Playroom at St Luke's a proud legacy for bereaved parents

Teenager Kate Fitzgerald had a strong social conscience and wasn't slow to voice her opinion when she encountered shortfalls in "the system" during two years of treatment for a bone cancer.

“She would not let things sit if they were not the right way,” her mother, Tina, explains. It was why, after they knew Kate’s illness was terminal, the idea of fund-raising in her memory began to germinate. They wanted to support improvements at institutions involved in her care, from which other children would benefit.

One target in the minds of Tina, her husband David and their eldest daughter Sarah, then aged 19, was to fund adolescent-friendly facilities in the waiting area of St Luke's Hospital in Rathgar, Dublin – the only hospital in the country that provides radiation therapy for children. The Fitzgeralds would not have been the first, or last, to think that sitting among much older, very sick people with only Sky News as a distraction was hardly psychologically helpful for youngsters.

It has given us a sense of satisfaction that we have been able to do some good because of the tragedy

“Sarah was very aware that she was going to lose her sister, so we had already discussed it between the three of us, that we were going to run a ball in Kate’s honour to pull off what Kate wanted done,” says Tina. They thought having such a project might help the three of them in their grief.

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But, in an unbelievably cruel twist of fate, just two weeks after Kate's death, aged just 15, on July 28th, 2007, Sarah, the couple's only other child, was killed in a road accident. She was being driven back to the family's Co Kildare home by her boyfriend, Jason Burke (20). He too died of his injuries five days afterwards.

Just over 10 years later, Tina and David are recounting some of their darkest days for this interview because the adolescents' room, along with a children's play area, was, finally, officially opened in St Luke's recently, by the Minister for Health, Simon Harris.

For the Fitzgeralds, it was the last piece in a jigsaw.

As we sit in the dining room of the Killashee Hotel, outside Naas, the cheerful bustle of departing guests after a wedding the day before echoing in the grand hallway outside, Tina and David fluidly start or finish each other's sentences. If one of them chokes at a particular memory, the other takes up the anecdote, allowing time for composure to be regained.

They are candid about how Sarah’s death, coming so soon after Kate’s, attracted widespread media attention for a few days, thereby making their grief very public and generating huge support for their subsequent fund-raising.

“That left us in a great position to do what Kate wanted us to do,” says Tina. “We made a decision when we decided to fund-raise, we would stick our neck out, ask for a lot and then promise that we would never go back again.”

They were also determined that the money would go towards "tangible" things – in Crumlin children's hospital and in St Brigid's Hospice, Co Kildare, as well as in St Luke's – rather than just be handed over for general funds.

That’s why, in the case of St Luke’s, they held out for completion of Kate’s dream when, for a while, it looked as if the hospital itself might be closed.

“We were patient with them through their difficulties,” says David. The teenage room “was our idea, they weren’t ready to do it and then they became ready to do it”. The Friends of St Luke’s joined in, to fund the creation of a play area for younger children as part of the project that got under way in 2015.

Exactly a year after their deaths, a black-tie ball was held in memory of the sisters, in the Killashee. Kate had died on a Saturday and Sarah died two Saturdays later, so, when the year came around they ran the ball on the weekend in between the two dates and more than 400 people attended.

The Fitzgeralds decline to say exactly how much was raised: “significant”, is how David describes the total. “Huge amounts,” Tina chips in, paying tribute to the “amazing” 10-woman committee who helped run the event. No detail was left to chance. “We had a great night,” she adds.

Did it help them cope with their grief? “The organisation of it, definitely,” replies Tina.

“That distracted you rather than helped you,” suggests David. “In the long term,” he continues, “it has given us a sense of satisfaction, that we have been able to do some good because of the tragedy”.

“In that year, it was a focus,” says Tina. “It didn’t allow you to be too drawn into the negative.”

“It’s a volatile road to walk afterwards,” says David, choosing the adjective carefully. “We made the decision after the girls died to make no decisions. We knew we were bound to be unsure of ourselves.

“That stood to us. Now we look back, we have no regrets about anything we did. The temptation to look for that feel-good feeling again, whether it is in drink or drugs or sex or whatever – the temptation is there. But we made the decision we would not do anything that would jeopardise our road to recovery.”

Tina says they know people who have been paralysed by bereavement. “The clock has stopped the day they lost their loved one . . . fortunately that hasn’t happened for us.”

She attributes that to the projects they have thrown themselves into and the good people they have around them.

“They were people we had in our lives and they stepped up and have never left us.”

Hardly surprisingly, David admits, that “our tolerance of bulls**t has waned a lot”.

In the circumstances, it’s perhaps strange to hear the Fitzgeralds talk about St Luke’s as “a wonderful” hospital “with a lovely feel to it”.

But it is a sentiment echoed by a more recently bereaved parent, Val Farrell, who remembers it as "a very special place" for her son Ben, who died of cancer at the age of five in August 2016.

“St Luke’s was a very happy time in Ben’s treatment,” she says, acknowledging that it might sound odd for her to say he was “so well” during his treatment there, after being diagnosed with a Wilms tumour in his kidney.

"He would go in every morning on his scooter – we would take the scooter out of the boot of the car and he would scoot in. He would arrive down with the nurses and have banter with them and tell them he was after coming over on the M50 alone [from their home in Finglas], that Mum and Dad were following but they were in traffic."

