Saturday 25 May 2019

When cancer strikes your children twice - one parent tells her story

Learning that her son had cancer was terrifying for mother-of-four Noreen Doyle. So how did she cope when her youngest child was later diagnosed with the same illness?

Noreen Doyle with her son James and daughter Kate, both of whom were diagnosed with leukaemia
Noreen Doyle with her son James and daughter Kate, both of whom were diagnosed with leukaemia
Noreen Doyle with her son James and daughter Kate, both of whom were diagnosed with leukaemia

Ailin Quinlan

What do you do when first one, then two of your children are diagnosed with leukaemia?

That was the nightmare facing mother-of-four Noreen Doyle from Naas, Co Kildare when her young son, and later, her daughter, fell prey to the cancer.

Noreen's son James became ill at 18 months. The ordeal began, quietly enough, with a series of chest infections over the year of 2006.

By December, James had become lethargic, Noreen recalls, and in early January 2007, after months of antibiotics, he was referred to the emergency department of Our Lady's Children's Hospital in Crumlin.

"His colour was very bad. He was napping a lot during the day, and he had mild bruising on one leg," recalls Noreen.

The toddler, who turned two that Christmas, was diagnosed with leukaemia a few weeks later, on January 27, 2007.

The following months were a blur - James was in hospital much of the time, says Noreen, who was pregnant at the time with her third child, Alison, now aged 11.

The upheaval was huge. Because Noreen was spending so much time at the hospital with James, her husband, John, a self-employed businessman, juggled work and hospital visits, while the couple's eldest child, Adam, who was four at the time, was sent to stay with relatives in Cork.

Noreen remembers the time: "James was really ill. He was 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 setbacks on the road to recovery, however. "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. It was a challenge."

James had intensive chemotherapy for the first 12 months following diagnosis. After that came two-and-a-half years on maintenance or low-dose chemotherapy.

"It took James about four-and-a-half years to become well again. But he did get well and he is an amazing child," says Noreen.

"James is 13 since last December, and doing very well. He completely finished the yearly check-ups about three years ago."

At last everything was back to normal - until the spring of April 2017, when Noreen's youngest child, seven-year-old Kate, started to become unwell. Once again, the illness made its appearance quietly.

"For a few weeks in March and April, Kate started getting high temperatures. Then she started taking little naps during the day. She was also looking pale and lethargic and I just knew straight away," says Noreen, adding that she was "terrified" to face cancer, again. "I just had a gut instinct that we were visiting the same thing again."

It was back to the emergency room. "In two hours they told us that it looked like she was presenting with leukaemia as well," says Noreen.

Kate underwent a number of tests to determine what type of leukaemia she had and what level she was at. "We were sent home for two days to get everything together and digest it, then we packed our bags and came back in for a period of time," Noreen says.

"Initially I was totally devastated that Kate and the family had to go through this again. I went through the devastation for 24 hours. I was angry with the universe - then my 'get on with it' attitude kicked in."

Kate, now aged nine, started treatment almost immediately, and things went well. Today, Kate is still in treatment, having completed the first round of chemotherapy and having started the maintenance programme. Her mum says she has done "phenomenally well".

It's been a hugely demanding few years, but Noreen has navigated it because of her pragmatic mind-set and natural can-do instinct.

"As anyone seeing a child through a major sickness knows, the child is reliant on you totally," she says. "I kicked into a mode of 'let's get on with it and get her well'.

"I am very level-headed when it comes to [difficult] situations - I say: 'how do we approach this?' I don't go into panic mode; it's just the way I am."

"For any parent with a child who goes through this, it's afterwards that the parent needs to look back and realise, 'that was tough for everyone'. It's when your child is on the road to recovery that you realise you need to self-care, and look after your mental health - this would be common to many parents with very sick children."

Kate benefited from a research trial funded by the Children's Medical and Research Foundation at Crumlin, in which her brother James had participated some years earlier.

While the trial had no major impact on James, says Noreen, the results had an effect on the duration of Kate's treatment.

"A different cocktail of drugs was given to her, and her quality of life during her year of intensive treatment was much better in terms of the length of the overall treatment.

"The research James took part in shaved six months off the treatment length that Kate will have to go through so she has definitely benefited from him being in that trial.

"Now, we have entered her into a new research trial that, hopefully, other children will benefit from in years to come.

"These trials are critical to the ongoing treatment," she says, adding that the overall quality of life experienced by a child receiving treatment is also extremely important.

"You must remember that, while they are sick, they are still children.

"Whilst they are diagnosed with cancer, you 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 help it. It's so traumatic on them and it's so traumatic on the whole family."

Noreen's policy of being honest, but staying positive with her children, paid off, she believes.

"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," she says.

"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 strong bond and we're a close family.

"From day one, we told her everything. We told her the truth but also that as a family we'd 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'.

At every difficult milestone, Noreen and John made a point of organising for Kate to meet somebody she wanted to meet, go to a concert or simply do something that would distract her.

"I'd 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.

"We have met a lot of rugby players. She has a particular grá for one of the Connacht and Ireland players - Bundee Aki," explains Noreen, who says her daughter had always wanted to meet him.

"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 '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. 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.

"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."

The community in Naas has been unbelievably supportive, she adds.

"All the mums started a dinner routine so that my husband and my other three kids at home were fed properly.

"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 were also something she didn't have to think about. The other parents in the community "were just wonderful!".

Noreen and John are strongly supportive of medical research. They say that they have seen the benefits first-hand.

"Because this is our second time round, we see the benefits of the research and we're strongly supportive of the Children's Medical Research Foundation arm of Crumlin."

"I've seen 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 done to help improve or cure their illness, and that there are amazing staff and state-of-the-art facilities to help them get better."

The family is working with the oncology department at Crumlin and with a hospital in Memphis in the US and undergoing genetic testing, because, although there have been cases of cancer in the family tree, says Noreen, she and John were originally told by the experts that leukaemia was not hereditary.

"However, they are taking another look at that now," says Noreen.

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