SUPERGIRL, five-year-old Lizzie O’Shea, who is very au fait and accepting of medical matters, is a chip off the old block.
“When Olga and Peg, the POONS Mercy Hospital Oncology outreach nurses, came to the house to check or change her Hickman Line that she had to get her meds, Lizzie said, ‘I will cry, but it’s OK’, says Dr Fiona Kelly, from Castletownbere, who is mum to Lizzie, aged five, and also Jack, aged six.
“And Lizzie became used to taking her own temperature even in the middle of the night,” says Fiona.
“She was able to interpret the reading. When her temperature went up to 37.5 degrees or to 38 degrees, Lizzie said, ‘I think it’s Mercy time!’”
The brave little girl, who was diagnosed with Acute Lymphoplastic Leukaemia, (ALL), on Thursday June 8, 2017, is one of three children heading up the Mercy Heroes campaign 2019 to raise vital funds for the Mercy Foundation Paediatric Oncology Outreach Nursing Service, POONS.
“Lizzie never complained or she never cried bitterly, all during her 26 month treatment plan at the Mercy Hospital, Cork, and Crumlin Children’s Hospital, Dublin,” says Fiona, who is so proud of her brave little girl.
“She was very accepting all through her illness.”
She had her big brother watching out for her.
“Jack has a blue chair at home at the table and Lizzie has a pink one,” says Fiona, who practices as a GP in her home town.
“When Lizzie was in hospital, Jack would ‘talk’ to Lizzie as if she were sitting on the pink chair opposite him, telling her all his news from school. He missed her terribly.
“When Lizzie finally came home from hospital after all her gruelling treatments, Jack did everything for her — sorting her school uniform and putting her socks out. He is very caring.”
Fiona reflects back to Lizzie’s initial diagnosis. She went off to work as usual that morning, caring for people in the community, on Thursday June 8, 2017.
“It was just like a normal day,” says Fiona. “I went to work to the surgery after dropping Jack to school and Lizzie to playschool.”
But that day marked the significant date when the family’s life was turned upside down.
“I had noticed Lizzie seemed a bit tired the previous week and she didn’t have the same levels of energy as her brother,” says Fiona.
“Later that day, she developed a fever and I decided to bring her to the surgery where I took some blood from her.
A few hours later, when the results came from the lab in Bantry Hospital, Fiona was reeling in shock.
“My secretary called me out for an urgent call. When the results of Lizzie’s blood tests were read out to me, I realised my little girl had A.L.L. Our lives were turned upside down,” says Fiona.
“We had been so happy. Now everything changed.”
Fiona, loyal to her patients and to her children, had to quickly find a locum to replace her while she made the stressful journey with Lizzie to the Mercy Hospital for a consultation with Dr Clodagh Ryan.
“It was the longest drive of my life,” recalls Lizzie.
“Dr Ryan confirmed the diagnosis.”
Mother and daughter were facing many more long journeys together for 26 long, arduous months in order to save Lizzie’s life.
“I knew what was involved,” says Fiona. “Sometimes being oblivious can be better.”
Lizzie was accompanied by her mum in the ambulance to Crumlin.
“The road seemed endless,” says Fiona. “I was still in shock, operating in a different mode.
“Everything was going through my head. I knew what lay ahead for Lizzie. She was in isolation for 10 days.”
Multiple red cell platelet transfusions, a Hickman placement for administration of chemotherapy, spinal chemotherapy under sedation, bone marrow biopsies, lumbar puncture, and countless blood tests, as well as steroids, took their toll on Lizzie’s three-year- old body.
“She vomited a lot, she suffered from diarrhoea, and she was very agitated.
“Numerous times Lizzie lost the ability to walk. And her dark curly hair came out as a esult of the high dose of steroids.”
But she was very brave.
“The doctors said there was a 85% chance cure rate,” says Fiona.
“You dwell on the 15%.”
Being away from home, managing her GP practice, delegating duties to colleagues, and worrying about her daughter with Jack at home, Fiona was truly tested mentally and physically.
“My team at the surgery were brilliant. So were my mum and dad. John, the children’s father, helped out.”
The trauma, alleviated somewhat by willing helpers, still had devastating effects.
“There were a lot of sleepless nights. I stayed in the isolation room with Lizzie, who couldn’t leave the room,” says Fiona.
She got some solace from the other parents in the same boat.
