TO have a child diagnosed with leukaemia would be every mother’s nightmare.
Mother-of-four Noreen Doyle has had to go through the ordeal twice, several years apart.
First, her second child, James, had to battle the life-threatening blood cancer disease as a toddler. Then, just over a year ago, her youngest child, Kate, was diagnosed.
Kate was seven at the time and Noreen describes her panic and sense of foreboding when her daughter began to follow a similar path to her big brother, Thomas.
“She was unwell — nothing unusual, she had a temperature, she was tired and pale.
“In any other family it would probably not be of major concern but in ours — well, I knew.
“I had known in my gut for a few days but was terrified to face it, again.”
It was all so familiar and heart-breaking for Noreen, who lives in Naas, Co. Kildare, but has family in Cork.
“My son James was a year and a half old when he became unwell,” she recalls.
“As with Kate, it was nothing major, just reoccurring chest infections and general stuff that children of that age would pick up.
“It was coming up to Christmas. He had turned two on December 22 and in the middle of January he really was sickly and looking pale and lethargic.
“I brought him to my GP and they referred him to Crumlin that afternoon. Many hours later he was diagnosed with leukaemia.
“He was admitted straight away. He was very sick. He was really ill. He was up on blood and platelet transfusions for a couple of days. He was really very low but treatment was started straight away.”
Noreen says there were plenty of setbacks for the family.
“James stopped walking. He was in a wheelchair for a while. He really struggled for the first three months of his treatment. He spent a lot of time in Crumlin.
“My first child, my three year old at the time, was sent to my family in Cork for a while because we were in the hospital with James. It was a challenge, you know.
“It took James about four and a half years altogether for him to become well again. But he did get well and is now an amazing child and after those four or five years as a family we settled back into life as a normal family again.”
That was surely enough drama and anxiety for any family to contend with.
But on April 22, 2017, came the dreaded second diagnosis.
“For a few weeks in March and April, Kate, my fourth child, started getting high temperatures,” recalls Noreen. “It was just high temperatures at first. Then she started taking little naps during the day, she was looking pale and lethargic and I just knew straight away. I just had a gut instinct that we were visiting the same thing again.
“For the first few days I was in denial about the whole thing. I just thought ‘No, this just cannot be the same thing. It just cannot be the case’. I brought her to the same GP. She said ‘Not a hope, lightning never strikes twice.’ She referred us to Crumlin, again.
“We came into A&E and I literally said to them ‘Look, just do the bloods on her as quick as you can because I have a gut instinct with our history’. In two hours they told us that she looked like she was presenting with leukaemia as well. She was seven at the time.”
Professor Owen Smith had been James’s doctor and Noreen still had him on her phone contacts.
“I texted him straight away that night from A&E and I said ‘I think we’re in trouble. It’s me. I need help’. He rang me straight away and called the doctors in A&E. He dealt with them on the phone and said ‘Yes, Noreen, it’s looking like it possibly will be. I’ll be in with you in the morning. And we will deal with this together. We will make a plan’.
The diagnosis of leukaemia came the next day. “We were sent home for two days to get everything together and digest it,” says Noreen, “then we packed our bags and came back in for a period of time. Kate really did sail through her treatment.”
When James was in treatment, he entered a research trial funded by CMRF Crumlin. Ten years later, the results of that had an impact now on what Kate’s treatment would be.
“We’re benefitting from the research James took part in,” says Noreen. “The research that happened from James’s trial and all the research that followed it across those ten years meant that with Kate’s treatment, the prognosis was better, the rate of curing the disease was better, and the length of the treatment is shorter.
“The research James took part in shaved six months off the treatment length that Kate will have to go through, so she has definitely benefitted from him being in that trial.
“Now, we have entered her into a new research trial that hopefully in years to come, some other children will benefit from.
“These trials are critical to the ongoing treatment. It’s not just the treatment. It’s the overall care of the child. It’s the overall quality of the life that the child has.
“You must remember that, while they are sick, they are still children. Whilst they are diagnosed with cancer, you desperately, desperately want them to have some kind of quality of life. You don’t want the cancer to rob them of a couple of years of their life if you can possibly help them at all.
“It’s so traumatic on them and it’s so traumatic on the whole family. It really does feed out to everybody and into the community, like all of the little ones in Kate’s class.”
When Kate was diagnosed, she was due to get her First Holy Communion three weeks later. “That had an awful impact on the little girls in her class,” says Noreen. “The mums were concerned and asked questions like ‘Will she look different? Will she have hair?’
“People who’ve never known a child with cancer, or who’ve never been around a child with cancer, they just don’t know how to react. It causes a certain amount of anxiety.”
However, Noreen now had a mechanism for helping her child, her family, and herself through the treatment process — to radiate positivity.
“Kate would tell you, despite everything, that she has had the best summer ever last year, believe it or not. I’m a very positive person and I try to instil that in my children.
“I firmly believe that, as a parent, you have to feed positivity to your children. They thrive on that. If I’m going to be permanently worried and upset then Kate would pick up on that. Children are so intuitive.
“We have a very strong bond and we’re a very close family. From day one, we told her everything. We told her the truth but that we, as a family would beat this again. We sat her down and we said ‘Do you know what, it’s crap. It’s not going to be easy but we’re going to try and make it as tolerable as possible along the way but you’ve got to work with us’.
“She would be naturally bubbly and naturally upbeat, always. So for every milestone and difficulty she’d have, like when she was getting her some of the harder chemo, we’d organise for her to meet somebody she wanted to meet, to go to a concert or do something to distract her, or arrange events that she had to look forward to.
