Memories of Max - A Father's Story

Chapter 3 - Waiting

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How do you grieve for the living? An odd question? Not really. The news of a childhood cancer is met with emotions similar to that of grief. How do you crystallise, savour and preserve every moment, every laugh and joke, every comment and nuance? Of course, you can’t. You can keep diaries, take photographs or videos but these are very shallow shadows of what you crave.

We watched Max's swelling which appeared to be visibly changing shape from day to day. There was no treatment, there was no prognosis. We waited over three weeks to find out the nature of Max’s second cancer. Knowing the illness, but also knowing that the doctors do not know what type, or how to treat it, leaves you with an interminable cycle of pacing restlessness, frustration and nervous surreal boredom.

We waited and waited for news and some indication which would tell us what would happen next. We waited for news which would let us grasp the time ahead, news that would give us some sort of tangible future. Without this news we drifted lost without a sail in a sea of helplessness.

We went to see the consultant a number of days after the initial diagnosis.

“I am afraid that we do not have much news regarding the prognosis. Without a precise knowledge of Max’s illness, we are unable to chart the next stage.”

Sara and I had researched the existence of swellings in leukaemia and she asked the next question.

“What exactly is this lump? It looks like a tumour, but Max had leukaemia which does not produce tumours. Is this Chloroma?”

The consultant looked surprised. Chloroma is a rare symptom of Acute Myeloid Leukaemia which gives rise to hard conglomerations of white cells which look like a tumour. He seemed surprised that we were aware of this symptom.

“Well, it could be Chloroma but we are just not sure yet.”

I was still confused. We knew that they could not treat Max again for Acute Myeloid Leukaemia so why was the hospital not taking action? As far as I could see there was only one course of action and that was to provide Max with a quality of life as a terminal child.

“Why are you not doing something anyway? Why is there this concern about treatment? If Max is terminal then why are you not giving palliative* treatment?”

* pain relief with no intention of cure

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