Earlier this year, Sam’s dad was diagnosed with acute myeloid leukaemia – and was eventually told that he’d need a stem cell transplant.
In this blog, Sam talks about how his family has come together in mutual support through a difficult time, and his own experiences of signing up to the Anthony Nolan register.
Dad’s leukaemia diagnosis
It all happened by accident; Dad was having some blood tests for a review of his epilepsy medication, and the doctors discovered that his white blood cell counts were worryingly low.
He’d experienced some dizziness, and funny vision, but he’d assumed the same thing as the doctors – that it was all a result of the adjustments in his epilepsy pills, which were in need of changing.
They tested out a few different pills, but his condition didn’t improve. And that was when they carried out a bone marrow biopsy, in July 2015, and discovered that Dad had acute myeloid leukaemia.
I’m a dancer – and when I got the news, I was rehearsing for upcoming shows for a cruise line in Florida.
Dad (as Dads do) gave me strict instructions that I wasn’t to drop everything and come home. But after a very sleepless night, I realised that I just wouldn’t be able to stay out there and be focused on rehearsals while everything was happening back at home.
I quit the job. Everyone at work was very supportive, but it was clearly explained to me that due to company policy and not knowing how long I’d need to take off, I’d not be able to return – no rehires allowed. I didn’t give it a second thought. I needed to come home and look after my Dad (and look after Mum, who’d also need to be looking after Dad and making sure my sister was OK!)
That night, I hopped on a flight back to the UK. I didn’t tell my parents I’d done it; I didn’t want them to worry about me, or try and persuade me not to come. But as soon as I arrived at the front door and saw the relief on Mum’s face, I knew I’d done the right thing.
The next day, Dad started his first round of chemotherapy, and a few weeks later I started working on the Box Office at my local theatre.
Dad’s stem cell transplant
The chemo didn’t make him feel great, and the constant monitoring was a huge strain for him, but it seemed to go relatively smoothly, with few significant side effects. The second round was much worse, with a very painful infection.
Meanwhile, after the second round of chemo, the doctors had agreed that he should have a stem cell transplant to treat his leukaemia.
The transplant happened last week; Dad’s now in isolation, feeling quite rubbish. He’s doing OK, just down in the dumps. Mum and I are travelling 90 minutes to visit him as often as we can – it’s hard on the fuel gauge, but it’s worth it, just to keep Dad company, even if he isn’t in the mood for talking.
We’ve also set him up with a wi-fi hotspot, which means he can keep up with Strictly Come Dancing on his iPad, play games, and keep in touch with family and friends while he’s in isolation.
There’ve been lots of really supportive messages from across the world, from the USA to Australia; Mum and Dad used to come on cruises with me, and they were surrogate parents to everyone onboard!
That’s by far the biggest support we’ve been able to give him – the knowledge that he’s not alone, even if he sometimes feels that way. There’s only so much he can talk about, stuck in a room on a hospital ward, but it’s fantastic that he can just pick up his iPad and chat whenever he’s in the mood.
At the end of Dad’s second round of chemo, right before Dad went into hospital for the transplant, my Nan passed away, at the age of 97 – we think it was undiagnosed myelodysplastic syndrome (MDS). That was incredibly tough, on top of everything he was going through, but it did give him a chance to see family members, who were all concerned with how he was doing.
Why I signed up to be a stem cell donor
I already knew that I wanted to sign up to the Anthony Nolan register, but I was really surprised and delighted with the response from the people around me; my boyfriend registered to be a donor too, along with six or seven friends. More continue to tell me they’ve signed up!
I wouldn’t have signed up if Dad hadn’t needed a stem cell transplant; I just didn’t realise the full potential of what it can do. But it really isn’t a big deal, and it can do so much for the people out there in hospital who haven’t found a matching donor. I’d donate over, and over, and over, if it can help someone!
I’m also organising a charity concert for Anthony Nolan for next May, Anthony Nolan LIVE, to raise funds for the charity’s work. It’ll be a variety performance of singing and dancing, and I’ve called upon some friends and staff to help out – I’m hoping to raise £1000s for Anthony Nolan and hopefully get some people signed up to the register, too.
Tickets will be available at the start of next year, so if you’re interested (or you’d just like to get involved or have some ideas on how you can help!), get in touch!
For transplant recipients and their families
To anyone else who’s going through the same thing, I’d just say this: if you’re supporting somebody who’s going through a transplant, they might not always be in a great mood, and that can be difficult to deal with that when all you’re trying to do is support them. But you just need to be patient and remember why you’re there.
Even if you don’t feel like you have anything to bring, you’re still being there for them – and that’s incredibly useful.
And if you’re struggling, there are other people out there who can help you. Just reach out when you need it, and don’t feel like you’ll be a burden. There is so much love for you.
If you’re interested in getting involved with Anthony Nolan Live, or you’d like to know more about ticket availability, email Sam at firstname.lastname@example.org.
If you’re interested in signing up to be a stem cell donor, click the button below.
If you’re a patient or family member, you can join our Transplant Community to speak with other people who have experience of transplants.