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Ben's Story

Ben's mum Katrina, writes a heartfelt story on Ben's life - she says "Ben is a 24 year old young man who had ‘the best’ life.

He was living in Hemel Hempstead with two friends and working for an Advertising company in London – a job he absolutely loves. He has an amazing girlfriend and loads of friends he has known for years. He is very social and is incredibly funny and quick witted. Very close to all his family and absolutely loves the family dog Barney. Everything was great.

Then on Christmas day 2023 our world was turned upside down. He’d been having fevers, night sweats and been coughing for three weeks and two doses of antibiotics hadn’t worked. Christmas Eve he was dreadful so his girlfriend drove him to me – an hour away – and he called 111. A Doctor phoned back at 8am Christmas day and said he must go to A&E straight away.

At 2.30pm on Christmas Day we were told he had cancer and whether we had heard of Leukaemia. It is something you never expect to hear when it is related to your child. They couldn’t confirm what type it was until further tests were done. He was admitted straight away and we found out a few days later he had T-Cell ALL – Acute Lymphoblastic Leukaemia. They also said it was very rare for his age and although complicated, it was treatable.

What he then had to endure for the next 5 months was extremely tough both mentally and physically. It’s been an absolute rollercoaster for all of us. The treatment he was having was very tailored to him and we never really knew what was happening day to day. Luckily, he came out after the first 4 weeks and moved back in with me so I could care for him, along with Emma, his girlfriend at weekends. Some weeks he was at hospital having chemotherapy every day. Exhausting!

He didn’t react as quickly as they would have liked to the first phase of treatment so we were told at this point it was very likely he would need a bone marrow transplant. It was just another thing to have to deal with and very scary. In the middle of the next phase, it was confirmed he definitely needed a transplant because there was a big risk of the Leukaemia coming back and more aggressively. We met with the Oxford BMT team and they said they had a donor but could his brothers be tested? They were, but unfortunately one was a mis-match and the other only a half match but it was okay because there was a full match from Germany. We set up dates and Ben mentally prepared himself for what he knew was going to be a gruelling time.

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Then, the day before he was due to go in for the pre treatment he had a call to say they couldn’t get hold of the donor. He was absolutely devastated. A very low time for all of us. And then to be told he had to go back to Milton Keynes for maintenance chemotherapy and he would be an inpatient for 5 days was nearly the final straw for him. He is now out and recovering – he needs to be strong again to have a transplant. Unfortunately, Ben’s bone marrow type is uncommon but they are hoping to find another match soon. If he doesn’t have a transplant the Leukaemia will come back and it won’t be treatable. We are hoping that a match for him is out there somewhere."

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