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.
The couple tracked down a dealer, met him at a service station, who gave them some cannabis which they took home and cooked on the family hob in a pressure cooker following instructions they’d found online.
From it they created an oil and it was Callie who placed a tiny amount of it in Deryn’s mouth.
It worked and calmed him immediately.
But what is truly extraordinary happened next. Because the family’s hospice wait went on and on. And on. Until very slowly Deryn’s condition improved. And today he is a happy and healthy 17-year-old studying catering, with friends, a girlfriend and enjoying everything life has to offer.
The total transformation in her once so sick son still seems to bewilder Callie. But it is testament to the ferocious love and determination of one extraordinary mother.
“I’m not here to say cannabis can cure cancer or is a miracle drug”, says Callie, a thoughtful and intelligent woman who was studying to become a nurse before Deryn’s last illness.
“But it did help Deryn and so I think we need to ask, ‘could it help others too?’
“I do think there needs to be more research into what cannabis can do. In some American states and across Europe it can be used.
“Obviously it is illegal so I was terrified if anyone found out what I was doing I could be stopped from seeing my dying son or lose my younger son Dylan to social services. But I had to try it. And it worked.”
It was the first week of the school summer holidays and Deryn was 10 when the family’s life first changed for ever.
“Deryn had always been so incredibly healthy, he’d never had a cold, never had a day off school, was training with the local rugby team and was the strongest, fittest boy in his year. HE loved that.
“Then he started complaining his food tasted like metal and he could feel something falling inside him when he laid on his side and one morning he was sick.”
He was sent for a blood test and within hours the family were called back urgently to hospital.
“We were in room 10 in the children’s assessment unit at the Norfolk and Norwich. Four doctors came in and I already knew it was going to be bad. They sat down in front of us and said there is no easy way to say this but Deryn has leukaemia .
“I burst into tears. My husband just looked totally shocked. Deryn said, ‘what’s leukaemia,’ I replied ‘cancer of the blood’. From that moment we were totally honest with Deryn about everything that was happening. Deryn has a mild autism and you have to be very blunt with him – and we felt it was his body he deserved to know.
“I tell people I wasn’t a cancer mum once but then within one second in that room I was and always will be. As soon as those words come out of the doctor’s mouth your life has changed for ever. For ever.”
And Deryn didn’t just have leukaemia – he had one of the most aggressive forms with the second highest white blood count the doctors had ever found.
The next day he began brutal chemotherapy and by the second day of the September he was back at school. He’d made an extraordinary recovery – although he was still weak and prone to infection and suffered various setbacks over the next 18 months.