September 21 2014 Latest news:
By Rosa McMahon
Friday, February 7, 2014
He’s the teenager from Watton who has taken on a rare duo of cancers – and won. But who is Deryn Blackwell? ROSA MCMAHON went to Bristol to find out.
Deryn Blackwell is the only person in the world known to have Langerhans Cell Sarcoma and leukaemia at the same time.
To those who follow him on Twitter he is known as the “chemo kid” who defied doctors and has grown back his own bone marrow weeks after being told he would not make it to Christmas.
After travelling to Bristol in February last year for a life-saving bone marrow transplant, the Blackwell family has lived in a house provided by a charity, a hospice where they believed Deryn would die.
Now, after a year in Bristol and with doctors telling Deryn he is getting better, the family hopes to sign for a permanent home in the south west, moving away from Watton.
But 14-year-old Deryn, despite performing what some are calling a miracle, can’t understand why he is getting so much attention – he believes he is “nothing special”.
Instead, he wants be a teenager again, get back out on his BMX bike, see his friends and focus on getting his body back into a healthy shape.
To get there he is working out daily at a local gym, gently working on his legs and chest to build up strength and self-esteem.
“It’s not the illness any more because I haven’t got it. It’s the physical side. I was always so fit,” he said.
“I had a six-pack, all defined, but watching yourself lose the lines and get a belly is the worst.
“I didn’t care about my hair falling out from chemotherapy. It’s that I know it is really hard to get back to the way I was. Ever since I was three or four years old I would be climbing trees, running around. I played rugby.
“With chemo you just sit in bed, they hook you up and that’s the easy part. But four years on and I am still pasty and thin, my knees are wider than my thighs, that’s the most upsetting thing, especially when you’ve come from feeling so fit.”
Deryn was diagnosed with leukaemia when he was just 10. Before that he was treated for autism and Tourette’s syndrome. Now Deryn no longer has the two cancers, he is fighting severe aplastic anaemia, where the bone marrow does not make enough blood cells for the body.
Deryn’s journey has captured the imagination of thousands and he has become something of a celebrity in Norfolk.
Like any well-known person he is known only by his first name and after months of being away from the county he fears he could be mobbed when he returns.
“I have so much pressure on me to be happy all the time. Sometimes I can’t be upset and can’t have meltdowns,” he said.
“You feel you have to be strong all of the time, and that’s the most draining thing.
“In Watton you can just say my name and everyone knows who I am and what I have been through.
“I don’t like all the attention and I don’t see why people think I am so extraordinary.
“All I am doing is taking the drugs and getting on with it, like every other patient. I never think I am anything special. But apparently it’s the way I deal with it.”
Because of his conditions Deryn says has taken an interest in spirituality and thinks about his own mortality.
He said: “When I was ill I just felt I was going to throw up all the time, and it would be like that for days. That really depressed me and I got to the point where I didn’t care any more.
“I just wanted to end it or take away the sickness, just to make me feel well again. You do get to the point where you accept it [death] and you are happy, you don’t care. It almost feels like the best part of your life, the acceptance. You are comfortable, cosy and warm.”
See tomorrow’s EDP for more on Deryn’s family.