‘I rang them and said, my daughter is not dying, you’ve got the wrong child’

When Ruth O’Sullivan opened a letter inviting her family to a camp in Barretstown, she was very upset at the apparent mistake. “I rang them immediately and said ‘my daughter is not dying, you’ve got the wrong child’, and I’m crying on the phone.” The voice at the other end said: “I think you need it more than she does.”

Ruth, who thought she knew all about Barretstown after fundraising for them in her 20s, was not convinced. Yes, her only child, Madeleine Chivers, had been operated on for a brain tumour the previous summer at the age of 11, but all had gone well. They were trying to move on.

However, she consulted their daughter’s school principal, who thought it would be a good idea, pointing out that as a family they were “very alone on this journey”.

So Ruth, her Australian husband, Gordon Chivers, and Madeleine reluctantly accepted the place on a family camp and arrived at the gates of Barretstown Castle in Co Kildare, where they were instructed to leave their phones – and effectively the world – behind them.

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“We were a family not wanting to go,” says Ruth simply, with Madeleine nodding in agreement, as they sit in the living room of their Rathfarnham home in Co Dublin. In truth, they had no idea then how much they needed it or how that weekend would be a turning point in all their lives – particularly for Madeleine.

Fast forward nearly eight years and Madeleine, now aged 19, has just completed her first-year exams in business and Spanish at Trinity College Dublin, and is about to head back to Barretstown to work there for the summer. A remarkable story of chance – both good and bad – has come full circle.

Her recounting of what she has been through offers insight into the deep-seated fears of a child who has had a serious illness. It also gives a glimpse of the “magic” of Barretstown, which nobody can really understand unless they have been through it – and you wouldn’t wish the sort of circumstances attached to that on anyone.

Celebrating its 25th anniversary this year, Barretstown was set up by the late film actor Paul Newman. He had opened the Hole in the Wall Gang Camp in Connecticut in 1988 – for sick children who could not participate in the great US tradition of summer camp.

"Paul and doctors who were referring children to the camp realised it was having a profound impact on these children," says Barretstown chief executive Dee Ahearn. When children were travelling across the Atlantic to attend, Newman looked around Europe for a camp venue to save them the trip.

"I think we should all be very proud that the Irish government welcomed Paul and that the then taoiseach, the late Albert Reynolds, suggested Barretstown as a suitable location," says Ahearn. On his first visit, "Butch Cassidy" fell in love with the place. The OPW leased it to him for £1 a year and the camp now takes children from 16 countries across Europe.

From serving just 124 campers that first year, Barretstown has grown to involving more than 8,300 last year, through both its onsite events and outreach programme at children’s hospitals in Dublin, Cork, Belfast and Liverpool.

Fall off a bunk bed

Never has a fall off a bunk bed been as fortuitous as it was for Madeleine when she her family were holidaying in a log cabin in Co Roscommon during the summer of 2011. Her mother heard the bang and investigated but all seemed well with her daughter.

However, the next day she was complaining about feeling unwell and, unusually, didn’t want to go fishing. Not knowing the area, Ruth was resolving to bring her daughter to one of the children’s hospitals in Dublin to be checked out, when her brother happened to phone. When he heard what she was intending, he suggested they go to Sligo hospital instead, which was only about 65km away.

The young registrar in Sligo noted that although Madeleine was very keen to leave, she did admit she didn’t feel well when she stood up. He had a word with a consultant who, says Ruth, just happened to be head of A&E consultants in Ireland at the time.

The consultant authorised a CAT scan, primarily because he thought it would be too much hassle for the holidaying family to come back if Madeleine continued to complain about feeling unwell.

“The next thing the whole world changed,” recalls Ruth. “They took us into the room and left Madeleine there and said ‘I don’t know how to tell you this, she has concussion’. I said, ‘that’s okay’, and he said, ‘it’s not really because we’re after finding a brain tumour’. It was completely coincidental.”

The consultant explained it was in the back of the brain, the cerebellum, and that it seemed to be “encapsulated” – it hadn’t spread.

Ruth also remembers him turning to Madeleine to say they had found a lesion on her brain. Even at age 11, the girl’s first response was, ‘is that a tumour?’.” She reckons she knew the word from TV shows. “I burst out crying and hugged Mum and Dad; my mind went blank.”

When Ruth told the doctor she couldn’t believe what he had just done, he replied: “Trust me, in time you will appreciate that I’ve done this. She’s an intelligent 11-year-old looking at two parents falling apart, she has to be told.” Indeed, Madeleine was soon to make her parents promise they would include her in everything and not hide the truth.

She was transferred to Beaumont in Dublin where brain surgery to remove the tumour was scheduled for 10 days later, giving them time at home that Madeleine has no memory of but Ruth remembers as “horrendous”. She and Gordon went back to work but “the only person who was normal in all of this was Madeleine”.

When Ruth took her daughter in for surgery, she hadn’t foreseen how difficult signing the consent form would be.

‘Falling apart’

“I remember falling apart. My question was: ‘Has any child come out of this undamaged?’ And he said ‘let me go and check . . .’” The answer turned out to be: “Yes, but had severe depression.” However, as was pointed out, she really had no choice but to sign the form.

We had to tell her she might wake up unable to move or speak and the eyes could be rolling

“We had to tell her she might wake up unable to move or speak and the eyes could be rolling.” The part of the brain being operated on affects mobility, balance and speech.

Madeleine remembers she wasn’t talking initially after the operation on August 3rd, 2011.  When she finally came to, her first question was: “Where are my knickers?”

Moved out of the high-dependency unit after 45 hours, she was on a ward with two other girls. “We all got on really well, laughing and stuff, and it brought an edge of normality.”

