Cancer Teen Who Planned His Own Funeral Makes Miracle Recovery

14/08/2014 16:58 | Updated 20 May 2015

Deryn Blackwell who has been given the all clear from cancer

A teenager who planned his own funeral after he was told two months ago that he had just three days to live has astounded medical professionals by fighting back to recovery.

Deryn Blackwell, 14, from Watton in Norfolk, is the only person in the world to have been diagnosed with both leukaemia and another rare form of cancer.

Two months ago after contracting another disease which attacked his immune system, he was told by doctors he would die before the new year.

Deryn was sent to an end of life hospice where doctors and his family prepared him for the worst. But now his body is fighting back and has started to produce red blood cells.

The future was so bleak for Deryn that he planned his own quirky funeral. His coffin was to be driven in the same hearse that once carried Winston Churchill, then brought into the crematorium to the sound of Move Your Feet, a 2003 pop hit by Danish duo Junior Senior.

Inside, the relatives would have been waiting in specially selected fancy dress. And Deryn would have been sporting his pink mohawk hair cut and wearing a suit.

But all those plans have now been scrapped – although Deryn, who had accepted his fate, is now finding it hard to come to terms with his new lease of life.

His mum Callie, 33, said: "He found it easier to deal with dying, He described it as having an open door in front of you with a light, and you know that when you walk through that door all pain will end and you will be free. And then someone slams that door shut in your face."

His dad Simon said: "He actually stopped eating on purpose in the hope that it would kill him because he was so disappointed that he now wasn't dying. He wanted an end to it."

In 2010, aged 10, Deryn was diagnosed with leukaemia. Eighteen months later, he was told he had a secondary cancer, the extremely rare Langerhans cell sarcoma.

Only 50 cases have been recorded and only five people in the world have it. But no one had ever had the two cancers combined.

Doctors told the Blackwell family that the only hope was a bone marrow transplant so the family moved to Bristol, where Deryn's transplants took place. He had the first in March 2013 and during the following months three more attempts were made. They all failed.

After the final transplant, doctors took Callie and Simon into a small room at a Bristol hospital and told them: "This is the end."

Callie said: "Deryn said that when he finally accepted he was going to die, it was the best day of his life because it gave him this calm and peaceful feeling, like he finally had control over his life and where he was going.

"He said he was looking forward to see what was coming next – the next adventure."

Deryn was taken off antibiotics and doctors gave him less than a week to live. The family moved into a hospice on December 11, and he said his final goodbyes.

But as Christmas rolled into New Year, it became apparent to both Deryn and his parents that his body was not being ravaged by infection, nor were his organs shutting down as the doctors had predicted.

Then, in the second week of January – almost a month after Deryn had been given just days to live – he accidentally tore the bandages off one of his fingers. Instead of it being raw to the bone, the finger had completely healed.

Callie said: "The doctors couldn't comprehend how he had managed to totally fight off the vicious infection in his fingers without any bone marrow, without an immune system and without drugs. They still can't explain it.

"All of a sudden, the doctors were saying Deryn could have a chance, though they could offer us no explanation as to how."

Two weeks later, the doctors confirmed that he was producing white blood cells. Some 104 days after his fourth and final bone marrow transplant the cells had finally grafted.

It was something that had never been seen before, and was regarded by the doctors as 'impossible'.

Callie said: "Two months ago we were getting ready to cremate Deryn and now they are telling us that his treatment is over."

Now the Blackwells are forming their own charity, Do Everything, which will run residential camps for young teenagers diagnosed with cancer.

Originally intended as a legacy, Simon says Deryn plans to be the charity's driving force, putting his experiences to good use.

Callie said: "Deryn is finally feeling like he can have a purpose in life. A few weeks ago he was thinking merely in hours, and now he is thinking in days and years, about having a career, running the charity and moving abroad.

"For the first time in four years, he can picture his own future."


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