“I did go to the Ronald McDonald House for meals. You got a text and I’d head over there. It is a wonderful facility for parents with sick children in hospital.”
Like mother, like daughter, the pair went through the motions, both suffering the cruel effects from the cancer treatment.
Lizzie, always full of beans and full of fun, became listless and lethargic.
“She underwent a personality change,” says Fiona.
“I knew her so well. Now she was different, listless and lifeless. Sometimes she was inconsolable.”
She had another ailment.
“Lizzie was always hungry!” says Fiona.
“She craved savoury foods. Her weight fluctuated. When she first came out of hospital she demanded to go to the local Beara Hotel at 3am in the morning for pork chops!”
Life at home adapted to Lizzie’s condition.
“Constant hand-washing, sanitising everything, wearing no shoes in the house, having no pets, no flowers, no plants and no visitors became the order of the day,” says Fiona.
“Crowded places like the cinema and coffee shops were out. I made sure to change my clothes after work. So we were quite restricted, even with meal times. For Lizzie’s medicine to be effective, she had to eat no later than 5pm. Dinner had to be done and dusted by then. She got obsessed with time.”
How did Jack take to the stringent routine?
“Jack took it all in his stride.”
And mum continued to be there for her children; she continued to be there for her patients. Fiona continued to hope that her courageous daughter would regain her health and regain her childhood.
“At the surgery all the patients asked me; ‘how’s Lizzie doing?’”
She was on the way back to recovery, and will be closely monitored until the age of 21. And she was on the way back home.
“After being discharged from Crumlin, Lizzie was still quite sick and still immunocompromised,” explains Fiona.
“She had to wear a mask when we went outdoors. Over the two years, Lizzie had several hospital admissions due to infections. At home she had the Hickman line still attached for her antibiotic doses and she had to have regular blood tests as well as injections.”
She also had regular visitors from the Mercy’s POONS service.
“Olga Buckley and Peg O’Riordan came to the house regularly to look after Lizzie,” says Fiona. “The POONS service is amazing. It took us two hours to drive to the Mercy in Cork and two hours back. Parking and heavy traffic is always stressful trying to make hospital appointments. Olga and Peg removed that stress and they became our friends. Their services were an invaluable resource for us, not only when Lizzie was diagnosed, but throughout the 26 months of her treatment.”
With a little help from their friends, the support of family and from the community, Fiona and Lizzie are out the other side of their cancer journey and getting on with their lives.
“Lizzie’s treatment finished on August 4,” says Fiona.
“She had her first play date with her pal Lucy from junior infants last week!”
She acknowledges that her daughter is a wonderful child.
“She is brilliant and she is very brave. She accepted every needle and every blood test. I am so proud of Lizzie,” says Fiona. “She has been through so much.”
Fiona, who doesn’t sweat the small stuff, savours every day with her precious family and doing her precious work.
“It wasn’t easy,” she says, recalling the memorable two years Lizzie was treated for childhood cancer. “Now, I don’t take anything for granted. You never know when your world will change and go into turmoil. It can happen overnight. It is sad when you hear about little kids who don’t make it.”
Lizzie made it out the other side back to good health and, like her mother, who cares for sick patients, and like her grandmother, Mary Kelly, who still runs the family pub at 74, the little girl is without doubt, a chip off the old block. She’s a superhero.
“Yes,” says Fiona. “She is our little hero.”
The POONS resource is the only is the only service of its kind in Ireland and provides at-home cancer care treatment for children.
It covers large geographical areas from Youghal to Bantry, and Mitchelstown to Kinsale, as well as some areas in surrounding counties, so that all children have access to the service regardless of location.
HOW YOU CAN HELP
This October, the 2019 Mercy Heroes campaig is calling on people to fundraise for them on October 18. Whether you’re planning a Dress Up / Dress Down Day at work or school, a coffee morning at home or at your local club, or you can help out with Mercy street collections around the county, there’s a way to get involved. To host your own Mercy Heroes event or fundraiser, simply register at www.mercyfundraising.ie and you will receive a free ‘Mercy Heroes’ pack full of information and ideas. Cork’s 96FM and The Echo are the official media partners for ‘Mercy Heroes’ 2019.
If you want to know more about how funds will help, or about bringing Mercy Heroes to your work, school or home, please contact Deirdre on 021 4223135 or visit www.mercyfundraising.ie.