Chapter 4 - Treatment

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At the end of the day there is a frightfully clear dividing line. There is a clear case of Black and White with childhood cancer. Your child lives or your child dies. For many parents the time spent living between these two extremes is an unimaginable torment. These statements are possibly only made by a bereaved parent. If your child has not died, you just sit, wait and hope. For years and years. In many of these cases there is no Black. You cannot afford to contemplate the Black, there is only the White. My child will survive

When Max was diagnosed with a tumour I desperately wanted to know if his first and second cancer were linked. This knowledge would have made no material difference but I wanted some fact to grasp. The annual chances of a child being diagnosed with Acute Myeloid Leukaemia were about six in a million. The annual chances of a child being diagnosed with Rhabdomyosarcoma are about four in a million. Over a four year period the chances of getting both illnesses independently were of the order of billions to one. These are incomprehensible numbers and so I assumed that the cancers were linked. I started to do the lottery every week. The chances of winning are about thirteen million to one. We'd visited these sort of numbers. It can happen. It might be you.

A parent's relationship with the consultant requires a lot of faith, trust and understanding from both sides. We had that relationship with our consultants. They, like the nurses, became close friends.

The consultant has to judge the level at which to make an explanation. How much do you understand, how much you will actually hear? Are you are capable of absorbing both emotionally and mentally the information which he or she has at their disposal? I have a logical mind and asked a lot of searing questions about the nature and progress of Max’s illness. I made it clear that I wanted the truth, however bad it might be. Sara also felt that this was paramount to our understanding of Max's cancer and our ability to come to terms with our situation. We wanted to be told that if they had an answer to our questions then they would give it, and if they did not know then we would also wanted to know that too. And that was what happened.

We had three consultants. This is unusual but occurred because the consultancies were split between the leukaemias and the tumours. Max had had both. The third consultant was the Professor in charge of the unit and who was involved in both of Max’s treatments.

Max's leukaemia consultant saw us just after we had been given the official diagnosis for Max's second cancer. He mentioned nothing about the new cancer which surprised me given his caring attitude during the interminable waiting. Later I asked him why he had said nothing. He apologised and said that he just could not face talking about Max’s diagnosis during that consultation. This is the human side. Here was someone admitting that despite the suffering which he witnessed each and every day it still had an impact.

There is another situation like this which stands out vividly in my memory.

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