Chapter 9 - Memories of Max

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I watched our Community nurse spend many hours trying to remove a dressing from my very angry and sick child. I spent most of the time helping her. The dressing was extremely sticky and Max did not want anyone near the tender area which was sore from an operation. In the end we removed the dressing by force.

“Dad, I never ever want you near me again.”

I was an accomplice. I was his best friend and yet had betrayed him by helping in the one thing he dreaded. He was afraid of the pain and had a right to be afraid. It hurt a lot. If we had not removed the dressing then there was a strong possibility that the area would become infected. I had seen infection before. It is not nice and can be life threatening. Like I said, you are caught between a rock and a hard place.

There is a horrible stage during treatment where you start to see your child slipping away. I do not mean physically but mentally. You watch as they become sapped of everything which makes them children. They start to become a distant shell. The fun starts to recede to be replaced by a soulless body. It's deeply disturbing to see this metamorphosis. It is brought about by the constant mental and physical onslaught of the treatment.

There is also the disturbing sight of your child regressing once treatment starts. This was particularly noticeable during Max’s leukaemia. Max changed the tone of his voice and spoke in baby-talk like a very young child. He also started to suck his thumb again. His whole behaviour reverted back to his early years. This is a basic reaction to trauma and is very unnerving to watch. This happened only occasionally during Max’s second cancer.

What state have you reached when you start to cut deals with your seven year old son? These were the treatment deals and had to be honoured for the sake of his health. They were not simple deals. They were time limited. The deal must be struck before the next set of tablets are due. This often did not work so I had to reschedule into the night to meet Max’s daily quota of medication. Max needed the control, he needed some sort of leverage over what was being done to him. The downside? He was in a lot of pain. He was prepared to bear the pain in order to gain control. As a parent you hate every minute of it. You hate him being in pain especially when the simple resolution was to take the tablets. I also worried about the potential damage when the other medication was not taken.

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