The mental breakdown was a long time coming for Carly Keogh. It was only when she heard that her daughter, Aoife, was well enough to finish a second lengthy programme of chemotherapy for brain cancer that it finally hit.
“It was safe for me to fall apart because she was doing well at the time,” says the now mother of four, who hadn’t realised the toll that being strong for the family, after Aoife’s initial diagnosis at six weeks old and then a recurrence some years later, had taken on her own health.
Carly recalls the day she went into her GP to get a continuation of sick leave in 2017 when Aoife, then aged seven, was finishing her chemotherapy the second time. Having taken carer’s leave for her daughter’s treatment when she was a baby, second time around she found out that she could not take carer’s leave again for the same child.
“They told me I could if it was one of my other children because I hadn’t taken it for them – but they didn’t need it. It’s strange,” she remarks about just one aspect of State bureaucracy that she struggled with as an over-stretched parent in a family living with childhood cancer.
As the GP started talking to her that day, Carly became extremely upset. “I really broke down in there. It was her concern for me – she had to ask the question did I have any thoughts of taking my own life – that I realised how worried she was. I kept saying ‘I’m fine, I’m grand.’ It was only then that I realised maybe I’m not fine.” She agreed to go on mild medication and was referred for counselling.
When there is a cancer diagnosis or treatment, the whole family should be taken in and let speak to somebody. It should be included in the treatment plan. How can we look after them if we can’t function?— Carly, mother of Aoife
“I wasn’t really sleeping. I’d go to bed, pick up my e-reader and at five o’clock in the morning I would still be on my e-reader and maybe getting an hour’s sleep before I was getting up to get the kids out.” She couldn’t say now what books she read; it was just “anything to get out of my head – stuff that was just not to do with me”. She didn’t want to take sleeping tablets in case Aoife spiked a temperature during the night.
“Definitely the best thing I ever did was go for counselling,” says Carly, who went privately while waiting for her first public appointment. She reaped benefits from counselling very quickly. “I suppose it was because I was talking to someone who wasn’t my family and I wasn’t concerned how I was going to make them feel.”
A counsellor introduced her to mindfulness. “It taught me ways to relax and take a little step back, just for me, even to help me fall asleep at night; little techniques and I still use them.” She now believes that if mental health supports, such as counselling, had been given to the family in the first round of Aoife’s treatment, she might have avoided the big breakdown years later.
“When there is a cancer diagnosis or treatment, the whole family should be taken in and let speak to somebody,” she suggests. “It should be included in the treatment plan. How can we look after them if we can’t function?”
Carly is one of a number of parents who have contributed to a podcast series, Gold Ribbon Conversations, named after the international symbol of childhood cancer. Created by the charity Childhood Cancer Ireland (childhoodcancer.ie) and hosted by Sinéad O’Moore, the conversations are a sharing of families’ experiences in the fallout from a child’s cancer diagnosis, through treatment, survivorship and, for some, bereavement.
Every week in Ireland, six children or young people aged 0-24 are diagnosed with cancer. The shock of such news not only has a huge impact on parents, siblings and grandparents, says the manager of Childhood Cancer Ireland, Laura Cullinan, but also on the wider community, the child’s school and friends.
“It affects everybody,” she says from her first-hand experience of the illness of her daughter, Isobel, now aged 10. “She was diagnosed at 21 months with a kidney tumour and she relapsed just two weeks after her third birthday with tumours in her lungs. She had to start her journey all over again.” It proved to be a bigger battle the second time. After eight months of chemotherapy in Crumlin, 16 doses of radiation in St Luke’s, the tumours were still there, so doctors operated to remove part of her lung and take away the tumours.
There was a further scare last year, when she had to have a tumour behind her shoulder blade removed. This time they were blessed, she says, that it turned out to be benign but it brought the whole family back to earlier years and the fright of how life can change so quickly. Laura believes the Gold Ribbon Conversations are hugely important because they “normalise what we all feel” and also raises awareness of the outside world that it’s not all finished when the treatment is completed.
