Callie Blackwell woke once more expecting to find her son Deryn lying dead next to her.
The pair lay were sleeping just yards apart in the hospice bedroom where Deryn had been sent to spend his final few days.
He was in extraordinary pain. His frail body was battered from round after round of chemotherapy and radiotherapy, he was hooked on the painkiller morphine, was unable to eat, covered in sores, nauseous and had lost all his hair.
It was 70 days since his last bone marrow transplant and it hadn’t worked. The family knew all too well no transplant had ever grafted after more than 50 days. There was no hope left.
And, after a relentless four year battle with a one in a billion form of cancer , even Deryn was losing his previously indefatigable spirit.
“The doctors had said there was nothing more they could do,” says Callie, 37, who lives in a small Norfolk village near Bury St Edmunds.
“We celebrated Deryn’s 14th birthday in hospital and then went to the hospice to wait.”
Then, as Deryn hovered between life and death, Callie and husband Simon took a huge decision. Unbeknown to medical staff, they decided to give their son cannabis to ease his pain and anxiety.
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