September 18 2014 Latest news:
Wednesday, February 13, 2013
When Watton schoolboy Deryn Blackwell was diagnosed with leukaemia, he and his family knew they had a fight for life on their hands.
But two years into treatment the 13-year-old was dealt the devastating blow that he had not only relapsed but now had developed one of the rarest forms of cancer.
In August last year Deryn was diagnosed with Langerhans Cell Sarcoma, one of only six cases in the world, and thought to be the only person to have both cancers at the same time.
Tomorrow, after leading oncology consultants around the world liaised to decide on the best course of treatment, Deryn heads to the Bristol Royal Hospital for Children for what he and his family hope will be a life-saving bone marrow transplant.
As they prepared for the journey, parents Simon and Callie praised their son’s incredible bravery and inner strength as he faces months away from home, most of the time completely isolated from the outside world, as he his stripped of his immune system and surgeons blast him with as much radiotherapy that they think his body can take.
“We are prepared for at least three months in Bristol,” said Mrs Blackwell.
“But that is if it is straightforward and nothing is straightforward with Deryn.”
“The cancer is so rare they have never treated it before but they have decided this is the best course of treatment. It is called an R3 protocol which involves 12 days of conditioning, total body radiotherapy and targeted radiotherapy to his throat, which is where they found the tumours.”
The bone marrow transplant will take place on March 1 and then he is put in total isolation for anything between three and seven months.
After that he will go back to Addenbrookes Hospital, in Cambridge, for at least a month.
His body will have less immunity than a newborn baby – so he will even have to have all his childhood jabs again.
Dad Simon said: “He doesn’t want to go, because he has just been in hospital for three months having intensive chemotherapy and only been home for two weeks. He will have to go back into that routine again but he is so positive at the same time and wants to get it over with, to get fixed and get back to school.
“He is so bright – top of the class in everything he does, and he wants to be a doctor.”
Deryn is a pupil at Wayland Academy and since being diagnosed with acute lymphoblastic leukaemia in 2010, some major fund-raising efforts have already bought him a laptop so he can do his school work while at home or in hospital.
But Mr and Mrs Blackwell have also found the cost of caring for Deryn through the treatment crippling financially as well as emotionally.
Family and friends have rallied round to support Deryn’s fund which also allows his parents to take time off work to look after him, and pay for the extra day-to-day expenses, such as travel costs, they would struggle to meet without help.
As Deryn’s immunity will be so low when he comes home they want to get him a tutor to enable him and younger brother Dylan to be home-schooled, lessening the risk of infections.
Their foundation DoEveRYthiNg has now raised more than £7,000 and the plan is to get officially registered as a charity when Deryn is well again so that they can continue raising money to help other children who have relapsed, and for research into Langerhans.
A fund-raiser last weekend, organised by friends Cheryl Feltner and Jason Sharwood, raised £3,600 with around 300 people turning up to an evening of entertainment at Mildenhall Social Club.
There were over 170 donated raffle prizes.
“We are so grateful to Cheryl and Jason and everyone who took the time to support us,” said Mr Blackwell.
“Deryn is 100pc certain he will come through this, but whatever happens he will have to have blood tests for the rest of his life and there are other risks such as cateracts and infertility,” he added.
“But the way he deals with his own mortality is incredible and it helps everyone else deal with it too.
“He believes that once this year is over he has the rest of his life to do what he wants.”
Get the EDP for regular updates on Deryn’s progress over the next few weeks and months
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