Then her son, who she describes as “having a character second to none”, would proceed to jump over the couches. “He was so well. I used to say to him ‘Ben, there are sick people here’,” recalls Val.

But on their first visit she and her husband Alan found the place bleak, in comparison with the more age-appropriate ambience of Our Lady’s Children’s Hospital in Crumlin.

“We were very saddened by it – it was our first experience of a cancer hospital as such,” she explains. They were realists and knew why they were there, but it was hard to be sitting with Ben among very sick adults.

“There was an area full of 1970s toys, which Ben completely snubbed on the first day,” she remarks. However, the staff proved to be “phenomenal” and Joe the porter became one of Ben’s favourites, as he would always bring the little boy to feed the resident fish.

Ben had been diagnosed with stage four cancer on Christmas Eve, 2015, and started chemotherapy that Christmas Day.

“It was extremely quick and it seemed extra cruel, especially for a child, for that to be happening,” says Val. But she and Alan were okay with losing one Christmas, in the hope that the following Christmas they would be able to look back and laugh at what they had had to go through. Their younger son, Jack, who is now aged three, was too little then to know what was going on either way.

That first course of chemotherapy didn’t work for Ben and he was deteriorating rapidly before a second round proved more effective. His primary tumour was then removed, after which he started radiotherapy in St Luke’s in May 2016.

“For the first time since January we had a routine,” says Val. “We were over there every morning at nine o’clock. He would wake up from his treatment, head home, put on his school uniform and then head into school for an hour–- or however long he fancied, to be honest.”

He didn’t need to go to school but they were craving normality – to keep Ben in some sort of routine. “My heart used to burst when I saw him walking through the gate to school because I knew he was okay.”

Each visit at St Luke’s lasted about an hour. A paediatric consultant would come from Crumlin to sedate Ben – and any other child that might be there that morning. He got used to a certain consultant coming over and she would give him his anti-sickness drug and then the sedation one.

“But a different consultant came one of the mornings and he was an older man,” says Val. “He was giving it to Ben the other way around – the sedation first and then the anti-sickness.

“Ben sat up and said ‘no, no, no – it’s that one first and then that one. And he looked the consultant straight in the face and said ‘have you done this before?’

“The nurses howled and the consultant replied: ‘Yes – and I even have a certificate’, which made it even funnier for us. Ben couldn’t understand why everybody was laughing.”

Such fond memories are part of the reason Val and Alan can bear to stand in St Luke’s today and look around. They have been back twice since his death – the first time to drop over toys being donated in Ben’s memory for the new play area and the second time for its official opening.

Val had been at a loss about how to mark Ben’s birthday on March the 10th last, the first since his death. It was very hard not to buy toys for him, she says, and she knew extended family and friends would want to do the same.

“I said to my family, anybody who wants to buy something for Ben, buy it and we’ll bring it over to St Luke’s because they don’t have toys over there.”

When she rang St Luke’s to tell them their plan, staff said that, coincidentally, they had an empty playroom which had just been constructed.

“I said ‘let us fill it – and continue to fill it’. We have committed to keep that playroom packed to the rafters.

“On Ben’s birthday, we’ll get together and continue to buy toys. I know I can’t give them to Ben but we do it in his memory. It is as helpful for us as it is for the children who get to play with those toys, to be honest.”

When the Farrells were told towards the end of May 2016 that the radiotherapy wasn’t working on the secondary tumours on Ben’s lungs, they were given some choices.

“One of them was no treatment whatsoever – go straight to palliative care. Looking at Ben, we just couldn’t accept that,” says Val, who recalls having that discussion with the consultant, while watching Ben playing outside, hanging upside down on a slide.

“It was really, really shocking – I thought to have that conversation you would be looking at a very sick child. He was sick but he wasn’t visibly showing signs at that point.”

They looked at getting him into UK trials for treatment of Wilms tumour. But it was "very frustrating because red tape was standing in the way. The HSE weren't going to pay, the NHS wasn't going to pay and they wouldn't let us pay ourselves because that would be unethical."

The Farrells shifted their attention to the US, where there was the option of two trials. “As a parent trying to make the decision which trial, it’s like playing Russian roulette with your child’s life because you’re not a medic, you don’t know.”

It was going to cost €260,000 to get Ben even looked at for consideration on the trial they chose. "We got the fund-raising done, we got over there but unfortunately it was too late." After time was swallowed up in the genetic testing of his tumour to see what therapies he might respond to, Ben was very sick and they knew they needed to return to Ireland.

“He got home and that was very important to us. I don’t see any child’s death as being peaceful but you would, medically, call it a peaceful death, at home” – on August 17th, 2016.

The filling of the play area seems a perfect legacy for Ben, Val adds, because it’s “something fun – something that he would absolutely approve of.

“When I was over there, I could nearly see him in my mind’s eye: how much he would love it and how much fun he would have got out of it – and it would have stopped him climbing the sofas.”

Standing near them at the openin g, the Fitzgeralds too knew that Kate would have been very pleased with what they had achieved in her name.

And it was serendipitous that, totally unbeknownst to the organisers, the occasion fell on what would have been her 26th birthday.