Thursday, 28 November 2013
The bravery and spirit shown by a Norfolk teenager in his battle against a rare duo of cancers has moved many over the last few months.
Deryn Blackwell, 13, from Watton, has been in hospital in Bristol since February after undergoing and recovering from a bone-marrow transplant which doctors hoped would treat his leukaemia and Langerhans cell sarcoma.
However, after weeks of waiting, the Wayland Academy pupil was told the donor’s marrow had failed to graft and his last chance would be to have his own bone-marrow stem cells put back in.
Over the last few weeks the family have been waiting patiently to find out whether that had worked.
Today, Deryn’s mother Callie Blackwell has posted a Facebook update on Deryn’s progress, which she has given us permission to reproduce.
“I don’t know where, how or even if I should start this post...
I need to write it down for me, I express my feelings through my words and as I write this, I am considering whether or not I will share it. Perhaps it should just be for me but then we have been supported by so many people over the years so I feel that I owe it to you all to keep you informed.
“Yesterday we were called into the quiet room yet again, away from Deryn yet again and yet again there were four Dr’s.
“The Dr’s have been talking about Deryn, as they do three to four times a day and they have all come to the agreement that Deryn’s last bag of cells is very unlikely to graft given the fact that it’s been 30+ days with absolutely no count.
“They talked a lot about supporting him now, giving him what he needs to help him the best way they can so that he is comfortable and in as little pain as possible.
“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.
“The granulocytes are going ahead, not now because they feel it may kickstart anything but now because they would like Deryn to be infection free as much as possible so that he can pass peacefully and not in pain and full of infection.
“I think the main reason for their chat was to let us know that we now need to start thinking about what happens IF Deryn is overcome by an infection in the very near future.
“Do we want him to go to PICU where he will be kept alive, the infection possibly made better by a series of tubes and drips when if he were to come out of PICU, he would still be no better off than he is now. Effectively it would be just prolonged the inevitable.
Do we want to let him go?
“That isn’t something we can really know just yet, I have that need to do everything we can for him, even if we know that it will be pointless.
“I can’t just let him go like that when there is even the tiniest of chances that he might be the first person in over 35 years to graft after 30+ days.
“They expect to see anything, IF there were to be anything from the Grans after 10-14 days so they are willing to let this go on for another two weeks and they will review again.
“If nothing new has happened then that’s it - we move onto palliative care.
“We could keep Deryn alive for some time yet with blood transfusions, platelets and granulocytes from various donors but this is just another form of life support, it’s an artificial process. The only way we can keep Deryn alive long term is if he can produce his own blood cells and at the moment, he can’t.
“This has gone on long enough, he has fought for long enough and endured far more than anyone should ever have to. It would not be fair to keep Deryn alive through artificial means, to what ends would it be?
“It doesn’t feel real - it feels like there was someone else there in that room listening to those words.
“But I know it’s real because I look at my boy, my little baby boy who will be 14 on Sunday and will be forever 14 and I cry. I cry because it hurts, it physically hurts and I can’t make it stop - no one can.
“I cry because of the lost potential, I cry because he could have been something wonderful, he IS something wonderful and this just is not fair.
“We walked back into Deryns room and he said “Please don’t cry mum, just tell me what they said”
“So, I told him - he just smiled and said okay.
“He’s at peace, he’s accepted this, I believe that he’s truly not scared or worried because he has had a long time to think things over and if anyone can teach me that everything is as it should be, it’s my brave boy.
“We are going to visit the hospice on Thursday, Deryn initially didn’t want to go but today he said that he would like to go. He feels that it would be for the best to go there if he doesn’t graft. I asked him if he were sure, we can wait until he’s seen the place before we need to make any decisions. He looked at me and said that he would rather go there because he doesn’t want Dylan (Deryn’s younger brother) to find him.
“Although that wouldn’t happen, he doesn’t know that and yet, even now - he is thinking of his brothers feelings and thinking of how we all will be.
“I keep crying and he keeps saying to me to not be upset and to just carry on as normal. I’m not to worry because it won’t change anything.
“Dylan has had a very hard time of it today, he was crying in the bathroom and when I opened the door, he stood with tears streaming down his face with his fists clenched - he snarled and then punched the mirror.
“He is so torn inside, we’ve put him through all of this too but we will all get through this as a family - we’ve got this far.
“Deryn has taken us all on such a wonderful journey but I will never regret the years I had with him, but I’m selfish and I want more!
“I know there is a tiny chance that he may pull some sort of Deryn miracle out of the bag but in all honesty, I’m a realist too, I don’t think that is going to happen now - I want more than anything for him to prove me wrong.
“I would give my own life if it meant that he could have one but I feel that this is the beginning of the end of this path for Deryn - he has taken us all on such a journey but we are nearing our destination.
“I envy Deryn in many ways, I envy his peace and I envy him because he will be forever innocent - he’s never going to be tainted, hurt or have to realise just how cruel this world can be. He has suffered so much but he has never complained, he has always seen it as his duty and something that he chose to experience.
“I am in awe of Deryn and I never want him to leave me but unfortunately, we don’t always get what we want xxxx
“Thank you all so much - please don’t leave us yet though, this journey isn’t over yet xxxxxxxxx”
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
Reproduced from the EDP24 website.