Laois father of child with leukaemia abseils Croke Park for charity

Abbeyleix man Steven Reilly and his wife Laura have two children, Jude aged three, and Florence who is nine months old.

In June of 2023, while Laura was nine weeks pregnant with Florence, the couple were given the devastating news that Jude has B- Cell acute lymphoblastic leukaemia.

Mr Reilly, who teaches at a primary school in Dublin, has teamed up with his co-workers John and Brendan to abseil down Croke Park. This abseiling challenge is in aid of Childhood Cancer Ireland.

"September is Childhood Cancer Awareness month. I want to help return the favour by fundraising so that Childhood Cancer Ireland can continue to support children and families battling cancer," Mr Reilly said.

Pictured: Laura and Jude Reilly

"I am abseiling Croke Park on the 28th September 2024 with two of my friends and colleagues, Brendan and John, in support of Childhood Cancer Ireland. If you can spare anything, we would appreciate your support on our donation page.

"We witnessed first hand the importance of Childhood Cancer Ireland on St. John's Ward and hopefully this can continue into the future. It cannot happen without the generous donations given by people like me and you," he said. 

Mr Reilly explained that when Jude was two, he went from being a textbook hyperactive toddler, to being so weak that he had to be carried.

"Back then we hadn't a clue, he couldn't verbalise it," Mr Reilly explained.

"I remember the night before we brought him into A&E, there were two boys a bit younger than him, flying around chasing after bubbles. Jude couldn't, that's when we knew something was wrong.

"We went into A&E and the triage nurse checked his vitals, and suddenly he was sent for a chest x-ray though nothing was wrong with his lungs- this was a red flag for us straight away," Mr Reilly said.

Pictured: Jude at Crumlin Children's Hospital

"Within two hours were given a private room on the ward, and a nurse told us that a consultant was coming down to see us.

We googled the consultants name and it said children's oncology, that's how we found out. It was just horrific," Mr Reilly said.

The couple were told the next morning that it was 99% likely that Jude had leukaemia. The family spent the next twelve days in Crumlin, with Jude undergoing multiple transfusions.

"The day that Jude started his first dose of chemo was the day my grandmother was buried," Mr Reilly said.

"We hoped to be able to attend the funeral, but we couldn't. We had to wait for the chemo to come. After that day, we spent about forty nights in total at the hospital," he said.

With Laura pregnant, the couple had to schedule her appointments at Holles St. Maternity hospital around Jude's chemotherapy appointments at Crumlin.

Pictured: Big brother Jude with baby Florence.

"For chemo appointments, you have to wait around an hour for a bed, and then three or four hours for the chemo to go in," Mr Reilly said.

"Laura was induced early because we were afraid she could go into labour at home on her own, while I was in Crumlin with Jude. Florence was born on December 20, and that same day Jude was called for another blood transfusion," he said.

After eight long months of aggressive treatment, the couple were told that Jude's treatment was working. Now fifteen months on from his diagnosis, Jude continues his treatment. Though experiencing side effects from the medication, Jude is doing much better.

"It's not too intense now, but it hits me more when I walk into the ward and see kids and tiny babies undergoing chemotherapy," He said.

"Jude is doing great, he has had a really good week this week. Last week was tough, people don't realise the horrific side effects that come with the treatments. It kills the cancer cells, but it's not easy. 

"We’ve had plenty of tough days but nothing like the first 9 months thankfully. Jude has started soccer stars, rugby tots and gymnastics and last week he started going to creche for 3 hours a day. He almost has a normal life again," Mr Reilly said.

"I never thought I’d be able to say that. He is in ECCE for 3 hours a day, he has a helper in the classroom assigned to him. He needs it, he has a lot of trust issues with adults, especially women. He’s used to seeing nurses come up to him smiling to
gain his trust, then they stick him with a needle or change his dressings or change his NG.

"He absolutely hates when people smile or be nice to him. We go in for a heavy treatment once a month. It’s a tough 8 or 9 days after that, then he starts to come back to himself," he said.

"We recently attended a walk for remembrance through Childhood Cancer Ireland. It was a very emotional day- I saw kids I remember on the ward with their hair growing back, running around with the other kids, but there were an equal amount of parents holding pictures in memory of their children. It's so, so tough," Mr Reilly said.

Mr Reilly first became involved with Childhood Cancer Ireland when he was invited to do a podcast with the group.

"The group does a podcast with parents of children with cancer, they're a very tough listen," he explained.

