Chapter 9 - Memories of Max

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Mentally and emotionally their lives have also been stolen from them. They are thrust into an alien environment. They have lost the stability of home life, school, and friends. They move from the comfort of home into a ward full of often very sick children. Even when they are not in hospital there is the constant disruption caused by the visits to hospital. Their gentle simple lives have been shattered by their disease. As an adult I found the process exceptionally stressful and I was just an observer. I did not have to undergo treatment. I would feel the same way or worse if I was in his position.

The anger is understandable, it is natural. As a parent it is very distressing to watch one so young with such an intense rage. In the days awaiting his second diagnosis Max often totally retreated from the outside world. He used to listen to music or play video games. We tried to talk with him but there was no response. He would not or could not hear. He would stare into space or at the television screen and refuse to acknowledge our presence. He sank back into the deep recesses as he tried to come to terms with another round of treatment. This would occur for hours at a time until eventually he emerged as his usual self again.

Sara and I found it very hard to cope with Max during this period.

We worried that our little boy was alone and struggling to deal with the impossible. We so wanted to try and help him but he completely shut us out. Because of our exclusion from his lost world we also worried that he somehow held us responsible for his condition.

In addition to the descent into lost blank trances there later followed a furious anger which would erupt without warning or provocation. He would also explode when I mentioned medicine or anything connected with his new cancer. During these episodes he screamed and shouted and became totally uncontrollable. In many ways we were glad for these outbursts. They showed a venting of the turmoil which was boiling inside. They showed a reaction which was far more healthy than the silent exclusion which had been their sole predecessor.

When Max started to talk a little about his emotions he said that he did not want people going on and on about his illness. He was often in pain and was very upset by his new intravenous line.

Ten days after his second diagnosis the explosive tantrums became too much for me. Max had trashed his room in one of the his many frenzied explosions of anger. He was hitting a beanbag in desperation in order to vent his confused and disturbed emotions.

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