One day, Ruth was phoned to say her daughter was very sad and they suggested some friends from her after-school creche should visit. Twenty of them did just that, coming over in a bus.

“Mad,” says Madeleine. “But it was great.”

Once she was discharged from hospital, the family felt very alone as Madeleine started to recuperate. Gordon was “militant” about his daughter doing her physio exercises. He restricted visitors to the house to between 2pm and 4pm, so she could save her energy for coaxing her neural connections back to normality.

“I couldn’t sleep when I first came home, up to my first MRI,” says Madeleine.

“It was like dealing with a baby, I would have to get in and hold her for hours,” says Ruth, who was trying to continue her healthcare job with the elderly nuns in the local Loreto convent.

It transpired it was fear that was stopping Madeleine sleeping. She was anxious about the MRI that Beaumont was to going to do on her spine.

“A girl in the ward had been operated on her spine and she would be screaming with the pain and stuff. And that sort of affected me. I had had one scan where I didn’t think anything would be wrong and something had showed up; I was afraid of the same thing happening again.” That is how she understands it in hindsight but at the time she didn’t know what it was. The day they heard the spinal scan was clear, she came home and slept all night.

Benign

Although the brain tumour had been benign, Madeleine still had to attend the oncology department in Crumlin hospital for regular check-ups because it could start growing back, in which case she would need radiation.

Just 3½ weeks after surgery, Madeleine was determined to go back to Loreto Primary School for the first day of sixth class. A compromise of a few hours a day was reached with the principal, Sr Maria Hyland, who said she would have to wear a wig to cover up the large scar running down the back of her head into her neck.

“She was right because the scar wasn’t good,” says Ruth, who decided to be very honest with her daughter about that. “Madeleine used to say ‘how bad is it?’ and I would say ‘it’s awful’.”

My 11-year-old brain saw Mum and Dad were already stressed enough – although they didn't really show it to me, I could tell

Although Ruth worried about her daughter going back to school so soon, she admits it was a huge relief to be able to hand her over to a place where Sr Maria “minded her like a mammy”.

Despite all the signs of physical healing, Ruth still felt she had not got her daughter back over the following months. She talked very little and wouldn’t say how she felt.

“My 11-year-old brain saw Mum and Dad were already stressed enough – although they didn’t really show it to me, I could tell,” explains Madeleine. “I was thinking I don’t want to say ‘I’m having a bad day’ or how I am feeling because I am just adding to it. That probably made it worse because they were worrying about me. I became very introverted.”

Change came during that family weekend in Barretstown, where Madeleine was able to be a child again and Ruth says she has never seen Gordon laugh as much.

It was significant that Madeleine had to ask which of the twin girls staying beside them was the ill one. She started to realise that maybe she didn’t stick out as the “sick girl” the way she thought she did.

The last thing Madeleine had to do before leaving Barretstown was to climb up a pole and jump off a small platform to grab a trapeze bar hanging nearby. Although safely harnessed, she was afraid to jump and her parents and other onlookers were shouting up encouragement.

Floodgates of tears

“I think what happened was, that when she jumped, it released everything,” says Ruth, welling up at the memory of how the floodgates of tears opened.

Madeleine says: “I was crying for leaving Barretstown, in my brain. But in hindsight, I was just crying for everything.”

“She cried and cried for 24 hours and told me how she felt,” says Ruth. “I had known as a mother that this was all in there and I just didn’t know what to do.

“I don’t know where Madeleine’s life would have gone if that release had not come. At that very formative age, you internalise all that pain.”

Madeleine, who attended four summer camps up to the age of 15, before going back for leadership training two years later, still struggles to sum up the Barretstown magic.

“It’s like that place where nothing is impossible.”

For instance, she remembers a blind girl scoring a bulls-eye in archery – “she was so elated” – and a boy, usually uses a wheelchair, being harnessed up to the top of the rock-climbing wall.

“Everything is mad but it makes so much sense,” she says.

“We call it serious fun,” explains Ahearn. All the activities are “designed to rebuild confidence and self-esteem”. A study by Yale School of Medicine showed 79 per cent of parents reported an increase in their child’s confidence; 77 per cent said their child had better self-esteem and 75 per cent noticed increased independence.

The children and families that come here have a lovely time but there is a science behind it

“It’s not just a holiday. Of course, the children and families that come here have a lovely time but there is a science behind it,” Ahearn adds.

About 7 per cent of former Barretstown campers return to work with the organisation, like Madeleine, who is so passionate about the place it’s hard to believe that a few years ago she wouldn’t even mention to friends that she had been there.

“I think it was just something else that made me different,” says Madeline, who still goes for annual check-ups and has to wait until 2021 for the “all all-clear”, as her mother terms it.

It was only when Madeline returned from her fourth summer camp proudly wearing the Barretstown tee-shirt that a grateful Ruth was able to write to staff and say: “Now I know she has recovered.”

‘Press Play’ campaign

From high ropes to paddling their own canoes, there will be nothing the 36 corporate teams competing in the Domino's Amazing Race for Barretstown on May 30th will be asked to do that the children don't do.

The event on the grounds of Barretstown, with a perpetual challenge cup going to the winners, is part of a new “Press Play” campaign to raise an additional €1 million a year for the next year five years, on top of the €5.5 million they have to generate every year.

For everybody who attends camps, the story is the same, says Dee Ahearn: “Normal happy family life and then a child is diagnosed with a serious illness. All of a sudden, their lives are put on pause and the focus for the entire family is about ensuring that the child gets better. And that happens at a price.”

That’s where she and her team of 60 staff and 2,000 volunteers come in. “We press play.”

They are aiming to expand their operation so that all the estimated 18,000 children who have a serious illness in Ireland will be able to benefit from Barretstown programmes.