I did not generally think about Max surviving his illness. This was too remote and too fanciful a notion. I was not positive and I was not negative, but such concepts as survival were beyond my current mindset. In order to survive I pushed such thoughts to the back of my mind. When I told people that this was how I viewed the world, there was always the same reaction.
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“You must be positive.” They did not know, they had no understanding of the complexities, risks and multitudes of hurdles which had to be overcome before I could start to think that way. I was not alone. I met other parents of relapsed children who dared not consider their child's long term future. Today and tomorrow were all that mattered. Your worldview is collapsed like a concertina. What happened a couple of days ago does not matter. What will happen next week does not matter. There is only the here and now.
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During Max’s leukaemia Sara and I felt helpless because we were unable to help Max deal with his illness on a personal level. He was four and a half years old and was not at an age where he really understood what was happening to him. We helped him with all the love that we could give, but did not know how to help him to fight the illness himself.
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This was not the case during his second cancer. He was seven years old. He had been through extensive and powerful chemotherapy during his first illness. He was also at an age where he could comprehend the consequences of his disease. Sara and I made a decision just after Max had been diagnosed. We decided to do anything and everything to keep him alive. This may sound very odd. Surely that is the first thing any parent would do, and in a sense we had done this. We cared for Max and gave him as much love as we could muster and more. This decision differed in that we decided to take an active role in his treatment. We wanted to make a real difference beyond the day to day care and nursing. We wanted to teach him how to help himself fight his illness.
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In order to do something positive I had to dismantle my self protective wall. I had to go against my instinctive feelings and force myself to believe that Max would survive. I knew that I could not convincingly give him the will to fight for his life if I lacked that faith myself. He would sense the lie immediately. These cancer children, they know. They have been to places that we healthy adults cannot conceive. They make too many visits to death’s door to remain the innocent children they once were. It is frightening to watch them become wise beyond their years. Sometimes they become wise beyond our years. They visit places that we cannot even imagine and they learn and absorb.
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