follow-up check. He has developed into a happy and very bright child. He loves baking and cooking, is very open and interested in other people, and is a big Stephen Hawking fan. Unfortunately, the chemotherapy has damaged his hearing, which means he has to wear a hearing aid. In addition, the doctors found out before he started school that he has a condition called chemobrain*. School is therefore a challenge for him and he is tired and exhausted more often than children of the same age. Oscar and his twin sister Elin are premature babies. That’s why they had regular medical check-ups to see if they were developing the way they should for their age. Unlike Elin, however, Oscar has experienced developmental delays due to the aggressive chemotherapy. That is why he was supported in a curative education programme from an early age, which enabled him to start school at the same time as his sister.
How does the diagnosis “chemobrain” show in your son?
Oscar has trouble concentrating and is often very fidgety. If something is new to him, he first has to explore, touch and take everything apart to see how it works. That’s why it’s also very difficult for him to sit still for a whole school lesson. Outsiders could think he has ADHD, but that is definitely not the case. At the children’s hospital, they explained to us that neurocognitive impairments are a result of the chemotherapy he had as an infant. This is why the condition is also referred to as “chemobrain”.
Many survivors have difficulty in class because of their late effects. How did Oscar manage starting school?
Unfortunately, Oscar started having problems in kindergarten. Although the paediatrician, the neuropsychologist and the curative teacher felt he was ready to start kindergarten, the staff there said after just one and a half weeks that he could not stay because he simply was not ready yet. Nobody was interested in the fact that he has late effects due to his cancer, which affect his neurocognitive performance and his behaviour. What I didn’t know at the time was that Oscar would actually have had the right to remain enrolled there and receive support. But that was not clear to us and we tried to find a different solution for him in the neighbouring canton. It was a really difficult time for him because he felt like he was being punished, especially since his sister was allowed to stay in the old kindergarten. Whenever we picked Elin up, he would hide behind my back. Finally, with the help of the cantonal educational advisory service, we found another kindergarten in the neighbourhood. They had a lot of understanding for Oscar’s special situation there; he was given individual support and for the first time we found people who actually listened to us. Oscar really felt at home there and was able to develop magnificently.
How did things continue at primary school?
Things went well at the beginning. But after a while we noticed something was wrong. Oscar often had a headache or stomach ache. He didn’t talk about it much himself, but his sister and other classmates told us that some children were being very aggressive towards Oscar. Just before Christmas, his green hearing aid, that was his pride and joy, suddenly disappeared. Someone had ripped it out of his ear and thrown it away. The situation just got worse and worse, and Oscar suffered a lot. We tried to talk to the school about the bullying, but without success. Then, all of a sudden, they started telling us he couldn’t read letters and couldn’t count to 20 – all things he had already learned in kindergarten at the same time as Elin and could definitely do. Things that are documented in reports from that time. All our attempts to talk to the headteacher and explain why Oscar, as a former childhood cancer patient, was struggling and how to support him came to nothing. Instead, he was successively excluded from classes and was no longer allowed to participate in a number of the activities. It soon became clear that things couldn’t go on like that; the emotional burden on Oscar became too great. We were lucky and the cantonal educational advisory service made sure that Oscar was allowed to change to a new school at the beginning of Year 2. There they are open to his special situation and listen. He now feels very happy, is being supported individually and is finally doing well again.
What was most difficult for you during this time and what do you wish for other children and parents in a similar situation?
We felt that Oscar was being let down by the school – completely. With his “chemobrain” he simply didn’t fit into any of their pigeon holes. But our son is not disabled, he simply has late effects from his cancer. There is a corresponding diagnosis and plenty of medical reports to prove what stage of development he is at. We tried again and again to talk to the headteacher, and even his neuropsychologist was willing to come along. But the school simply wasn’t interested in Oscar’s late effects. Instead, he was increasingly ostracised from the second half-year onwards. That was a really bad time for him and it has left its mark. He kept asking me: “What’s wrong with me? Why am I so stupid?” In order for him to work through this, his doctor has advised us to seek psychological help for him. And that makes me very sad and angry. Every school is different. We saw that for ourselves. But it cannot be that it’s the luck of the draw as to whether integration at school works for a child who has special support needs due to an illness. To save other families from suffering the same fate as us, I would like to see schools address issues such as childhood cancer and actually be willing to accept children like Oscar as they are, even though they may be a little different.
* The term chemobrain is used to denote a syndrome which describes neurocognitive impairments after chemotherapy. The areas of the brain most commonly affected are those which are responsible for remembering, as well as for planning and categorising information. Thus, restrictions are found in concentration, retaining facts, short- and long-term memory, learning ability, response time, attention, multi-tasking, word-finding ability, coordination as well as verbal and visual memory.