Abbeyleix native Steven Reilly remembers all too well the trauma of his son Jude’s diagnosis with Acute lymphoblastic leukemia.
“It was June 10 last. I don’t think you get over it. The diagnosis just burned in my head. In a second, your life is changed,” he said.
Jude who was only two-years-and-two-months when he was diagnosed, is now enjoying life with his family at home.
“He is in the maintenance phase of treatment. He is doing good. He still has about ten months of treatment to complete,” said Steven.
Steven, who hurls with Abbeyleix, is a primary school teacher who is married to secondary school teacher, Laura, with one other child, eight-month-old Florence.
Steven is sharing Jude’s story in a bid to raise awareness of a fundraiser he is doing – an abseil off Croke Park on September 28 – along with two colleagues – for Childhood Cancer Ireland (CCI.)
“This is a charity set up by parents of children who have had different forms of cancer.
“They provide a lot of support through peer mentoring, play therapy and music therapy on the ward. We are grateful for the endless opportunities they have given us,” Steven said.
“I’m just trying to do my bit to help during September, Childhood Cancer Awareness Month. I know the struggle that families have to go through.
“On June 10, we knew there was a tough road ahead but it was far more challenging than we could have ever imagined. And the scary thing is, we had no major setbacks,” he said.
“We had plenty of minor ones which weren’t easy but nothing that affected Jude’s longterm prognosis.
“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 two months 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,” said Steven.
“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. 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.”
Looking back, Jude was a child you couldn’t pin down, Steven said. “He went from that to being carried and oversleeping,” he recalled.
With his condition worsening, they brought him to A&E at Children’s Hospital Ireland (CHI) at. Crumlin and alarm bells quickly started to ring.
“We were brought into a private room and we knew then we were in big trouble. A blood test showed that his white blood cells were very high.
“We were lucky in that this type of leukaemia is probably the most treatable. It was a four to five year plan for all.
“A new protocol came in last May just before Jude was diagnosed, which has reduced the length of the treatment to just over two years for all.”
It has been a very tough road, with St John’s ward a second home.
“Jude had to be isolated for a long time as he couldn’t fight off any infection. He couldn’t mix with other children – he wasn’t well enough anyway,” said Steven.
“Jude lost all his hair twice and put on a huge amount of weight because of being on steroids.
“He ate nothing solid for four months and after the treatment changed, we had to give him batch cooked food before bed and he was constantly hungry,” said Steven.
“He stopped walking and talking because of the side effects of the chemotherapy and the steroids.”
With Jude now only required to go to Crumlin once a month, the family is enjoying a sense of normality away from the hospital.
“He’s terrified of the hospital. Anytime we go on a motorway he starts panicking, fearing that he is going to the ‘doctor’s’ as he calls it,” Steven said.
“He almost has a panic attack in the back of the car. He has a nasogastric (NG) tube up his nose but he has been able to do soccer, rugby and gymnastics when not on heavy treatment.”
Joining Steven in the fundraising Croke Park abseil will be John Sheanon, principal at the Divine Word National School, Rathfarnham, where Steven teaches, and Brendan Timmons, a teaching colleague, from Silvermines in Tipperary.
“The abseil is 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,” said Steven.
“If people want to donate, that’s great, their money will help someone who really needs it. I also don’t want people to feel pressured to give €40 or €50.
“If a quarter of the people who see this give a €5 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 all can do,” said Steven.
‘’My wife saw that they were looking for volunteers to abseil off the roof of Croke Park to fundraise and she signed me up without asking me. She then said: ‘I hope you haven’t got a match on September 28,’” he laughed.
“They were short a few volunteers so I asked Brendan and John. Both are big GAA men and both, along with the rest of the staff, have been incredibly supportive.
“We’re doing a ‘wear gold’ day in school on Friday 20 and we’re going to walk around a local park. Our goal was to get around €2000 but we’re up near €4000 now.
“There’s a leader board within the charity and we’re three people with a competitive nature, we want to top it. So, our new target is €6,000,” said Steven.
“This isn’t the first fundraiser our schools have done since Jude got sick. Laura’s school, St. Mary’s College Naas, organised a head shave. A number of staff members shaved their heads, and two female members of staff also got a short back and sides.
“The money raised was given to us and we used a chunk of the money to restock the play room and the teenagers’ room in St. John’s ward.
“We did that just before Christmas 2023, as we wanted to do something for the children who were going to be in for the Christmas period.
“As it turned out, we were in there ourselves from December 27 and we got out late enough on New Year’s Eve.
“The rest of the money is put away. We just have to plan for a rainy day. There is always the fear of a relapse and it’s a security net for us,” Steven said.
“My school also did a fundraiser back in February for a charity called Cian’s Kennels. Brendan was one of the main organisers and we raised just under €10,000. We did a 24-hour cycle in the school.
“All the school staff, a few parents, a past pupil and a few guards came down from Rathfarnham garda station to get a workout in at 3am,” he recalled.
Cian’s Kennels is a charity that allows pets to visit children who are in hospital for a prolonged period of time.
“Like everything in Crumlin hospital, if something is named after someone, there is a heartbreaking story behind it. We used the service three times on our prolonged overnight stays.
“It is located at the back of St John’s ward. It’s a brilliant service and I think it’s the only one in the world like it. Both fundraisers were planned for times when Jude wasn’t receiving heavy treatment. He really enjoyed them,” said Steven.
The Abbeyleix native took part in the Light It Up Gold walk 2024 on Saturday at Patrick’s College, Maynooth.
Steven said: “The short walk brought people together in hope and remembrance, for all those currently undergoing treatment, for survivors and for all of the children and young people who have died from cancer.”
SEE ALSO – Check out all our top stories from our 2024 Remembered series here
