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Finding a mixed-race stem cell donor for Dad simply wasn't an option

19th Apr 2021

Ben tells the story of his Dad John's blood cancer diagnosis, and how the responsibility of becoming a stem-cell donor fell on his shoulders, despite only being a 50% match.

Ben and his father (who has AML) stand on stage with a band, Ben is holding a microphone whilst his dad plays electric guitar.

Ben playing music with his Dad, John

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It was around mid-June that we knew something was wrong.

Dad was tired, constantly. He'd get out of breath from mild physical exertion, despite being a frequent tennis player.

I got a phone call from him a few weeks later.

You know your family members' mannerisms, so I knew something was wrong immediately.

I'd mentally prepared myself for him to say that the illness was more serious than we'd thought.

I was absolutely not prepared for him to say that he had been diagnosed with acute myeloid leukaemia.

It's hard to find words for how I felt. I'm not a very emotional person normally, but I was devastated. I held it together for the rest of the phone call and then broke down for half an hour.

At the time I thought blood cancer was more or less a death sentence

I was overjoyed to find out that it wasn't the case after doing some reading online and seeing how much the science has progressed, even in the last few years.

The months following are blurry, but I think we all just developed coping strategies and waited.

My stepmum started doing some running events to fundraise for Blood Cancer UK. I threw myself into work and some time-consuming hobbies. I just wanted to get through the months as fast as possible, to get to the end of it all, so that the constant worrying could stop.

I think that's been the hardest part of this for me – knowing that there's nothing to do except wait, and nothing we can do to tilt the scales in his favour.

My dad needed a stem cell transplant

I remember thinking that it was a possibility that I'd need to donate, and that I'd do it without a second thought. I think anyone would in order to help a family member.

Having donated the stem cells, I feel a little sad, actually.

Not sad that I'd done it, but that I needed to do it at all.

A split image, Ben sits in a hospital chair, donating stem cells via a catheter in his arm. His dad also sits in a hospital chair, smiling whilst receiving blood from a machine.

Ben donating stem cells, and his Dad receiving them

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The thing is, I'm not the best possible donor for my dad.

As his son, I'm only a 50% match. In order to be a 100% match, the donor would need to be the same percentage mix of races as my dad, but there’s a massive shortage of mixed-race donors.

So I'm sad that there wasn't a better match anywhere on the donor registry.

Sad because I think almost anyone would donate without hesitation or second thought to a family member, but so few people have signed up to do the same for a stranger if needed.

I think it's probably just a lack of awareness. Before my dad's diagnosis I knew nothing about blood cancer, or stem cells, or any of this. That's why I feel like this is worth writing really – and why I'll try and volunteer or help raise awareness after this is all done.

I’m not looking for any sympathy

My hope isn't that anyone will read this and feel sorry for my dad or his family, but that they might stop and think about the reality of blood cancer.

That it can come out of nowhere and affect anyone, and that one day they might rely on the kindness of a stranger donating stem cells to save themselves or someone they love.

I'm hoping someone might read this and sign up to be on the donor registry, particularly if they're mixed-race.

A split image, on the left Ben and his family sit on a sailing boat with his family smiling with the sea behind them. On the right it shows Ben and his father smiling in the garden with other family.

Ben with his family

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As for future plans, my dad is stubborn and has already come back from the brink of death once, so I'm not worrying as much anymore.

Mostly I'm planning for when he's recovered. Between playing music, sailing, and skiing together, we have a lot to look forward to.

Ben sits in a hospital chair donating stem cells via a catheter in his arm.

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