Chapter 4 - Treatment

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Children's cancer treatment is also not always the passive process that occurs with other illnesses. With many illnesses you accept the diagnosis of the doctors and also bow to their greater knowledge and accept the treatments prescribed.

During Max's cancers we were asked to make many decisions regarding his treatment. This situation occurs because in the specialist units the treatment of children's cancer is controlled by protocols. This means that treatments are co-ordinated nationally and often throughout Europe. This type of rigorous evaluation is required because the diseases are so rare and it is difficult for one centre to judge the success of a treatment on so few occurrences of a rare cancer. The protocols are treatment regimes which are put forward based on research into the diseases. If a protocol study is being performed then parents are offered the option of taking the standard current treatment or opting for the new protocol which may provide improved treatment. These decisions are amongst the hardest I have ever taken.

During Max's leukaemia, we were given the option that he could receive a bone marrow transplant. This was an experimental procedure at that time because a transplant was only performed after a child had relapsed. Further research suggested that a bone marrow transplant as part of the standard treatment may improve the chances of a child avoiding a relapse. The only way to improve treatments is to try out these procedures. We were asked if we would participate in the study.

As a parent you want to weigh up the potential improvement with the risks of going ahead with the procedure. These are questions which cannot be answered because they are precisely the questions which are being investigated.

We opted for the study because we were worried about how we would react if Max died and that we would then feel guilty for not giving him a better chance of survival, however small. We also felt that we wanted to contribute as much as possible to anything which might help improve the chances of children who were yet to suffer from the disease.

In order to do a controlled study, some of the children in the study are given the new treatment and some remain as control cases on the existing treatment. This is done to enable a comparison between the two treatments. The selection for either type of treatment is randomised by computer so no bias can be introduced into the study. Max was selected as a control case and did not have a transplant. We were very relieved. Transplant procedures are extremely risky and we dreaded the prospect. In a strange way we felt that we had absolved ourselves by making this decision. We had given the system the chance of letting Max have experimental treatment and yet had ended up with the option we actually wanted. If he were to die then we could not blame ourselves for never taking the offer of a new treatment. Children’s cancer treatment is also not always the passive process that occurs with other illnesses. With many illnesses you accept the diagnosis of the Doctors and also bow to their greater knowledge and accept the treatments prescribed.

During Max's cancers we were asked to make many decisions regarding his treatment. This situation occurs because in the specialist units the treatment of children's cancer is controlled by protocols. This means that treatments are co-ordinated nationally and often throughout Europe. This type of rigorous evaluation is required because the diseases are so rare and it is difficult for one centre to judge the success of a treatment on so few occurrences of a rare cancer. The protocols are treatment regimes which are put forward based on research into the diseases. If a protocol study is being performed then parents are offered the option of taking the standard current treatment or opting for the new protocol which may provide improved treatment. These decisions are amongst the hardest I have ever taken.

During Max's leukaemia, we were given the option that he could receive a bone marrow transplant. This was an experimental procedure at that time because a transplant was only performed after a child had relapsed. Further research suggested that a bone marrow transplant as part of the standard treatment may improve the chances of a child avoiding a relapse. The only way to improve treatments is to try out these procedures. We were asked if we would participate in the study.

As a parent you want to weigh up the potential improvement with the risks of going ahead with the procedure. These are questions which cannot be answered because they are precisely the questions which are being investigated.

We opted for the study because we were worried of how we would react if Max died and that we would then feel guilty for not giving him a better chance of survival, however small. We also felt that we wanted to contribute as much as possible to anything which might help improve the chances of children who were yet to suffer from the disease.

In order to do a controlled study, some of the children in the study are given the new treatment and some remain as control cases on the existing treatment. This is done to enable a comparison between the two treatments. The selection for either type of treatment is randomised by computer so no bias can be introduced into the study. Max was selected as a control case and did not have a transplant. We were very relieved. Transplant procedures are extremely risky and we dreaded the prospect. In a strange way we felt that we had absolved ourselves by making this decision. We had given the system the chance of letting Max have experimental treatment and yet had ended up with the option we actually wanted. If he were to die then we could not blame ourselves for never taking the offer of a new treatment.

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