Chapter 11 - Terminal

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"I've been through so much. All the chemo. So, so much. Why must I die after all of that? It's not right that children should die so young. It's not fair."

There was so much more that was said. We sat with him for a couple of hours. I wrote these events in my diary a couple of days later but already my mind was shutting out this nightmare conversation. It was truly horrendous. No-one deserves this. After we put Max to bed Sara and I both cried and cried.

People have questioned whether we were right in telling Max the truth throughout his illness. I would not change a thing. People do not realise what Max had been through. He had been and was going through feelings and pain that I cannot even conceive. There are three options. Hide it all, tell everything and the middle road which involves a mix of the two.

In our case we tried the first and last options to no avail in the early days of his leukaemia. There is, however, a point that is reached where both the parents and the child need the truth. Any hiding of the truth becomes an unbearable burden on both sides. Each knows that something is being held back.

At the end of the day the child you had at the start of the illness is no longer a child. There is a maturity and wisdom which is both incredible and very painful to watch. It is painful because children should not be like this. You have no choice. It is incredible because they have a wisdom and courage which you feel that you may never achieve. This is not a father's disjointed rose tinted view. It happens often and leaves those who have contact with the child in awe. I know other cancer children who have left adults feeling this way. It leaves you feeling intensely humble.

The following day Max said "If I had one wish, it would be that no child should die before they are supposed to. They should stop this happening."

Three days later I asked him how he felt. He was full of beans and laughing.

"I'm still sad Daddy."

We went to see a film with two of his friends. The last seats were taken as we reached the counter. Life smacked us in the teeth once more. We rented some videos and watched them at home. One was the 'Little Princess'. At one point the little girl feels the shape of her father's face in case she forgets it if he is killed during the war. A day later Max did the same to me.

"I don't want to forget you Daddy. I hope I can be a ghost, then I could come back and talk to you. But then I'd miss hugging you. You won't move house will you? I won't know where to find you."

As time passed Max's understanding of the reality of his situation became obvious. We discussed what would happen to his possessions after he died.

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