Blue rang the end of treatment bell and will be 10 years in remission

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

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 a hospital in Ashford where he was found to have leukaemia. We were then transferred by paediatric ambulance to hospital 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 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.

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.

February update: My day as a Fulham FC mascot

It was amazing and I loved meeting some of my football heroes. Pogba spoke to me and I told him to have a fair game and he laughed. I loved walking out with Fulham as they are a good team. You guys at Children with Cancer UK are doing a great job raising money to help children like me and thank you for making me feel special. The players were really nice as they all spoke to him and said hello and “ even though they were so busy.
Blue, 9th February 2019

Remission

Blue is in remission, he has an issue with his kidneys where they are very small, but they are growing now so the doctors aren’t too worried. He has just had his heart echo which is now perfectly normal, having had a problem from the treatment (chemo) in the past. Unfortunately he has had some trauma from memories and flashbacks where he had been so ill but he is seeing a physiologist who is helping him overcome these. It’s very common in these children, where so far down the line something triggers them to retract back to when they were so poorly. Blue was very scared and emotional as he kept thinking it was going to come back and he would die like so many of his friend. He has also taken up boxing and mixed martial arts to combat his fears and strengthen his muscle wastage affected by his recovery. It’s a long old road.
Francesca, Blue’s mum, 11th February 2019

A child with cancer is not alone

Blue has also been part of our #AChildWithCancerIsNotAlone video campaign for Childhood Cancer Awareness Month. Childhood cancer affects not only the child diagnosed but the entire community around that child.

We would like to thank Blue, his mum, his consultant, his relatives and family friends for kindly illustrating the broader impact of childhood cancer.

are placed into hospitals for children and adults with cancer to ring after their gruelling treatment.

Update: April 2020

Blue is currently in isolation again due to the coronavirus (COVID-19) pandemic. He is on the government shielding list as he is deemed high risk due to ongoing issues with his kidneys and his lungs. He’s handling it so much better this time and is more aware why this is happening, as he’s much older now.

We cannot take the risk of him even going for a short walk. We are so grateful for the garden this time – at least we are not stuck in one room with only a window which we were not allowed to open when Blue was receiving treatment.

Blue has been keeping himself busy by baking and painting the garden furniture.

Update: August 2022

We are now in 2022 and it has been 10 years since Blue received his life saving Bone marrow Transplant in May 2012. This moment for us is so surreal as it means in medical terms he is well and truly “cured” if that is a word we can use after his horrendous and at times “uncertain” journey. He is very well in himself, a healthy, happy teenager ( he is 13 – can you believe it) who now has his whole life ahead of him. One that we at times thought we would never hope to see. His liver and kidneys have now totally recovered and he has been discharged from The renal consultant. We are yet to have a follow up at hospital to see how his lungs are functioning. They were quite low at 63% and 67% but we are hopeful as he has now been taken off his inhalers. He has hit the “teenager” stage without any medical intervention, yet this time six months ago they felt he would need growth hormone treatment, but he is doing that all by himself now.

Blue is now in the army cadets and has manged to pass his basic training in less than four months. We are all so proud and he was attending Scouts but has recently given it up to attend Army cadets full time. His dream is to be a Royal Marine Commando and he has thrown himself to achieving this by the time he reaches 18. He is doing very well at school and achieving assessment grades of 5-6 in Year 8. He goes into Year 9 in September 2022. His grades are all Merit passes with a distinction in Geography. We did some research into his eligibility for The Royal marines given his medical history but this all looks really good and I quote from their careers Website: “Most Cancers are considered to place an applicant below the medical entry standard. Exceptions: some cancers in childhood or early adult life that have been successfully treated and are regarded as cured”. So for him this is great to hear.
Francesca, Blue’s mum, August 2022

Update: August 2022

I am so proud of what “my little man has achieved” through his sheer determination not letting the big C affect his life and I know he will achieve what he wants from life. The fear in me as a parent never goes away and every little bruise or nose bleeds frightens the life out of me but I also realise I cannot let this rule our lives.

I will as a parent never forget the people who helped save his life and I will be forever in their debt. His bone marrow donor, the medical staff, but never forgetting charities like Children with Cancer UK whose ongoing determination to raise funds into research are second to none and lastly but not least the incredible people who raise money to help them succeed. From the bottom of my heart thank you.
Francesca, Blue’s mum, August 2022

Update: November 2023

He’s now 14 nearly 15 and very hormonal but he is so focused and knows what he wants to do with his life. Now in year 10 … not bad for a little man who they said wouldn’t reach three years old. He is studying Geography, Spanish and Engineering as he wants to join the Army.

He is a carded boxer and goes to the gym frequently to help his lungs and kidneys build up (bone marrow transplant complications but as Blue says; “My past will not define my future. I have stepped away from my charity stuff, it’s not because I don’t want to do it mum, I need to look past it and get on with my life. I’m sure you all understand that.”

Francesca, Blue’s Mum, November 2023

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