“I don’t believe it is ever over in one respect,” says Laura, who has two other children aged 15 and nine. Once a child has finished chemotherapy, they are on to the wait and watch stage. “That is exceptionally isolating; people don’t understand that has its own fears, its own issues. You are picking up the pieces that you didn’t have the chance to do when frontline treatment was going on.”
It is at that point many parents are at their most vulnerable, she agrees. “That’s when you feel even more isolated. You don’t fit into your old life and you are trying to find your feet in your new life.”
You have been in a hospital bubble, which for this Roscommon family, was either CHI Crumlin or Mullingar hospital as their shared care centre. When you are finally told “this child is fine, go home”, suddenly there is nobody there to help, she says.
“Your confidence is gone as a parent. You’ve had somebody telling you what you are going to do, at what time of the day. If your child gets a temperature, what you’re doing to do. You’re living in fear.” Meanwhile, the sick child and the parent who has been away with them, often for long stints of hospital treatment, need to reintegrate with the rest of the family.
Life as you know it has been rocked to the core. “When your child is in treatment you become ‘the parent of…’ You are no longer yourself, an individual. I came out going, ‘I don’t know who I am.’ That’s for any mum.”
If we can make stronger families, we can make stronger futures for our kids— Laura, manager of Childhood Cancer Ireland
She believes “peer support is what keeps you sane; you know you’re not alone”. Isolation for families coping with childhood cancer was exacerbated by the Covid-19 pandemic, which disrupted the natural peer support among parents with children in the St John’s cancer ward in Crumlin.
Childhood Cancer Ireland trains peer supporters, of whom she is one. “We do not give any medical advice, it’s only emotional support.” The charity started as a movement in 2013 when a group of parents in St John’s Ward organised a Light Up Gold walk to raise awareness and funds for the hospital. Laura became involved after Isobel’s first diagnosis the following year, when it was decided to form a charity to advocate for families and to see what supports and services it could offer.
The childhood cancer sector is very fragmented, she says, and Childhood Cancer Ireland is keen to collaborate with others. Last August it merged with an organisation for survivors of childhood cancer, CanCare4Living.
“Survivorship starts the day they walk out of St John’s Ward and part of that is their emotional wellbeing and how they are coping. If we can make stronger families, we can make stronger futures for our kids.” There is not enough psychosocial support for families, she says. Supports may be good while you are in the Crumlin hospital “bubble” but it’s difficult for those in rural Ireland who don’t have constant access to these.
Louisa McEleney of Baldoyle, Dublin 13, has been acutely aware of the importance of caring for her own mental health since her son Alex, now aged 15, was diagnosed with leukaemia 5½ years ago. He then relapsed not once but twice.
“You name the therapy, I have had it,” says Louisa who has made sure the rest of the family – her husband Peter, Alex and his two siblings Lauren (18) and Ava (14) – have had therapy too if they needed it, much of it on a private basis thanks to extended family and friends fundraising for them in the community. “Thankfully, because of that support, our mental health is intact,” she says.
The bleakest time was probably after news of Alex’s second relapse last March. “In hindsight the first relapse, treatment wise, was worse but the second relapse, for success rates and statistically, that was scariest,” says Louisa. It was the only time she was worried about Alex’s mental health.
“I was probably at my lowest point at that time,” agrees Alex. “In my first journey there were low points and the first relapse was hard as well.” He had a bone-marrow transplant after that. Then, one year later, a series of conflicting test results before confirmation of a second relapse made it very hard on all of them. “It was a mental drain for me but I think it was worse for Mam and Dad.”
They had not really thought about his mortality the first time, says Louisa, “maybe a little bit the second time but the third time you think, oh my God, is this going to take my child?” Alex says he thought about death after the first diagnosis and then again when he was very sick after the first relapse.