“I would have no qualms about asking people to help in times like that. People are fantastic. It meant that when she had memories of that awful day or that tough procedure or that difficult injection, it’s diluted with positive memories. She had a fantastic few months.”
Kate has met a lot of rugby players since falling ill. “She has a particular grá for one of the Connacht and Ireland players — Bundee Aki,” says Noreen. “When she got sick she made a list of the things she wanted to do and people she wanted to meet. She always said she’d love to meet Bundee Aki. I said ‘Kate, OK, I’m going to make that happen.’
“It was coming up to her birthday, she was back in hospital and I contacted him. I asked him ‘Could you send her a card or could you send her a message?’ He made this gorgeous video for her and sent it to her and I played it for her on her birthday. She cried with excitement.
“A couple of weeks ago she got to be the mascot for Connacht! She was in her element, let me tell you! Bundee Aki was just fabulous with her, and so was John Muldoon.
“When she got out onto the pitch with the boys, she was just like the Queen of Sheba! She had a ball.
“She really has thrived. She has sailed through her treatment. She has a hugely positive mind-set.”
Noreen adds: “If you acknowledge how awful it is and then do something to reduce how awful it is, to bring something positive into these moments, then maybe she can still have positive memories of the time she was a child, and having cancer is just a part of it, rather than something that ruins or overwhelms it.
“Kate loves Bernard O’Shea and the presenters at 2FM. We got her into the studios one morning. She had a ball. She got taken around the studios and met all the different DJs. People are just so good and to put a smile on a tiny child’s face — wouldn’t it just make your day?”
Noreen says that Kate’s school has been brilliant throughout her treatment and neighbours have rallied round.
“All the mums started a dinner routine so my husband and my other three kids at home were fed properly,” she says. “We were in hospital for a few weeks and when we came home our freezer was stacked full of the most beautiful dinners. School pick-ups and drop-offs, I didn’t have to think about any of it. They were just wonderful!” When James was getting his treatment, he was in the old St John’s ward, before the CMRF Crumlin investment.
“The old ward and the new ward are poles apart,” says Noreen. “When we came in here first with James, you’d be in a room divided into two with a curtain pulled across, so there’d be one child on one side of the room with their family and another family squeezed into the other side of the room. There was no en suite bathroom. You could be sharing the bathroom with up to eight other families. There was no privacy. You were sleeping on a fold-out bed.
“Here, now, you have your own room, your own en suite bathroom and it’s luxury compared to what it used to be. This refurbishment just makes it so much better and easier during a very difficult time. Now, when we come in, we make the room our own with fairy lights, her own teddy bears and cushions so that it feels a little bit like home for her. There was no comparison between the old and the new.
“I’ve seen, first hand, the benefit of the money CMRF Crumlin puts into both Our Lady’s and also into the National Children’s Research Centre.
“I wouldn’t wish a sick child on any parent, but if your child is ever sick, then the best thing you can do is hope there’s good research to help improve or cure their illness, and that there’s amazing staff and state-of-the-art facilities to help them get better.”
CALL FOR PUBLIC DONATIONS AFTER BIG BREAKTHROUGH IN DISEASE RESEARCH
SCIENTISTS are calling for more public investment in leukaemia research after a major breakthrough identified a likely cause of the childhood version of the illness.
CMRF (Children’s Medical & Research Foundation) Crumlin, which funds initiatives, research and equipment to help sick children, asked for more public donations to enable more research to be carried out.
Professor Mel Greaves of the Institute of Cancer Research said a combination of a genetic mutation, followed by an infection with an unknown bacteria or virus, is the most likely cause of the most common subgroup of childhood leukaemia.
In the journal Nature Reviews Cancer, Prof Greaves said most cases of leukaemia arr caused by two crucial steps — the first occurs in the womb, when a random genetic mutation predisposes the baby to leukaemia. The second is caused by exposure to one or more common infections.
“The finding indicates that exposing children with the first stage mutation to benign microbes early in life could stop them from developing leukaemia.”
His research indicates that Acute lymphoblastic leukaemia has a precise biological cause, and is triggered by a variety of infections in predisposed children whose immune systems have not been properly primed.
Professor Owen Smith, Professor of Paediatric and Adolescent Medicine at UCD School of Medicine, said the most hopeful part of this research is that most cases could possibly be prevented in the future.
“Acute lymphoblastic leukaemia (ALL) is the most common type of childhood cancer.” said Professor Smith.
“It’s wonderful that research is pointing towards more answers and we are another step closer to identifying some of the causes of childhood leukaemia.
“Finding out what causes it is the first step to finding out how to cure or indeed prevent it as we do with some childhood infectious diseases.”
“Approximately 1 in 20 new-born babies harbour this genetic mutation yet only 1 in 10,000 children develop this specific type of childhood leukaemia,” added Prof Smith.
“I suppose the best take home message from this research is hope — because it suggests that the commonest subgroup of childhood leukaemia could be prevented from occurring in the first instance, which would be a major step forward in childhood cancer.”
Lisa-Nicole Dunne, CEO of CMRF Crumlin, said paediatric research is “extremely underfunded” in Ireland” Around 2% of the medical research in Ireland is for paediatric research. Medical advancements are not possible without investing in research. “Because Ireland has a small gene pool, it’s the perfect country to be at the forefront of medical research.
“We’re encouraging people across Ireland to join us in our investment in paediatric research and be part of the journey striving for cures to childhood illnesses and diseases.”