Memories of Max - A Father's Story

Chapter 5 - Freedom

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About two thirds of the way through Max’s treatment for leukaemia we had the chance to go home for a couple of days.

On the day that Max was due to be discharged we had little notice that we could go home. This was because the medical staff do not want to raise hopes falsely. Despite their reservations, our hopes were raised and dashed. This had happened before. Often we were told late in a morning that we could go home in the afternoon dependent on the result of a test or final decision by a doctor. Max was extremely susceptible to infections and many times his temperature suddenly rocketed or some infection was detected just as we were due to leave. We became very cynical and this time we were not ready to celebrate until we were in the car going home. Despite our previous experiences we packed all Max’s toys and prepared ourselves by collecting all our belongings. It was not to be. Yet again a test had proved negative and we had to stay another couple of days.

When we finally left the hospital we were all jubilant and so pleased to get away that we sang in the car on the way home.

We'd spent about four hours at home when I saw Max briefly shudder. This wasn’t like anything I’d seen before and I felt very uneasy. We’d seen rigors, or the shivering which precedes a very high fever, but in this case the shudder was momentary. Max seemed fine. We took his temperature and there was nothing amiss.

Yes there was. All parents have a child-radar but when you watch a child with cancer it becomes super-tuned. It is intuitive and is correct most of the time.

I took Max back to the hospital. They asked why we'd returned. Max was running round like a maniac and playing with the other children. I felt very sheepish but said that I was concerned. At times like this you start to wonder about your grip on reality. On the one hand you act very naturally and emotionally as a parent, on the other you have to gauge the symptoms you see from a dispassionate and medical point of view. There is a very fine line between sheer false panic and having a genuine reason to be alarmed. It is not easy.

The nurse could detect nothing wrong with Max, but as a precaution decided to flush his line and take a blood sample. As she flushed his line he started to shudder with rigor and quickly became very quiet and subdued. Within five minutes he began to shut down both mentally and physically. I watched him sink very quickly. The nurses immediately recognised the problem. It was a line infection. When the line was flushed the infection was pumped around his body effectively causing instant blood poisoning. This is very frightening to watch and I had seen this happen to Max once before. I watched him approach coma as the minutes ticked by. I’d learnt from my previous experience that if a nurse is assigned to a child’s bedside and takes readings every minute or so then the situation is very serious. No machines here. This is no place for machines because an intelligent assessment is required, time is critical, and every second counts.

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