Newsletter Signup x

Blue's story

Blue was diagnosed with acute myeloid leukaemia (AML Mk 4 in March 2011. Blue’s mum, Francesca tells their story so far:

Blue boy with nasal tube

The symptoms on his body

Blue was diagnosed with acute myeloid leukaemia (AML) Mk 4 in March 2011. His symptoms were bruising on his body and nose bleeds, a sign that his platelets were low. He was blue-lighted to William Harvey Hospital in Ashford where he was found to have leukaemia. We were then transferred by paediatric ambulance to Addenbrooks in Cambridge almost 150 miles away from friends and family where it was to be diagnosed as Acute Myeloid Leukaemia MK 4, an aggressive type of blood cancer with a less than average survival rate. After 10 days we were transferred to The Royal Marsden in Sutton, where intensive chemotherapy began.

 

Remission then the cancer returned again

Blue went into remission in August 2011 but by November 2011 it had returned more aggressively than before. Again we went into an intensive treatment programme. On February 13th 2012 it was found to be refractory and there was nothing more they could do for him so we were sent home with palliative care and I was advised to make his last few weeks as comfortable as possible. I WAS NOT GIVING UP THAT EASILY and begged to see a consultant. 10 days later we saw two doctors at The Royal Marsden. They said they had two drugs that had never been used on a child of Blues age before and it only had a 10-15% chance of working but it was highly likely the toxic treatment would kill him.

 

Blue's donor Andreas

Blue received a bone marrow transplant from a donor in Germany

I took the risk and it worked and Blue was able to go forward for a bone marrow transplant from an unknown donor in Germany seen in the photo. Blue had his transplant on the 10th May 2012. 28 days later Blue became extremely ill and contracted many post-transplant complications, pneumonia, tifilitis, C Diff, Ssepsis, BK virus, ulcerative Colitis , Klebsiella, severe GVHD of the gut and bowel and many more. Basically his frail body was fighting itself. His body wasted from the intensive chemotherapy and unable to drink or eat. Blue was in intensive care continually, at one point I was told they didn’t think he would make the morning so I asked for a priest. Blue was a fighter and after an horrendous time fighting complications after transplant (far too many to list ) he finally left hospital in July 2013 after having spent two years and four months, two birthdays and two Christmas’ in isolation.

 

Blue wear the ribbon ccam 2018

Declared medically cured

Blue was finally declared “medically cured” in May 2017, five years to the day of his transplant. The Royal Marsden have declared him “their miracle” and one of the doctors said in 25 years of medicine and haematology, he had never seen anyone with such a bad cancer go through to a cure. The drugs Cyclophosphamide and Etoposide are now regularly used on children due to Blue’s bravery and have gone on to save many more lives.

 

Newsletter icon

Know someone who might be interested in fundraising?

Email this page to a friend!

Developing models to test new drug treatments for childhood leukaemia

New approaches to the treatment of childhood leukaemia are being developed all the time, and with this project, ...

Read more

Get Involved Stories – Cycling London to Paris May 2012

In May 2012 Stuart Byford, Katie Nicholas and Mark Foster cycled from London to Paris to help raise ...

Read more

Understanding treatment-resistance and disease-spread in childhood gliomas

This project is looking paediatric glioblastoma (pGBM) and diffuse intrinsic pontine glioma (DIPG), two brain tumours that affect ...

Read more