«I suddenly had the feeling I had two sick children»

Interview with Andrea Meyer*, mother of two daughters

Andrea Meyer* has two daughters, Naomi and Isabelle, who are now 12 and 9. Just before Isabelle’s seventh birthday, the doctors at the children's hospital diagnosed her with a malignant soft tissue tumour. The intensive therapy lasted a year, during which time the girl received chemotherapy and radiotherapy and had to undergo surgery. When Isabelle was diagnosed with cancer, her elder sister Naomi had just had her tenth birthday. The cancer was treated successfully and, two years later, Isabelle now only has to go to hospital for regular check-ups.

 

Ms Meyer, what did the disease mean for your everyday family life?
Although it was obvious that we were facing a very intense time, we weren’t prepared for our everyday life to change so drastically. We were very worried about our younger daughter because we didn’t know whether she would come through the operation well, how she would cope with chemotherapy or whether she would recover at all. It was a time full of questions, uncertainties and worries, not just for us as parents, but also for Isabelle’s older sister Naomi. Practically overnight, our entire family life revolved around Isabelle’s health and everything became focused on that. And we had to learn to react very flexibly, for example when her blood count was too bad for a treatment that had been planned. The doctors had told us that it was very important to keep things as normal as possible, but we were torn between these extremes. Unlike many other parents, my husband and I were very lucky to have understanding employers, so we were able to work a lot from home or from the hospital. And we had a lot of support from my mother, too. Nevertheless, it was a constant balancing act between trying to keep everyday life as “normal” as possible for both children and the challenges posed by the illness.

How did Naomi react to her younger sister’s illness?
Naomi probably struggled most with the fact that I was no longer her central point of reference – so she was lacking my attention and support. Her sister's illness took up so much of my time that I no longer had any resources left for her – neither in terms of time nor emotionally. This in turn meant she was forced to become independent very quickly. Suddenly she had to do lots of things by herself, such as her homework for example or getting the bus to the hospital. After a while, Naomi began to withdraw socially, no longer wanting to meet her friends, preferring to stay at home or with Isabelle in hospital. Looking back, I would say that it was a very trying time for Naomi, emotionally speaking. She had difficulty getting to sleep, was often down and cut herself off from her peers. The psychologist at the children’s hospital had told us that siblings can also suffer in a situation like ours, but initially we were just happy that our elder daughter was healthy and that everything seemed to be working well.

What role did Naomi play for her sick sister?
The two girls were always very close. During the illness, their relationship became even more intense and still is today, even though they are both very different. In the hospital, Naomi was Isabelle’s central link between her life inside the hospital and the world outside. She made sure that Isabelle didn’t feel isolated, particularly as far as school was concerned. As the older sister, she had made it her business not only to play with Isabelle and cheer her up when she was feeling down, but also to take on the role of a teacher. Naomi is very good at school and she took great pleasure in teaching her little sister to read and do maths. And Isabelle benefited from this because she had just started school and, to be honest, we didn’t actually receive much support from the school. For a while we didn’t realise that these tasks were actually too much for Naomi and the whole situation was putting more and more strain on her.

What was the most difficult thing for you as parents and were there also positive moments?
The life-threatening illness of a child is in itself an immense challenge for parents. But it becomes all the more difficult when you have another child who is not doing well either. I suddenly had the feeling I had two sick children. First of all, I had to accept that my elder daughter was suffering and that I didn’t know how to help her. There was no patent remedy or treatment plan like Isabelle’s that we could simply follow. That was difficult and I could have done with more support. We tried out different things and looked for alternative solutions, partly because the counselling services in the hospital did not suit Naomi. We thought about what would do her good and how we could get help from outside. Despite all this adversity, there were also many positive moments. The illness has brought us even closer together as a family. It showed us that we can trust each other and develop strategies together in difficult situations to overcome seemingly insurmountable obstacles.

What helped Naomi most during this time?
Within the family, we always talked openly about Isabelle’s illness and even though Naomi rarely said anything about her feelings, this openness was certainly helpful for her. The fact that she could spend a lot of time with her sister in hospital was just as important. In this way, she was not only able to see exactly what was happening there, but she also received some of the attention and care that was otherwise reserved for her little sister. And as it became increasingly clear how much Naomi was suffering, we found a guidance counsellor who did painting therapy with her, and that did her a lot of good. Naomi loves animals and in the period where she was most down, we went for a lot of walks with the neighbours’ dog. The contact with this Labrador Retriever eventually also led to a turning point and helped her to regain her vitality and light-heartedness. I will never forget the moment when Naomi was rolling around in the grass with the dog and, for the first time in a long time, I thought to myself “now she is happy and back to her old self again!”

 

* All names were changed at the request of the family.