September 19 2014 Latest news:
Thursday, October 24, 2013
A brave and inspirational teenager facing the most crucial point in his three year battle with cancer has told his mum “if my time is up then my time is up, I’m not scared”.
People I would like to meet:
The guys from Big Bang Theory
Simon Pegg and Nick Frost
Experiences I would like to have:
To ride in a Lamborghini Quattroporte, Pagani Zonda, Enzo Ferrari, Aston Martin DB9, Aston Martin Vanquish, Bugatti Veyron supersport, Lamborghini Aventador, Audi R8 and some other really fast cars
A ride in a hot air balloon
Swim with turtles and dolphins
Go on an African Safari
To ride in a fighter jet
Be drawn as a Family Guy character
Watton’s Deryn Blackwell, 13, was diagnosed with leukaemia aged 10 and later developed Langerhans Cell Sarcoma as well – one of only six cases in the world.
Thought to be the only person to have both conditions at the same time, the Wayland Academy student has been in Bristol since February after undergoing and recovering from a bone marrow transplant.
Eight months after the procedure doctors told Deryn’s family his marrow had failed to graft and the potentially life-saving procedure has not worked.
Tomorrow is Deryn’s last chance – after four doses of chemotherapy to eradicate any donor bone marrow stem cells still left in him, the doctors will try the last bag of Deryn’s own cells.
Callie Blackwell, 34, gave up her job as a bouncer when Deryn became ill.
She says she is “constantly fighting fires” trying to make sure her family is comfortable and happy.
From transforming Deryn’s diet in to a holistic and healthy one, to putting Dylan in to school in Bristol so the family can be together – she is always reacting for the good of her children.
But she said finding out your oldest son could have not long left to live was not the tearful situation she imagined.
She said: “I just have to think ‘it is what it is’. No matter of crying is going to help.
“I have spoken to people who have lost their children and I remember how un-upset they were.
“I remember thinking ‘why are they not more upset’. But you accept it because it has happened, and that’s the way I am.”
The results could take up to three weeks to come back, but his mother, Callie, said if it fails then there are no other options left.
“If it doesn’t work then we probably have four weeks left with him, it could be a lot less,” she said.
“I have spoken to Deryn and he knows how serious it is. But he said he’s not scared. He said ‘if my time is up then my time is up’, he is willing to deal with that, and really that’s all I could ever wish for, that he’s not scared.”
His nine-year-old brother Dylan, dad Simon and mum Callie, both 34, had been commuting between Watton and Bristol weekly up to two months ago until they de-camped full-time to a house provided by a charity near to the Bristol hospital.
During his time in Bristol Deryn has undergone intensive total body radiotherapy and targeted radiotherapy to his throat, where tumours were found.
He spent long periods of time in total isolation because of his low immunity, akin to a newborn baby’s, has battled the graft-versus-host disease (GVHD), a common complication after tissue transplants, all before finding the drugs given to combat a virus had killed his new bone marrow.
Despite all his treatment, Deryn, who is 14 on December 1, has remained a cheeky and cheerful character, charming hospital staff and keeping his thousands of Twitter followers amused,
But his mum said his morale has been slipping and Deryn says he wants to give up.
“In the last few days he has started to say he doesn’t want to be alive any more,” she said.
“I have always respected his choices but this time I said he could not think like that. I was firm and told him he will go ahead with chemotherapy. I am not letting him give up, and he knows that.”
The family had hoped to be back in Norfolk by now, with Deryn being treated as an out-patient at Addenbrooke’s Hospital.
But despite complications and a prolonged time away from home, school and friends, Deryn says if his last chance treatment doesn’t work, then he does not want to return home to Watton.
“He said he doesn’t want to take death back to the family home,” his mum said.
“I told him not to worry about that and not to make decisions just to protect the family. But any child his age shouldn’t have to speak or think in that way.”
With his family, Deryn has drawn up a ‘bucket list’ of the special things he wants to do.
From rides in fast cars, to a safari, meeting celebrities and being drawn in to the comedy Family Guy, the list is to give Deryn mental strength to believe he will live to achieve.
Great British Bake Off judge Paul Hollywood has promised him a special day out with his Aston Martin which the family hope will keep Deryn going and remind him that he has a lot to live for.
The family spend all their money on healthy food, fuel to travel to and from Bristol to Watton and bills and say it is hard to keep up with their new way of living, despite various donations.
If you can help the family or want to follow their daily progress visit www.doeverything.org.uk or follow them on Twitter at www.twitter.com/_DoEveRYthiNg and use the hastag #SmileforDeryn to show your support.