Tuesday 22 October 2019

'She wasn't herself at playgroup so I took her to the doctor - later that night she was diagnosed with leukaemia': Irish mum on her three-year-old's shock diagnosis

Barretstown is a fun-filled refuge for children with life-threatening illnesses. Lisa Kelly tells our reporter how the recovery of her six-year-old daughter Jaime, from leukaemia, is being greatly helped by spending time there

Jaime Jane Hanrahan with her mum, Lisa Kelly. Photo: Dylan Vaughan
Jaime Jane Hanrahan with her mum, Lisa Kelly. Photo: Dylan Vaughan

Joy Orpen

What does a little girl in Waterford have in common with champion Irish golfers, a four-leaf clover and a boy named Brennan living in the southern US State of Georgia? The answer is that they are all part of a unique initiative to raise funds for Barretstown, a dynamic centre offering children living with life-threatening illnesses the opportunity to be carefree again.

Jaime Jane Hanrahan, a delightful, chatty, energetic six-year-old, from Ballytruckle near Waterford, is one of the many thousands of children whose lives have been transformed by the magic of Barretstown. Like many of the other "campers", she was living with a very serious illness at the time of her visits.

Lisa Kelly says she and her partner, Enda Hanrahan, first became concerned about their daughter Jaime's health when she was three-and-a-half years old. "She looked pale and lacked energy," says Lisa. "She wasn't joining in at her playgroup, which was unusual. So I took her to the doctor, as I thought she was anaemic."

Having examined the child, the astute GP immediately referred her to the paediatric unit at University Hospital Waterford (UHW). Later that night, they learned that Jaime, an only child, had acute lymphoblastic leukaemia. "I was in complete and utter shock," says Lisa. "I was told that she would be transferred to Our Lady's Children's Hospital, Crumlin (OLCHC) in Dublin, the next day. So, even though I was stunned, and bone-tired as well, there were practical things to do."

Within 24 hours of visiting their GP in Waterford, Jaime had already been admitted to Crumlin. "We were so lucky that it all happened so fast," says Lisa. "An early diagnosis was really crucial in her case."

The next day, Jaime was seen by a consultant haematologist who confirmed the diagnosis. A Hickman line (Freddie, to the kids) was inserted into her chest to deliver fluids, medication and to draw blood. Chemotherapy began immediately.

In the blink of an eye, the lives of the Kellys and the Hanrahans had been turned upside down. But they did get a couple of breaks. Apple, Enda's employers, were most understanding, while their Auntie Mona, in Celbridge, opened her heart and hearth to the family. "She housed, clothed and fed us," Lisa explains. "She even did our washing." The couple took turns staying in Celbridge and sleeping in their daughter's hospital room.

Soon after she began treatment, Jaime lost the use of her legs, a side-effect of one of the drugs. And even though the paralysis was partly reversed a few days later, this already fragile little girl got a terrible fright.

As the chemo progressed, Jaime's appetite diminished, so she was fed by tube. From time to time it would become dislodged, and staff would have to reinsert it into her nostrils. Lisa says Jaime found this procedure "extremely traumatic".

It was a harrowing time for all concerned. Most worrying was the fact that Jaime's liver and spleen were swollen. Then doctors discovered she had a dangerous fungal infection, leading to very real fears for her life. "Emotionally and physically, I crawled through those days," says Lisa.

Eight weeks after she was first admitted, Jaime was allowed to go home. "She was like a newborn deer," Lisa remembers, with tears in her eyes. "She had spindly legs, could hardly walk, and was very weak." Jaime was nowhere close to being out of the woods. In fact, her parents had known from the outset, that her treatment would take at least two-and-a-half years. "It seemed like an eternity," says Lisa. "If they'd said 100 years, it wouldn't have felt any different."

And even though she lived in semi-isolation at home, Jaime's immune system was so low that she constantly got infections and had to be hospitalised at UHW. In the meantime, Lisa had been trained to administer anti-fungal medication intravenously at home; to take blood for testing, and to hygienically maintain the Hickman line.

When Jaime was about a year into her treatment, she and her parents went to Barretstown in Co Kildare, for a family weekend. Jaime still talks about the experience. "Making friends was the best," she gushes delightfully. "You have to dance before you can get your food, and I loved going on the stage to sing."

"We felt we could take Jaime there because if she needed medical help, she would get it," says Lisa. "When your child is very ill, you wrap them in cotton wool. At Barretstown, she could be like other children, and have lots of fun. The word I hear used most often in relation to Barretstown is 'magical'. There really is no other way to describe this very special place."

So, what you may ask, is the connection between Barretstown and the aforementioned champion golfers?

Brennan Simkins lives in the US. When he was seven, he was diagnosed with a rare form of leukaemia. At a certain point, he was given less than a one per cent chance of surviving. But Brennan, now a teenager, clung to life.

One day, this golf-mad-lad's father took him to the studio of artist Jace McTier, who had done portraits of Rory McIlroy, Darren Clarke, Padraig Harrington and Graeme McDowell. Brennan then suggested that McTier amalgamate all four portraits into one image, like a four-leaf clover. The prints would be sold to raise money for Press On - a children's charity co-founded by the Simkins family - and for Barretstown.

Each limited-edition print, signed by all four golfers, costs €300, and comes with a certificate of authenticity. Director Tim O'Dea said: "Barretstown is delighted to be one of the beneficiaries of the Champions 4 project. We are very grateful to the Simkins family, and, of course, to the four golfers. The funds raised will ensure we can deliver even more life-changing programmes for children and their families affected by serious illnesses like cancer." Speaking from Georgia, Turner Simkins says, "Brennan is over the moon about this project, and has thanked each of the champions personally."

Jaime had her last chemotherapy session recently, two days after her sixth birthday. Sweet Jaime is now full of confidence - she is doing really well in senior infants, and is planning yet another fun-filled visit to Barretstown.

The Champions 4 prints can be purchased online, see champions4.com. They will also be available at Brown Thomas and Arnotts for a limited period

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