Claire’s London Marathon story: mum takes on virtual marathon challenge to give something back

This Sunday’s London Marathon has been replaced with The 40th Race – a virtual version of event, and we have hundreds of runners taking on the 26.2mile challenge for CLIC Sargent. One of those runners is Claire – her family have been supported by CLIC Sargent since 2006 when her son Lewis was first diagnosed with leukaemia, he was two and a half years old. After Lewis relapsed in March this year for the second time, they travelled from their home in Glasgow to Newcastle for CAR T-cell therapy. She’s never done a marathon before, but wanted to take herself outside of her comfort zone and to give something back. Here, Claire shares their story:

Lewis was first diagnosed with leukaemia in March 2006, he was about two and a half years old. He had a rash for a few weeks all over his body, and I kept taking him to the doctors and I got told it was just a viral infection. Lewis has Downs Syndrome and his milestones are all delayed, so he was only just starting to walk at this point, but anytime he tried to weight-bare he would be in pain, so I knew something wasn’t right. Instead of taking him back to the doctor I took him straight to A&E, and it took off from there. It was a real shock when he was diagnosed.

He had the standard three years of chemotherapy. He didn’t cope great. Because if having Downs Syndrome it made things more complicated as they couldn’t give him the higher doses and he reacted more to things, and he got more infections because he’s got a poorer immune system. But he did the full course of treatment and went into remission. After three years of treatment he was fine.

Lewis was six years in remission, but in 2015, when he was 12 years old, he relapsed. Lewis relapsing was something that was always in the back of my mind. You’re always looking for something, if he had a cold or was a wee bit pale I’d always think ‘oh is it back’.  I’m a nurse, and sometimes a bit of medical knowledge is a bad thing! Lewis had the same treatment as the first time, he might have had slightly different drugs but it was three years again. It was a long time.

He was just coming up to the two year all-clear mark when he relapsed for a third time. He was diagnosed again in March this year, he was 16 years old by this point. It was horrible but Lewis takes everything in his stride. He doesn’t fully understand to the extent of what leukaemia is because of having Downs Syndrome, but he knows he’s not well and he knows he gets is medicine.  He’s used to everything and just goes with the flow. He doesn’t seem as stressed out as the rest of us are, which is a good thing.

Because it had come back a third time and he had relapsed even sooner this time, they said the chemotherapy wasn’t working and that he’d previously had too much of it for his body. So basically they first said there were very little options. I had attended a talk about Car-T Cell Therapy given by Lewis’s consultant a few years previous, so I asked about that. They took his case to the UK meeting that they have, and they agreed to put Lewis on it. We live in Glasgow and that’s where Lewis had treatment the first two times, but they don’t do it on children in Scotland so that’s why we went down to Newcastle for the treatment.

We thought we didn’t have a plan b, so the relief when they came back and said he could have it was huge. Originally we were told that they could try different drugs to get him and keep him in remission for as long as possible, but ultimately they felt it would return, so we should make the most of the time we have just now. So to be told he had been accepted was amazing. We were in hospital for ten weeks initially, and we waited for about four to six week until we got the news.

Being in hospital this time was so different to the previous times because of Covid. There could only be person in with Lewis, and because my husband is a Charge Nurse and he was up in ICU treating with Covid patients, we’d made the decision that he couldn’t be around Lewis. That was hard, because we have two other kids as well, and obviously grandparents were isolating.

Me and my friend then went down to Newcastle with Lewis for the CAR T-cell therapy. The family weren’t allowed to come down and visit us or anything. I thought it was going to be worse than it was, but Lewis pretty much sailed through it. I still watch him every day waiting for something, but he did really well! We were in Newcastle for five and a half weeks. It was hard going being away from everyone, but we’re out the other side now so it’s good.

CLIC Sargent support

All the way through from the first time Lewis was diagnosed we’ve been supported by the same CLIC Sargent Social Worker, Julie. She’s been fantastic. She’s been there from when Lewis was a baby so it’s been good continuity. The first time she initially helped with things like the disability living allowance as I didn’t really know much about that, and the next times Lewis was ill, it was more around getting help with things like petrol vouchers for our hospital trips, and letting us know about anything else we were entitled to.

Julie also arranged for our other two children to get involved in a couple of the sibling days, they were taken out to the cinema, bowling, and things like that, which was great because the kids loved it. It was a wee treat for them because everything’s always around Lewis.

Julie’s always just there, if we need anything we can get in touch. It’s just knowing there’s someone there. She’s been absolutely fantastic.

The London Marathon

I’ve never done a marathon before. I’ve done quite a few charity things, just to give back to the charities that have given to us, and I always like to do things that are right out of my comfort zone. I’m not a huge fan of running, I don’t enjoy it, so I thought right, I’ll do a marathon.  I was signed up to run the London Marathon in 2020 and training for it when Lewis was re-diagnosed in March.

For Sunday I don’t have a route planned. I’m doing it with my friend Thomas who came down to Newcastle with Lewis and I, and he’s actually my boxing coach, so he’s done all of my training with me.

I am planning on running the marathon next year, but still waiting to see if I’m allocated my place in next year’s marathon or 2022. My dad was a runner, he’s done marathons and he’s always wanted to do London, but never had. So he was really chuffed for me when I got my place. He’s been giving me loads of advice, and he and my mum were going to come down with Lewis to watch me. I used to watch it every year and even though you can’t run, you just want to do it one day. When I got my place I was so chuffed, it’s such a huge thing, and I’m definitely geared up to do it next year. All going well Lewis my family will be there too.

To sponsor Claire’s London Marathon effort go to www.justgiving.com/fundraising/Claire-Maguire7