Your Wellness

‘We were told he had leukaemia . . . I became his full-time nurse, carer, counsellor, you name it’

Louisa McEleney went into ‘fight mode’ upon hearing her son Alex’s diagnosis. Seven years later, he is still undergoing treatment but getting on with his life

The McEleney family outside Daisy Lodge, a venue that provides families with a safe, restorative space where they can focus on spending time together, outside of the world of cancer.

Arlene Harris's face
Arlene Harris
Thu Mar 21 2024 - 06:01

Alex McEleney was a healthy, active and busy boy when, in 2017, bruises began to appear on his legs. For a sporty child, this wasn’t unusual, but they were in abundance and, over the course of a few weeks, showed no sign of clearing up.

That summer, while he and his family were on holiday in Spain, his mother Louisa noticed that not only was the bruising not getting any better, but it seemed to be getting worse. So, when they returned to Ireland, she booked an appointment for the 11-year-old to see his GP, who although thought he seemed fine, suggested taking him to hospital to have a blood test taken.

Although, there was no urgency attached to the referral, maternal instinct saw Louisa taking him the next day – and after bloods were taken, she was informed they would hear back within seven to 10 days.

They got a call an hour later.

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Alex McEleney with his dad and mum.

“We were told he had leukaemia,” she says. “I was shaking all over, but immediately went into fight mode. They told us that the treatment would take 3½ years, but it had a very high success rate, so that was good. But what followed was a really difficult summer because treatment was very extreme. Alex lost a lot of weight and his hair. I became his full-time nurse, carer, counsellor, you name it. It was very hard, but we got through the first nine months of very heavy treatment thanks to the support of friends and family, who were all amazing.

“He then started on maintenance treatment for 2½ years, with monthly hospital visits which included a week of steroids [each month] which he found very difficult. But, in October 2020, it was over and he was able to ring the bell and be discharged, we were elated. We were so grateful that it was all over and delighted he would be well forevermore.”

Unfortunately, this was not the end of Alex’s cancer journey and, just 12 weeks after being given the all-clear, he began to experience another set of symptoms.

“After having cancer, he was very fearful and always looking for lumps and bumps, but one day he told me that he had a rash on his face,” says the mother of three – Alex (now 17), Ava (15) and Lauren (19). “We were told it was the type of rash which leukaemia patients can get and although it can occur for other reasons, we just knew. The next day, we went to the hospital and one of the nurses came out to take blood and said it didn’t look good – to say we were devastated was an understatement. They told us to enjoy the weekend and come back in on Sunday to start treatment again on the Monday.

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“My husband asked what the plan was and they said a bone-marrow transplant. If that didn’t work, it was CAR T-cell therapy. If that didn’t work, it was the end of the line. It was real devastation and, although we had been strong for such a long time, we all felt very weak at that point.”

Having survived his first gruelling ordeal, going back for a second time was very difficult – but there was no time to waste and Alex was put on chemotherapy straight away, followed by radiation and then he underwent a bone-marrow transplant, which required a five-week stint in isolation afterwards.

Despite the challenges he faced, the young boy was home three weeks later and dedicated his energies to getting better.

“Alex took control of his diet and exercise and was determined to get as fit as possible before the transplant, and I think that is why it went so well,” says Louisa, a former special education teacher. “The transplant was completely successful and, although neither of his sisters were a match, they got a brilliant donor from a lady in Germany who gifted him her bone marrow. He spent the rest of the summer trying to get better, as obviously his immune system was on the floor and we were in and out of hospital two or three times a week.

Alex McEleney with his family

“So, things seemed to be going well, but close to Christmas, a lumbar puncture showed up a spark of a leukaemia cell. We could not believe it – how could this have happened, he couldn’t go through this again. The transplant hadn’t worked.”

At this point, the family was in despair as they had been dealing with cancer for five years. But in March 2022, he underwent CAR T-cell therapy (a treatment where a patient’s T-cells – a type of immune cell – are changed in a lab in order to bind to cancer cells and kill them).

Thankfully, this worked very well and although he is still undergoing treatment and on a lot of medication, he is doing really well, is mentally very strong, is back at school and getting on with his life.

But getting to this stage has not been easy, as Alex faced one blow after another for the past seven years. Indeed, coping with a cancer diagnosis, for anyone, at any age, can be extremely difficult, but when it affects a child, everything seems much harder – not just for the child, but for the whole family.

Every month across the island of Ireland, approximately 40 young people (aged between 0-24) are diagnosed with cancer. Cancer Fund for Children (CFFC) supports more than 1,500 youngsters and delivers therapeutic short breaks at a purpose-built facility, Daisy Lodge, in Newcastle, Co Down. The venue provides families with a safe, restorative space where they can focus on spending time together, outside of the world of cancer, and CFFC is building a second facility on the shores of Lough Corrib, in Cong, Co Mayo.

To help raise funds, CFFC is hosting a “Bog Run” (see cancerfundforchildren.com) at Lough Boora Discovery Park, Co Offaly, on Sunday, March 24th. Participants can choose between a 5k or 10k event (open to those aged 12 and above) or sign up with their family to tackle the junior 5k course (open to those aged eight to 14 with an accompanying adult). The event will be the ninth annual Bog Run for CFFC (last year it was held at Castlewellan Forest Park in Co Down).

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“I went twice during the first 3½ years of treatment and it was amazing,” says Alex, talking about Daisy Lodge. “Obviously, I was too at risk to go on holiday and was so weak that I couldn’t even do anything even if I had the energy – but once we went to Daisy Lodge, it was unreal. I can’t explain it, but when you’re going through a really hard time, it’s like there are angels watching over you and caring for you – it’s incredible.

“I think people should do the Bog Run because a charity supporting children going through cancer has to be the best cause to put money or energy into – it really does help and a lot of kids get side effects after treatment and going to Daisy Lodge really helps. So if you have the ability to take part and your legs work, think about the kids who can’t do it and the ones you are doing it for. It will be an amazing day and you’ll be missing out if you don’t go.

“Think about all the kids who are suffering and the run will feel a lot easier. I wish I was doing it myself – hopefully one day.”

Cancer