Childhood Cancer—a Mother's Story

Abstract

In March 1994, when our son Stefan was 13 years of age, he was diagnosed with acute lymphoblastic leukaemia (ALL). He was treated with chemotherapy according to the BFM-92 protocol in the Children’s University Hospital in Bonn, Germany, followed by brain irradiation and maintenance therapy. He recovered slowly from the side-effects of the disease and its treatment and life seemed to be ‘‘normal’’ again, when in November 1997, we were shocked again by the news that our son Martin, then aged 18, was diagnosed with osteosarcoma of the pelvis. He too received chemotherapy, was operated upon and received further courses of chemotherapy according to the COSS96 Protocol. One half of his pelvis and one hip joint had to be removed. As a result, he is now handicapped, walks with a severe limp, cannot run or cycle and needs special cushions for sitting. However, he has learned to cope with the deficiencies relatively well. Only a year later, in December 1998, Stefan, then 18 years old, had a relapse of his ALL, which was treated with more intensive relapse therapy and more brain irradiation and maintenance therapy. Today, both our sons are well integrated in their social environment and are presently attending university: one is at medical school, while the other is studying computer science. You can imagine that we all hope that cancer is now a part of our past. It is not very common that two children in a family—we also have a daughter who is now 20 years old—are affected by this dreadful disease and our experience should not panic other parents. We would like to illustrate herein our personal experiences and how we learnt to cope. At the end of Stefan’s first treatment episode, I started to get involved in the local parent initiative for children with cancer at the University Hospital in Bonn, as well as in the national organisation of all parent initiatives in Germany, which shares its office with the local group. Today, I coordinate a school project designed and sponsored by the local parent initiative that links the patients with their home school via a specific ‘Intranet’. School-aged patients, when they come to the ward, are equipped with a laptop with Internet access which enables them to participate in their individual classroom teaching. We also provide the server and a camera in the classrooms of the home school, instruct the teachers and the other classmates who are generally very enthusiastic about this way of being able to communicate with the student in hospital. Thus, the patients are closely connected to their classmates and teachers, keep up with their curriculum and are informed about all school events. The diagnosis, childhood cancer, was a great shock for us, especially as it hit our family three times. Retrospectively, we can say we were lucky to live in a town with a qualified paediatric cancer Unit, where we got the proper treatment and excellent care. We were thoroughly informed about all aspects of the disease and its treatment. We got answers to almost all our questions—of course not the one ‘‘why us?’’, which is still on our minds, even though we, the parents, underwent genetic counselling. During the treatment period, doctors and nurses always found the time to talk to us, explained each new step in the treatment and all of the medications involved. Most of the time, we were prepared for all of the expected side-effects and the reasons why these or those measures had to be taken. Our sons were also well informed, which certainly increased their compliance. Both had a port-a-cath implanted which eased the application of the necessary infusions. They always knew the doses of each medication and were able to control the infusion pumps themselves which gave them independence and a sense of responsibility. When I met with parents from other hospitals, I was amazed how much I knew about the diseases of my sons compared with these other parents. Of course, some medical background—my husband is a general practitioner—helped. But frankly, most of the knowledge I acquired about the disease I got on the ward and from my work with the ‘parent initiative’. We felt that this knowledge und understanding helped us in any decision-making and in the support of our sons as patients. We also realised that honest information was very important for our sons—and any other patient—to be