They manged to take turns, “amazingly”, in having low moods: Somebody has to hold each other, you can’t all crumble together— Louisa, Alex's mother
After the second relapse, Alex was the first adolescent to go on “revolutionary” Car-T cell therapy to treat acute lymphoblastic leukaemia that was introduced in Ireland last April. T cells are blood cells of the immune system that protect from “foreign invaders” including cancer. As the CHI website explains: “Chimeric antigen receptor T cell or Car-T therapy, harnesses the body’s own T cells and ‘installs new software’ that redirects them to more effectively target and destroy cancer. Unlike standard pharmaceuticals, it is a ‘living drug’ that can grow, expand and form memory and potentially protect the patient lifelong.”
There was a lot of positive energy on the medical side around this new treatment, says Louisa, which helped to keep the family’s spirits up. “My husband was saying to me on my bad days ‘this is going to work’ and I was saying to him on his bad days ‘this is going to work’.” They managed to take turns, “amazingly”, in having low moods, she remarks. “Somebody has to hold each other, you can’t all crumble together.”
Alex was in hospital for three weeks for the Car-T treatment last May. He didn’t lose his hair, he didn’t get mouth sores, temperature spikes or have a feeding tube, she says, “all those awful things that were part of the second journey”.
Six months on, he is “flying it”. He is in transition year and, as part of an enterprise programme, he is designing a booklet to tell parents about all the charities that can help “because we didn’t know where to begin”, says Louisa.
Meanwhile, despite all the positive signs, the McEleneys are still living with uncertainty. Louisa, who currently feels she does not have the mental capacity to return to her teaching job, is very aware that this is a vulnerable time.
“When you’ve finished treatment, you breathe out and you get sick yourself if you are not looking after yourself because you have been in ‘fight, flight, freeze’ mode for five years. Post-traumatic stress is never mentioned and it is mind blowing. There is so many things happening in the minds of parents and children – are we through this, are we not through this, how have I survived.”
Everybody moves on and everybody forgets, which is perfectly normal, she acknowledges. “They say ‘Alex looks great, life goes on, you must be so happy,” while they are only starting to process what they have been through as a family “and that might take another five years. There are so many conversations to be had around this,” says Louisa who, along with Alex, contributed to one of the podcasts. “But we are very lucky,” she adds, “at the end of the day, he’s here, that’s the main thing.”
Mark McQuillan: In his experience, men don’t talk enough about their emotions
There were times when Mark McQuillan would pull the car into the side of the road during his daughter’s treatment for cancer and have a good cry, asking “Why? She’s only four.
“I didn’t want to do it in front of the family,” he says. He felt responsibility as “the protector” of the whole family unit going through it “and I still do”.
Aoife had entered the world as a very vulnerable, premature baby after his wife, Bridget, developed a rare, life-threatening pregnancy condition known as Hellp syndrome. But they thought they had put that time of intense hospital treatment behind them until, just after turning four, Aoife looked very unwell one day and complained of stomach pains.
What was initially suspected to be kidney stones, turned out to be stage two cancer, Wilms’ tumour, that needed to be removed. Six months of chemotherapy followed.
Now aged five, Aoife is finished treatment and doing well, he says, “but the reality is you are living with cancer, as it is always in the back of your mind”. The couple, who live in Lucan, Co Dublin, also have a younger daughter, Orlagh (three).
In his experience, men don’t talk enough about their emotions. While he considers himself very open, and he was one father willing to contribute to the Gold Ribbon Conversations, he still thinks he sometimes holds back more than is good for him. But he is conscious of his mental health and “the good thing with me is that I can talk to my wife”. Other families might be in different circumstances when a child-cancer diagnosis hits, he points out.
He and Bridget managed to keep their jobs during Aoife’s treatment, with both taking additional time off. “You have to work, you can’t afford not to,” he points out. “We shared the load as such.”