September 2 2014 Latest news:
Tuesday, February 19, 2013
Deryn Blackwell has been boosted by celebrity support and international media coverage since the EDP talked to him last week as he prepared to travel to the Bristol Royal Hospital for Children to prepare for his bone marrow transplant on March 1.
The 13-year-old Wayland Academy student was diagnosed with leukaemia when he was 10, but two years into treatment he was told he had relapsed and also developed Langerhans Cell Sarcoma – one of only six cases in the world.
He is thought to be the only person to have both cancers at the same time.
Since travelling to Bristol with his family on Thursday, he has received good luck message from Alan Carr, Simon Pegg and Linda Robson on Twitter, and appeared in the Daily Mail, Daily Telegraph and Fox News in America.
He arrived in Bristol on Valentine’s Day, and shared a romantic window-side table with his girlfriend, Kim, at a pizzeria in Clifton, while his parents and younger brother Dylan sat nearby.
The hospital have provided the family with a large, comfortable apartment and on Saturday, the day before Deryn’s treatment started in earnest, the family “ate for England” at a buffet restaurant where the staff made him a special good luck cake.
He will soon be put on a “clean diet”, which cuts out any foods that could be a source of infection, such as soft cheese.
The following morning Deryn answered a series of questions about his eating, drinking and toilet habits before he started a three-day course of Palifermin, designed to avoid some of the side effects of radiotherapy.
Writing on her blog, his mother Callie said: “He made sure that the nurses there knew he was a joker and that he’s going to make a name for himself at Bristol.
“I don’t think they’re going to forget him easily.
“When asked if he liked to have his poos called by something else, eg stools or motions, Deryn said ‘Fred’. This has gone down on the paperwork!”
After a second dose of Palifermin yesterday, Deryn’s family spent the day together in Cardiff, ahead of his first radiotherapy session tomorrow.
Deryn’s father, Simon, said: “He is workman-like. He just wants to crack on and get it done and get on with the recovery stage.
“He is cheerful and cheeky and hard to wake up. He is just like any other teenager.”
With his girlfriend and brother with him in Bristol, his father joked that all Deryn’s parents provide is food, transport and discipline.
Simon added: “The whole process has been underpinned by believing we don’t let it have any of our energy or time.
“Ultimately, we have got to finish everything on a positive note and signpost him to what do we do when the treatment finishes and where do you want to go on holiday when it finishes. That keeps him motivated.”
His pre-operation treatment will see him undergo total body radiotherapy and targeted radiotherapy to his throat, which is where the tumours were found.
The bone marrow transplant itself is only expected to take a couple of hours, but Deryn will have less immunity than a newborn baby and spend between three and seven months in total isolation.
The Blackwells know very little about Deryn’s bone marrow donor, except that he is a young man from Germany described as a 9/10 match, and whose bone marrow will be extracted, bagged, refrigerated and flown to England in the 24 hours before Deryn’s operation.
Simon said: “Deryn will more or less be on the brink of death... then they fire it in in two hours and then it’s in. Then the saving grace will come and do its best.”
Mrs Blackwell wrote: “I think we’re going to be just fine at the Bone Marrow Transplant Unit.
“I have a very good feeling that he will breeze through this also and come out the other end laughing with that same smile on his face.
“We have been inundated with goodwill gestures and they all mean so much, thank you again. I will never stop saying thank you.”
Send Deryn a message on Twitter using @_DoEveRYthiNg or see http://doeverything.org.uk/