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Ben's story

Ben was diagnosed with acute lymphoblastic leukaemia (ALL) in March 2007 when he was seven years old. Ben’s mum, Anita, tells us the story of his diagnosis and of Ben’s inspirational bravery:

The doctor sent Ben for some blood tests

Ben had been unwell with a slight chest and throat infection and had been on antibiotics for about a week. But he just didn’t really pick up.

He’d been to school on the Wednesday but seemed so tired at the end of the day. So just to be on the safe side, his dad took him back to the doctors the next morning, convinced it was a virus that just wouldn’t go away.

The doctor was a little concerned about an enlarged spleen and the fact that the antibiotics hadn’t worked. Ben was also a slightly strange colour. The doctor decided to send Ben for some blood tests. He wanted him to go straight to the hospital and we later found out the request was urgent.

By 2pm I had a phone call at work to be told Ben had leukaemia. I immediately asked my doctor what we needed to do and the reply was: “Get home, get bags packed and get to the hospital”. Not our local hospital but a specialist unit an hour away from us – the longest car journey of my life!

It was truly the most frightening day of my life. To have a normal seven year old child attending school one day, only to be diagnosed with a life-threatening illness another, is just surreal.

By that evening Ben was hooked to a drip and at midnight had his first blood transfusion. The next day he had a lumbar puncture and the following day started chemotherapy.

Ben was 95% full of leukaemia cells

Because the treatment started so quickly, we knew it was serious. Later tests revealed that Ben was 95% full of leukaemia cells and was also slow to respond to treatment. This combination means that Ben is given the highest level of treatment. A full year of intensive chemotherapy which will be followed by two years of maintenance chemo.

Ben has been amazing throughout and a true inspiration to us all. Ben’s made many friends in hospital and has even helped the other children when they have to go through procedures he’s already experienced. He’s made many friends in hospital and has even helped the other children when they have to go through procedures he’s already experienced

There have been some scares along the way. When Ben became very ill with a stomach complication and was in serious pain for many days, I thought we might lose him. I didn’t think his little body could continue coping with so much pain. But in true Ben style he came through the other side.

He’s also been hospitalised three or four times with viruses and line infections. But other than that he copes well with the treatment, is rarely sick and is at present attending school full-time on non-treatment days!

We still have such a long way to go and life is often stressful and exhausting. His two sisters Lucy (six) and Zoe (three) cope fantastically with our far from normal family life. Now we’ve reached the maintenance blocks of chemo it’s time to keep fingers and toes crossed as Ben has a high risk of relapse. We just hope and pray it won’t come back!

Drumming marathon

In December 2012, Ben organised a drum marathon to raise life-saving funds for Children with Cancer UK. Ben, now 13, said: “Me and my friend Greg both really like drumming. I was just sitting in a rehearsal and just suddenly came up with the idea.

“Throughout my three years of treatment I had continuous support from charities – one of which was Children with Cancer UK. My past has inspired me and my friend Greg to do something to repay the charity for what they’ve done for me.”

Ben and Greg have so far raised over £1,000.

Update: October 2018

I am now well and am studying music at the Royal Birmingham Conservatoire. Having not been the slimmest and fittest of people, I have also started to take more care of what I eat and have started running. I have enjoyed running so much that I decided to train for the London Marathon. While I was unwell my dad, aunt and uncle all ran the marathon to raise money for Children with Leukaemia (now Children with Cancer UK). And now it’s my turn. I hope to help raise money for a charity very close to my heart. It’s my turn to give something back and to help fund vital specialist research to help save the lives of other children with cancer. I have already completed the Leicester half marathon on 14th October 2018 in order to help train for the marathon. I ran it in 2 hours 3 minutes….in the pouring rain!