Interview with Susanne Mattle Rohrer 2024/1 - Childhood cancer: Supporting the family - Campaigns - Current - Kinderkrebsschweiz

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“We were really lucky to have such a good social environment”

An interview with Susanne Mattle Rohrer, affected mother

Interview mit Susanne Mattle Rohrer

At the age of 13, Susanne Mattle’s daughter was diagnosed with leukaemia. From one day to the next, the whole life of the family of five was turned upside down. The chemotherapy Malin had to go through to treat the cancer lasted two years, but she fought and survived. The intensive period of treatment was a major challenge that the family could only overcome with a lot of outside help. They are all very grateful for this and would also like to see more understanding, flexibility and support for others affected in the same way. 

Ms Mattle Rohrer, a few years ago, the doctors diagnosed your daughter with leukaemia. What exactly happened back then?

I had to go for a check-up with my GP and I made an appointment for Malin at the same time because she had been feeling so exhausted for a while. But since she had had to have a health check just ten days earlier so she could take part in a rowing competition, I wasn’t that worried. Because of a few issues with her blood count and her slightly enlarged spleen, our GP sent us to A+E in Stans. That was where we heard the word leukaemia for the first time and we were immediately referred to casualty in the paediatric hospital in Lucerne. My husband and I were in a constant flux between being frightened and hoping that it was a mistake. But Malin was examined again and the diagnosis was confirmed. She had acute lymphatic leukaemia*. Within just a few hours, our whole life had been turned upside down; we were back at the GP’s in the afternoon and at midnight, she was all wired up on the paediatric oncology ward in hospital. We were devastated and had absolutely no idea about what to expect. It pulled the rug out from under our feet.


What happened after that? 

Malin’s chemotherapy started the morning after her diagnosis. The first few days were like something out of a bad film. One appointment followed the next, we saw one doctor after another. Again and again, there were questions to be answered and important decisions to be made because the therapy can have long-term consequences. After three weeks in which Malin also suffered complications, she was allowed home for one day. Our life was consumed by Malin’s cancer or rather the fight against her cancer. Because the standard chemotherapy wasn’t showing any signs of taking effect, Malin was classified as being in a high-risk group. This meant even more and even more aggressive chemotherapy over many months which led to life-threatening complications. But Malin had incredible stamina – she managed and came through it!


What were the greatest challenges for you as a family during the treatment? 

The chemotherapy took two years. For the first twelve months, my husband and I took turns to be with Malin around the clock in hospital or at home. We were constantly travelling backwards and forwards between home, the hospital and work. I was able to immediately reduce my hours to an absolute minimum. Otherwise I would have had to put my notice in. But at least that way, we had one income between the two of us. And the grandparents were a great help, particularly when it came to looking after Malin’s brother and sister when she was in hospital. It was a massive balancing act between Malin and her healthy, sports-crazy siblings and, as you might imagine, it was not always easy to do justice to all three. In addition, we had to learn how to deal with the fear we had about Malin. The worst thing for a parent is having to watch your own child lying there suffering, but also fighting, without being able to do anything to help. That really hurts.


What helped you most during this time? 

We were really lucky to have a good social environment that supported us in many ways. And we are utterly grateful for that. For example, my uncle let us have a car. We live in the country; Malin was often so weak that it was impossible for her to get to the hospital by public transport. This additional vehicle made things so much easier for us in our everyday life of therapy. Although my husband and I sometimes didn’t see each other for a long time, we were always in touch with each other, talked a lot on the phone. And whenever possible, we took a short walk together in the countryside, even in the rain, snow and wind. Those conversations were important. They gave us strength and the feeling that we would be able to make it together, despite the many setbacks. We have always tried to stay positive and look forward, also for Malin and her siblings. And because it was very important to us that her brother and sister did not miss out, we tried to create short but intense moments of togetherness with them. We were also very grateful for the financial support. Childhood Cancer Aid Central Switzerland paid for the countless parking tickets and many trips to the hospital. That took a lot of pressure off us because as we went on, our income got lower while the costs increased. Malin was always having to take medication that was not covered by her health insurance and the travelling costs continued to add up. For example, we travelled around 9,300 kilometres within just three months for the positive pressure therapy in Basel alone.


What was Malin’s experience of this time and how did she cope at school?

At the very beginning, Malin had promised us she would fight. And she did. She never complained about her fate, never said it wasn’t fair, even though God knows she could have been forgiven for doing so what with all the unexpected and difficult complications. The first few weeks she was in hospital, school was still an issue because she felt she was missing out on too much. But it didn’t take her long to realise she simply wasn’t strong enough to worry about school. It was a further ten months before Malin could go back to school, and then it was only for a few lessons. Because she had missed a year, she had to repeat a class. That was hard for her because she had to leave all her good friends and start in a new class with new children. And she also had to miss a lot of time at school after that. In total, she missed around 1,000 hours of school due to follow-up checks, therapies and several hospital stays because of the late effects. Nevertheless, thanks to her incredible will to persevere, she passed her Matura (note from the editor: ‘A’ level equivalents). It was definitely a big help that, in difficult times, she was able to count on the understanding of the school and the support of her classmates.


Your daughter is 20 now. How is she today? 

We are very happy that Malin is well again. But the high-dose chemotherapy that saved her life has left her with long-term physical late effects. One of these was pronounced and very painful osteonecroses on both legs. After six years with walking sticks and a wheelchair, further therapies and operations as well as constant pain, she was fitted with full knee replacements on both legs in 2023. Even though she has not been able to live completely pain-free since then, she is already walking well and enjoying life again. In the next few weeks, she will be travelling through several European countries and Sri Lanka with friends. I am really pleased for her because that is something that simply wouldn’t have been possible not so long ago. She also recently completed an internship in the emergency ward of a hospital. Despite, or perhaps because of, her background, she can definitely see herself studying some subject to do with healthcare. We’ll just wait and see how it all turns out.


From your point of view, where do you think affected parents need support most? 

That can range from practical things in everyday life to psychological support and financial help. Not everyone has an understanding employer and a family behind them like we do. When a child is so seriously ill, your world stands still, you feel like you’re in a bubble and you struggle through it together as a family and somehow just keep going. You need a lot of strength, which you simply sometimes don’t have. We would have loved there to be a kind of “helpline”, a number you could phone with any kind of problem. Whether it is for a meal when you just don’t have the time, for a transport service, when you’re not sure about the insurance, for financial or medical questions, for psychological support, for follow-up care, for counselling, for the care of siblings or any other questions, concerns and uncertainties. A well-publicised first port of call could provide all parents with a child suffering from cancer with the most uncomplicated advice possible in a wide range of areas or refer them to the right organisations and thus simply help.


How can the particular environment help an affected family?

When a child has cancer, it is an intense and difficult journey for the whole family. This makes it all the more important to have an empathetic, helpful and open environment, as well as understanding employers and schools that are willing to accommodate those affected and show a certain degree of flexibility. The children and their families have to take that journey themselves, but others can support them to the best of their ability and in this way at least take some of the pressure off them and help them bear the burdens they are carrying. Even gestures such as looking after other children in the family, bringing a meal round or maybe baking something for them can be seen as a sign of solidarity and bring a little lightness into their challenging everyday life. Accepting help when it is needed and offered. This is not always easy and could be something that has to be learnt first. From the bottom of my heart, I sincerely wish all affected families a supportive environment and, in particular, a lot of strength!



* Acute lymphatic leukaemia (ALL) is a malignant disease of the haematopoietic system. Leukaemia is one of the most common cancers in children and adolescents.

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