Memories of Max - A Father's Story

Chapter 2 - The Unit

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Hickman lines and other intravenous lines are a godsend in childhood cancer treatment. The alternative to an intravenous line are temporary intravenous tubes inserted into veins in the arm and this method is used prior to the line being inserted. These are awkward and unwieldy and caused Max much concern and often pain. He dreaded them on the few occasions that they were used. The alternative to these is direct injection and withdrawal of blood which is traumatic for the child.

During Max's leukaemia we spent all our time at the hospital. His second cancer was different. We would stay in hospital when the chemotherapy was being administered or if he was ill, but the rest of the time was spent at home. That is where we lived, but we would visit the hospital every other day or two days for checks and further medication.

There was one insidious aspect of Unit life which was easy to slip into and which we later learnt to avoid. When Max was admitted for his leukaemia our focus was totally on his wellbeing and we paid scant respect to our own needs. Both of us tried to do as much as possible and more. This can lead to a damaging downward spiral.

You don't get enough sleep because of the worry and the disturbances during the night. You stop eating properly because you're tired and worried and cannot think of your own needs. You stop coping because you’re so physically and emotionally run down, and so you get less sleep ..... and so it continues. It takes very little time for this type of loop to assert itself and it pulls you down very quickly. Sara and I realised that we had to take alternate nights looking after Max or else we would quickly become unable to provide the very support that we wanted so much to give.

Within the Unit there is also the psychological aspect of not only coming to terms with your own child’s cancer, but of coming to terms with the illnesses of those who surround you. If you have a child with a ‘good’ cancer then you wonder how the parents of a child with a ‘bad’ cancer cope. To me, a good cancer is one where the chances of survival are above 60% but then as Einstein would say - ‘It’s all relative’.

That was Class One in my arbitrary classification of childhood cancer and during Class One you become aware of Class Two.

Class Two starts when you return to the Unit because of relapse. A relapse is when a child previously declared free of the disease has a re-emergence of their cancer. Relapse. This is the sandman in the nightmares of parents of cancer stricken children. It is the ogre which follows you by day and disturbs your sleep at night.

Relapse is the Damoclean sword hanging over your child. Interminable and held by such a thin thread. You don’t know if or when it will drop. You don't really understand the consequences if it does drop. All you know is that it will be hard. You have seen the relapses during your child's first treatment. You know what it means and how much it diminishes your child's chance of survival. You wonder if you are capable of coping again. It seems impossible and yet you have seen so many families do just that.

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