Pictured: Jude undergoing chemotherapy.

"I did the episode with them and heard about their abseiling charity fundraiser. I signed myself up, and they were short a few bodies. I said it to my coworkers Brendan and John, and they were happy to come along," He said.

"Only for my mother, Laura and I wouldn't have gotten through it," Mr Reilly said.

"Laura had a high risk pregnancy, and couldn't always go into the hospital. My mother would bring Jude to appointments and help however she could."

Mr Reilly explained that as a primary school teacher, he had given grinds to children with leukaemia who were too sick to go to school. 

"I really was so ignorant, I thought I would be prepared for the reality of the illness but I really wasn't," he said.

"When you're in the hospital, you're in the same room for twelve hours. There are very, very sick children, and tiny babies undergoing treatment, who will never have the same lives again.

"The highlight of your day is going to the little kitchen to make a cup of tea, just for a change of scenery. You're in there worrying if the treatment will work, if this is how life is going to be for you and your child.

"If you don't know what it's like to sit in Crumlin, you're very, very lucky," he said.

Pictured: Jude helping to feed baby sister Florence.

Mr Reilly explained that there were parents on his ward who had been in the hospital for the better part of a year, living this horrendous experience.

Mr Reilly said that he and Laura also give Jude chemo at home, through a tube into his chest.

He explained the reality of an average day as a parent with a child with cancer, in the hopes of raising awareness.

Here is Jude's pain management and medication schedule, undertaken by Mr and Mrs Reilly daily:

• Wake up:
  5ml of Septrin and 10ml flush
• Attach him to a liquid feed which could take 90 mins attached to the pump, flush with water
• Anti – sickness medication ( ondansetron) to build up tolerance before his chemo
• 10ml of Lactulose for constipation and 10 ml flush, a side of effect of other medication.
• Attach to pump for hydration with a sachet of different laxative, which could take 40 mins
• Prepare for cytarabine chemotherapy which is administered through Hickman Catheter in Jude’s chest. Preparation would take up 30 mins to sterilise the area
• set up the syringes for checking the line, flushing and unpacking the chemo syringe and making sure not to touch anything.
• He would then get a different anti sickness medicine called “cyclizine”, which must be broken, crushed and mixed with water and give through NG tube and flushed with 10ml of water.
• Time again for another liquid feed, could take up to 90 minutes.
• Onadsetron anti sickness again and 10ml flush.
• 5ml of Septrin and 10ml flush.
• Senekot and flush to help with constipation.
• There was often a morphine dose in the middle of that, if he was in pain.

"I’m trying to get as much exposure for the fundraiser as possible for CCI, they are a great charity, one of many great charities in Crumlin hospital," Mr Reilly said.

"I’m just trying to do my bit to help. I know the struggle that families have to go through. We knew there was a tough road ahead but it was far more challenging than we could have ever imagined.

Pictured: Mam Laura and Jude.

"And the scary thing is, we had no major setbacks. We had plenty of minor ones, which weren’t easy but it was nothing that affected his long term prognosis," he said.

"We were hanging on by a thread for months on end, physically, emotionally and psychologically. And there are children with far more severe diagnosis than Jude got. After about 2 month of being on the ward, we realised that we were the lucky ones.

"We had a good prognosis and a highly treatable form of cancer. Jude went through hell on a daily basis, it killed us to watch him suffer but knowing it was working, made it so much easier," Mr Reilly said.

"People look at us in disbelief when we say we’re very lucky, but if you spend a day on St. John’s ward and see what some babies, toddlers, children and teenagers are going through, you’d know all about it," he said.

"You’d never complain about anything ever again. Some people watch their children suffer for months and years on end with the knowledge that the treatment isn’t going to work. That’s where CCI come in, they fill in the gaps. They help keep parents going both during and after treatment.

"It's the third charity event I’ve been involved with since Jude got sick. We have been humbled by the generosity shown to us by family, friends, acquaintances and complete strangers. If people want to donate, that’s great, your money will help someone who really needs it.

Pictured: Steven, Brendan and John will undertake the abseiling challenge in aid of Childhood Cancer Ireland.

"I also don’t want people to feel pressured to give 40 or 50 euro. If a quarter of the people who see this give a five euro donation, we will raise a load of money. There is nothing anyone can do to help, but giving a charity the resources to help is something we can do," Mr Reilly finished.

Those who wish to donate can do so here.