Cancer boy who planned his own funeral faces his toughest test…coping with miracle recovery: Deryn, 14, reveals his struggle to accept a new lease of life after he was given just days to live
- Deryn Blackwell is one of five people on the planet to get the rare disease
- He had been preparing for his own funeral before he began his recovery
- Was told that ‘he wouldn’t see Christmas by doctors’
- Medical professionals are now puzzled as to how he has survived
- His parents claim that during the ordeal he was ‘relentlessly optimistic’
It would have been the quirkiest of funerals.
The 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 be waiting in specially selected fancy dress.
And Deryn Blackwell, just 14, was to be laid to rest sporting his pink mohawk hair cut and wearing a suit.
Second chance: Deryn staying positive in hospital, pictured during his fight with cancer
‘I thought I should probably turn up at my own funeral reasonably well dressed,’ he says with a wry smile.
But the boy who had suffered two types of cancer and was given just days to live last December has now found himself on an unexpected road to recovery – one so astonishing it has left the medical community dumbfounded.
Deryn, too, is finding it difficult to understand. While others are rejoicing at his good fortune, he is trying to come to terms with his miraculous survival.
‘He found it easier to deal with dying,’ admits his mother Callie, 33. ‘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.
He was told he wouldn’t see Christmas, but Deryn, who is the only person in the world to suffer from both leukaemia and another rare form of cancer has made a miraculous recovery
Doctors are at a loss to explain why Deryn Blackwell, who is one of just five people in the world with Langerhans Cell Sarcoma, has had such a miraculous recovery
‘And then someone slams that door shut in your face.’
After four years of fighting and, eventually, finding himself at peace with the prospect of his own death, Deryn has had every certainty removed, says his father Simon.
‘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.’
Deryn’s story is one that is both uplifting and perplexing.
His family members and his doctors think that his amazing recovery might have been his incredible positivity in his attitude towards both life and death
In 2010, aged ten, he 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.
The 14-year-old was diagnosed with the condition 18 months after he began battling leukaemia in 2010
The family moved from their home in Watton, Norfolk, and bounced between temporary hostels in Bristol, the city where Deryn’s transplants took place.
The first took place 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.
With Deryn’s body now in the grip of three major infections (the transplants had stripped him of his immune system), including a superbug that caused three of his fingers to go black and necrotic, they were told: ‘This is the end.’
The teenager underwent four bone marrow transplants – including two using his own stem cells – to try and make his body produce his own blood products again
The cancer survivor had an incredibly resilient outlook, smiling while fighting off infection and undergoing treatment
Before he found out he was going to survive, Deryn had come to terms completely with the prospect of his own death, his family saying that he was ‘looking forward to what was coming next’
The family thought the painful saga of Deryn’s years of treatment, from dose after dose of vicious drugs, radiation, chemotherapy and more than 300 procedures, was finally over.
As time ran out for him, Callie even dyed her hair a vivid pink to cheer up her son.
‘All that was keeping Deryn alive were the antibiotics, which I thought of as a form of life-support machine,’ says Callie. ‘The hospital told us that if we took him off them, his body simply would not be able to fight the three major infections he had.
‘So we took the decision, 50 days after his final bone marrow transplant, when we thought that it had totally failed, to take Deryn off the antibiotics.’
Many celebrities rallied behind Deryn in order to help him complete his ‘bucket list’ before he died. (Pictured: Deryn with comedian Russel Howard)
As Callie looked at her son – thin, pale and with lips black from infection – she accepted she needed to prepare for his death as he had now done.
‘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,’ says Callie.
‘He said he was looking forward to see what was coming next – the next adventure.’
Indeed, Deryn’s relentless optimism, even in the face of failed surgeries and devastating chemotherapy, had brought numerous celebrities to his bedside as they helped him tick off his bucket list.
TV star Paul Hollywood helped Deryn fulfill a dream by taking him for a spin in a series of fancy cars
Deryn’s father Simon had been a contestant on the Great British Bake Off, prompting the judge Paul Hollywood to get in touch with him when he heard the news about Deryn
Simon had been a contestant on the Great British Bake Off in 2011, and in November 2013 judge Paul Hollywood got in touch to arrange a day for Deryn to ride in supercars, including a Ferrari and Aston Martins.
Once off the antibiotics, however, the doctors gave Deryn less than a week to live.
The family moved into a hospice on December 11, and he said his final goodbyes. ‘We had Christmas on December 14 because we didn’t think that he would make it to the 25th,’ says Callie.
Yet 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.
Deryn remained consistently upbeat until the very point he thought he was going to die, right before his recovery, displaying a relentless optimism in the face of his own mortality
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.
What emerged was not a finger raw to the bone but one that seemed completely healed.
‘It was a miracle,’ says Callie. ‘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 deemed by the doctors as ‘impossible’.
‘Two months ago we were getting ready to cremate Deryn and now they are telling us that his treatment is over,’ Callie adds.
Now the Blackwells are forming their own charity, Do Everything, which will run residential camps for young teenagers diagnosed with cancer.
Brave cancer sufferer Deryn Blackwell pictured with Birds of a Feather stars Lesley Joseph, Linda Robson and Pauline Quirke during his fight with the disease
Originally intended as a legacy, Simon says Deryn plans to be the charity’s driving force, putting his experiences to good use. ‘Deryn is finally feeling like he can have a purpose in life,’ says Callie.
‘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