September 18 2014 Latest news:
Tuesday, January 28, 2014
Five weeks ago Deryn Blackwell and his parents were given the news every family dreads hearing – your son is unlikely to survive until Christmas.
The charity due to be set up by the Blackwell family won the backing of a celebrity comedian – Russell Howard.
The funny-man donated thousands of pounds to the Deryn’s charity Do Everything after a series of comedy gigs and will be a trustee and patron of the charity.
After spending weeks in different centres across the country set up for seriously unwell cancer patients, Deryn says he knows what works and what doesn’t for youngsters like him – and what is the most fun.
The family has now pledged to create a centre for children aged between 10 and 18 for them and their families to relax as well as do the activities they have always wanted.
And the comedian has thrown his backing behind the fund which needs a minimum of £5,000 in its coffers to be set up.
The family said the foundation was about Deryn’s legacy – but said he may even now open the building himself.
Yet, some five weeks (and two Christmas Days) later, 14-year-old Deryn has amazed his parents and doctors treating him, by continuing to battle the rare duo of cancers.
So sure were medical experts about the teenager’s condition, the Blackwell family even had their Christmas celebration early after three failed bone marrow transplants.
He is thought to be the only person to have the duo of cancers Langerhans cell sarcoma and leukaemia at the same time and travelled to be treated at the Bristol Children’s Hospital in February last year. After living in a house next to the hospital provided by a children’s charity, the family decided to move in to a hospice to care for Deryn, 14, in his final weeks.
“I’m not sure how to feel about this, a massive mixture of emotions right now.
“I am very anxious, mainly because there’s a safety net here [at the hospital].
“They do a complete MOT on Deryn every single day and what if I miss something back at the house? What if there’s something going on with him that I can’t see? What if, What if, What if?”
“We have been so lucky and so blessed to have known Deryn for the last 14 years and we will be eternally grateful to him for taking us on a
rollercoaster of a ride.”
“I can write this very matter of fact and you may be thinking that I am cold and heartless but I feel detached when I write, this is not my boy I am writing about - I feel that this is a story I am writing and I am now writing the last chapter.....”
“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.”
“I will carry on Deryn’s work and do what he would have really wanted. I will be getting really stuck in to raising money for the project, driving it forward.”
On driving in Paul Hollywood’s fast cars: “Deryn had a massive smile and that’s priceless. It was a wonderful day. I cannot thank Paul Hollywood enough.”
But now his mum Callie, a former bouncer, said they now have to move out of the hospice as Deryn no longer needs that high level of care.
Medics have told the former Wayland Academy student’s mum and dad Simon that they do not have an explanation for Deryn’s turn around but that his body is now making red blood cells and growing back his own bone marrow.
In a blog post Mrs Blackwell quoted the doctors as saying: “Deryn, we sent you to the hospice because we firmly believed that with the catastrophic infections that you had and the fact that you had absolutely no immune system, you would not have been able to live much longer than a few days once away from the hospital, death was imminent.
“This is no longer the case - it seems that you are not dying anymore.”
But for Deryn’s family the news is welcome, but treated with caution.
“It’s still up and down,” Mrs Blackwell said. “It’s on the up and I am so scared to get too excited in case it goes down-hill. But he’s getting better and better each day.
“The doctors told us that was it, he is going to die, but now the doctors haven’t got a clue because he is making his own blood cells.
“I thought about asking the doctors ‘were you wrong?’ or was there a machine failure?
“But I think I do believe in miracles, I can’t think of any other explanation, even the doctors have been left scratching their heads. “
At his worst Deryn was on 35 drugs a day – now he is only on one. His mum says he hasn’t been sick in three weeks, which was a regular occurrence, and he is far more mobile than he was.
Plans for Deryn’s funeral has been made, his will had been written – but now the family say they are aware that Deryn’s health could change at any moment, but they are feeling positive for the future.
Yesterday Deryn made his first appearance at a hospital school in Bristol with his younger brother Dylan, allowing him to get back out in to the community, and feel “normal” again.
The family are now looking to re-locate to the south west permanently and are on a council house waiting list.
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