Little hero Caoimhe wants to share the magic of Christmas with sick children

A FIVE-YEAR-OLD local girl wants to share the magic of Christmas with the extraordinary people who cared for her and support their heroic efforts to give every sick child every chance.

Caoimhe Cullen from Paulville, Tullow is one of seven incredible young patients from Children’s Health Ireland who have come together to design a special Christmas card collection with MoonPig. Like all the young artists, Caoimhe has experienced care at Children’s Health Ireland hospitals and is using her creativity to give back to where she was treated to help other sick children across Ireland.

Daughter of Darryl and Clare Cullen (née Minnock) and older sister to two-year-old Aoibheann and newborn brother Donnacha, Caoimhe was diagnosed with an aggressive Wilms tumour on her kidney in August 2023, just days before she was due to start primary school at Gaelscoil Eoghain Uí Thuairisc.

An extraordinarily brave Caoimhe has endured over a year of intense treatment, including surgery, radiotherapy and over eight months of chemotherapy – never failing to surprise all with her endless strength, good humour and sparkle through it all.

The greatest of all days occurred in July this year when tiny warrior Caoimhe stepped up to ring the bell at Crumlin’s oncology section, St John’s Ward, proudly declaring that she’s now cancer-free.

“From day one, the staff at Crumlin have been just incredible. The staff at St John’s Ward are angels … that’s the only way I can describe them. It’s unbelievable what they have done for us and I don’t think we could ever repay them for helping us through the really darkest of times,” Clare told The Nationalist.

“When Caoimhe was in getting her chemo, she was always playing, doing crafts or colouring – anything to keep her mind off what was happening – so I suppose they thought of her when it came to the Christmas cards, because she loves art.

“We were delighted to help in any way we can. It’s just a very small thing to do to thank them and to help families going through this. We are so grateful,” added Clare.

In the summer of 2023, Caoimhe, then four, began to complain of a sore tummy, while she’d also experienced a hoarse voice in the weeks beforehand. She attended her GP a number of times over this three- or four-week period, where the tummy pain was diagnosed as constipation and the hoarse voice a symptom of hay fever.

Caoimhe was given medication to help this ‘on and off’ tummy pain, but worryingly it was not going away.

“Constipation is very common in that age group, but it wasn’t getting better. I suppose you are trying not to be a panicky parent, but I knew something wasn’t right,” recalls Clare.

On a weekend in mid-August 2023, while getting her daughter ready for bed, Clare noticed a “huge swelling on Caoimhe’s side”.

“The swelling was very high up, so I thought constipation just doesn’t make sense. I sent a picture of it to my sister-in-law Niamh, who is a nurse, and she sent it to a number of her friends who are paediatric nurses and they advised us to go to Crumlin,” recalls Clare.

“They were telling me not to worry, but to be on the safe side go to Crumlin, that they would be able to do bloods and tell us what exactly was going on.” On Monday morning, Clare brought Caoimhe to Crumlin, concerned but utterly unprepared for what was going to happen. A series of tests were carried out and within two hours Clare received the devastating news that Caoimhe had cancer.

“You are hearing something no parent ever should, it’s just impossible to process it. You were told constipation and then you are hearing words like oncology and tumour. And then I rang Darryl … it’s very emotional even thinking about it.

“But Crumlin were just incredible and very honest and direct, which we really appreciated. The said they suspected it was a Wilms tumour on her kidney, more tests would have to be carried out, but it would probably involve surgery and treatment,” recalls Clare.

Wilms tumour is a rare kidney cancer that mainly affects children. In recent years, progress in its diagnosis and treatment has greatly improved the prognosis of this form of cancer.

Clare described those next few days as “an absolute whirlwind”, as Caoimhe underwent further tests, had a central line inserted into her chest (called a ‘Freddie’) to aid chemotherapy and intravenous medication, and underwent extensive surgery to remove the tumour.

“They told us they wouldn’t know the full extent of it until after the surgery, but from the start they were very clear that whatever happens, they had a plan and that they would deal with this, which was very reassuring,” said Clare.

“They told us ‘it is treatable and we will deal with this’ and, to be honest, all the way through myself and Darryl clung to that.

“We do feel lucky that they dealt with us so quickly straight after the surgery to remove the tumour and the kidney; chemo started immediately.” By initial scans, Caoimhe’s tumour was thought to be the size of a tennis ball. In fact, the tumour was the size of a grapefruit, severely restricting her internal organs.

There was more bad news when it was discovered that the tumour was more aggressive than initially hoped and it was categorised as an aggressive Stage 2 tumour. “This meant the chemotherapy had to be more aggressive, too, so it was eight-and-a-half months of chemo and she would also need radiotherapy,” said Clare.

The next few months were particularly grim, with Caoimhe experiencing horrendous sickness and a huge loss in appetite as the treatment took its toll. Unable to keep anything down, she lost 20% of her body weight and ultimately had to have a feeding tube inserted.

Days when she was well enough to go to school felt like enormous wins and the family clung to those small moments.

“Every time she had chemo, we’d end up in hospital with something. She was so sick, we’d always end up in Kilkenny, with her having to get a blood transfusion or having an infection … it was horrendous,” said Clare.

“We got home from hospital on Christmas Day and then we all ended up getting Covid.” Throughout it all, Caoimhe was endlessly brave, finding joy in the small things – the little days out, the days she was well enough to go to school and the many, many acts of kindness from family, friends and the wider community. A new anti-nausea drug resulted in things significantly improving at the start of 2024; Caoimhe was able to eat and was getting stronger and stronger every day.

Treatment finished in June 2024 and three weeks later the Cullens got the amazing news they’d longed for: the scans were all-clear and Caoimhe was cancer-free.

“On the fifth of July she got to ring the bell … that was an amazing day,” says an emotional Clare.

In August, Caoimhe’s Freddie was removed, a big moment for the now five-year-old, who was now able to go to the pool, participate in some summer camps and go on a family holiday.

“Just to be able to be normal, to do the normal things was amazing,” said Clare.

Being part of this Christmas card appeal has been so important to the family. “As a parent, you are just so worried and trying not to panic, trying to cope with the worst news imaginable, but the staff at Crumlin are just incredible; day or night they were there for us.

“When you are in there and see what they do every day – the nurses and the doctors, but also everyone from the care assistants to the porters, to the cleaning staff – it is hard to believe how amazing they are. No matter how busy they are, and they are really busy, they always seemed to have time,” said Clare.

“There were people there to support every element of Caoimhe’s care, not just medical but her emotional and psychological health; they had thought of everything.

“Everything they did was at her pace and to make sure she was okay; they were always so considerate of how she was feeling and how she was responding to everything. They always made it clear: Caoimhe was first, she was their priority and we appreciated that so much,” said Clare.

“It is a vocation – the people on the frontline are the absolute heart and soul of our health system.” After that tough year, the Cullens are now looking forward to Christmas and also very excited to welcome the newest addition to the family, baby Donnacha, who was born last Monday.

When asked about her favourite thing at Christmas, Caoimhe said she was excited about “having Christmas Day without having to go to the hospital and being able to see all my cousins”.

Caoimhe’s Christmas card in aid of the Children’s Health Foundation is available at MoonPig Christmas Cards.

All of the proceeds from each card will go directly towards supporting other sick children and their families this Christmas.