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I hadn’t forgotten one doctor’s words to me about my child being made a ward of court if we went against traditional treatment methods.
If either of us were to get into trouble over this, Simon wanted it to be him. He wasn’t going to allow anyone to take me away from the children just for alleviating Deryn’s suffering.
He was allowed a dose every seven to eight hours but within an hour of being given some, he would press the buzzer to call the nurses back in.‘When can I have my cyclizine? I had known drug addicts and, just weeks short of his 14th birthday, my son was ticking all the same boxes.
I took a small, empty syringe from the medicine cupboard in the hospice and quickly checked that there was no one outside. I asked him how he was feeling.‘I feel relaxed,’ he told me. Then I heard Deryn tell the nurse he didn’t want it. Everyone knew how much he relied on it to help him. Any parent in Callie’s situation would have felt the desperation she felt and compulsion to help her son who was suffering so badly.
Only 50 cases have ever been recorded and only five people in the world currently have it.
But no one had ever been found to have the two cancers combined, making Deryn unique. By 2013, after nearly four years of hospital treatment, it seemed that the only thing left for him were opiate drugs to ease the pain as he reached the end of his life.
It was New Year’s Eve so staff levels were minimal. Families do turn to alternative therapies, internet-based solutions and even outlandish claims that could help their child become pain-free and survive.
I drew up 5ml of the honey-like substance, which had a sweet, floral flavour. At the end of life particularly, it is understandable to feel that conventional medicine may have failed and look elsewhere.