DoEveRYthiNg

One Boy Fighting Leukaemia and Lager

One Boys Fight Against Leukaemia and Langerhans Cell Sarcoma

I'd like you to meet Deryn, he really is unique. 

In fact, he's 1 in 7 Billion!

Deryn Blackwell is just 14 years old yet he has been fighting Cancer for almost 4 years. 


In 2010, Deryn was diagnosed with Acute Lymphoblastic Leukaemia and just 18 months later and whilst still on active Chemotherapy - Deryn was diagnosed with an extremely rare Cancer called Langerhans Cell Sarcoma.


There have been as few as 50 cases of LCS documented since records began and Deryn is believed to be the youngest of the 5 people currently alive with the disease worldwide.


To make Deryn rarer still, he is thought to be the ONLY ONE in the entire world to be fighting Langerhans Cell Sarcom and Leukaemia.


Because of the extreme rarity of his diseases combined, the specialists really didn't know what to do. So after much consideration from all over the world, they decided that  bone marrow transplant was his only option. 


The Dr's have been very honest and are not sure if this will work at all but while there was a chance, we had to take it. 


On 1st March 2013, Deryn had a bone marrow transplant.


Shortly afterwards, because of a virus he needed some more cells from his donor. 


Unfortunately on August 29th 2013, this transplant completely failed and he needed his own cells back to rescue him. 


On 17th October 2013, his own cells failed because of extremely rare complications.


Thankfully Deryn had one more chance left, he had one more bag of his own cells. 

The Dr's gave Deryn more chemotherapy and on the 29th of October 2013, Deryn has his own and final bag of cells transplanted into his body. 


Three days after the transplant, Deryn trapped his fingers and suffered TWO catastrophic infections in his hand.

He had Cellulitis and Herpes whitlow in his hand and he also had Klebsiella in his mouth, another catastrophic infection. 


40 days after a bone marrow transplant, the Dr's tell us that it is highly unlikely that someone will graft if they haven't already - after 50 days there is no way someone can graft. 

In their experience, no one has ever grafted after 50 days.


On December 11th 2013, at day 46, we were removed to a hospice where it was expected that Deryn would die within a few days.  


We were told that Deryn's fourth and final transplant had in fact failed and there was nothing more they could do, it was believed that once they took away the life supporting drugs that Deryn would leave us very quickly. 


After two Christmases, one New Year's Eve and quite a few worrying moments, on day 78 Deryn's bandages accidentally came off his fingers and he was miraculously - infection free! 


Deryn continued to improve and he started to produce his own blood products. 


On day 104 - Deryn officially enngrafted!  


Not one Dr can explain how Deryn fought off THREE catastrophic infections with NO immune system and then went on to engraft with what tests said was empty bone marrow!


After coming to terms and accepting that he was going to die, Deryn is finding it harder to accept that maybe he isn't. His future is still very uncertain and he is still extremely poorly. 



We are for the first time, starting to plan for a future with Deryn - we are planning to take him on holiday very soon and give him a life that he feels is worth living and that he is looking forward to. 


Thank you so much for visiting Deryn's page and for reading his wonderful story. 


** Miracles do happen and dreams can come true **



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