Chapter 4 - Treatment

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The treatment effectively destroys the body's immune system so that minor ailments become lethal. A minor infection could be fatal to an immuno-suppressed child if not treated immediately. Parents become very watchful of all visitors to the Unit. Chicken pox is particularly dangerous. The worst thing about chicken pox is that it does not become apparent until well after the affected child has been infected. If the child has been visiting the Unit during the infectious period there was a general consternation amongst all the parents. Are any of the other siblings or friends infected? Have any of their children been infected?

My daughter, Paula, contracted chicken pox midway through Max's treatment. I was driving her in to see Max when she vomited violently all over the back seat of the car. I could do nothing until we reached the hospital. She was extremely upset and obviously not well. We cleaned the car and Sara took her home. Once we found out that she had chicken pox we knew she could not visit the Unit for some time. This created a lot of logistical problems as Sara and I took turns to nurse Max. Paula would come to the Unit but was not allowed to visit him. It is very difficult to explain to a four year old, who is so concerned about her brother, why she cannot see him. This lasted for about ten days. We used to wheel Max out to the reception in his wheelchair and Paula and Max would wave to each other and blow kisses through the glass window which separated them.

Within two weeks of his initial admission to the Royal Marsden Hospital, Max contracted MRSA otherwise known as ‘Golden Staff’. This is a bacteria which has become resistant to most antibiotics and can kill immuno-suppressed patients. Another thunderbolt. Did we have this copper rod reaching high into the heavens designed to attract these massive discharges of ill fortune? It felt like it. No, we were unlucky. Many families are. Out of that clear blue sky come complications you had never dreamed of, never even conceived. Golden Staff was relatively rare when Max had his leukaemia. It is not now. It has spread widely throughout hospitals world-wide.

Six months after his second diagnosis, Max complained of an itching foot. I examined him and could see a slight reddening. I was suspicious. Within twenty minutes he complained of pain and I could see inflammation. We went to the hospital at nine o clock in the evening and he was given antibiotics and we returned home. I became more concerned because I could see tendrils of infection creeping across his foot.

I decided to sleep on the floor of his room so I could monitor the situation. His sleeping was restless so I took his temperature which was very high. I took him back into the hospital at two in the morning and he was given stronger antibiotics and a blood platelet transfusion. I decided to stay awake and drink coffee and watch him. He started to hallucinate.

“Daddy, whose written this book?”

“What book, Maxie, what do you mean?”

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