Sarah O’Reilly still does not know what possessed her to drive her 14-month-old daughter straight from a relatively unconcerning GP appointment about a suspected cyst to a paediatric hospital’s emergency department.
Was it a mother’s intuition or her own medical training, or perhaps a combination, that put her on the road from Co Meath to Dublin’s Children’s Health Ireland (CHI) at Temple Street that June Monday morning last year?
Considering her electric car didn’t have enough charge to complete the round trip, her phone was low on battery, she had no purse with her and just one nappy, there were lots of reasons she might not have gone.
She had not even told her husband Simon what she was doing.
RM Block
“I suddenly just felt this urgency to everything,” she says. Yet, having worked as a hospital doctor, “you don’t want to be that person who’s hysterical in A&E and everyone’s going, ‘oh, for God’s sake, does she not know what a simple cyst looks like?’.”
But when a junior doctor came and looked at her daughter, Fióna, and said he was going to get his consultant, “it was from that moment I went, ‘oh crap…’.”
Within hours, Sarah, not having mentioned her medical background, was entertaining her daughter while an ultrasound was being done. “I could fully see the screen and I knew exactly what I was looking at: that’s a raptomyosarcoma [cancer of soft tissue] in my child’s stomach.”
Yet, she could not react and did not want, in that moment, for the staff to know that she knew. It was like there was a complete disconnect between her as a mother and as a former doctor who now works in medical technology.
“I had this thing in my head that [said] until somebody tells me, it’s not real. I couldn’t make what was on the screen match up with the little girl sitting on the table,” she tells The Irish Times, in an interview to mark this being Childhood Cancer Awareness month.
Raptomyosarcoma is fairly rare among the nearly 400 cases of cancer that are diagnosed in those aged 0-24 years each year in Ireland. This type of tumour in the soft tissue is most likely to develop before the age of 10 and is more common in boys than girls.
Sarah and Fióna stayed that night in hospital as an MRI was to be done the following day. But, in the morning, when there was no space on the scan list, Sarah asked to go home to Duleek and come back the next day. With no diagnosis yet, she felt she could not say anything to family, except that Fióna would be returning for more tests. She did tell Simon they needed to prepare themselves for the possibility that something might be wrong, but he, with characteristic optimism, thought that unlikely.
Fióna had her MRI and biopsy the next day.
Sarah, who was trained on how to deliver bad news, knows that the way she was then told of the results was far from best practice.
“It wasn’t a lovely way to find out that your daughter has cancer, just in a hallway with other parents around and nurses going back and forth. But it was confirming what I already knew and now I could at least tell people. It wasn’t all on me any more and I wasn’t losing my mind.”
Medically, she stresses, “everything was managed impeccably in Fióna’s diagnosis”. When staff are so focused on a sick young patient, “the impact that it has on the parent can sometimes be secondary in people’s minds – and that’s fair enough”.
But when Simon came in thinking he was taking them both home, Sarah went into doctor mode and requested a private room where she drew on her training to break the bad news. A bed in CHI at Crumlin had been secured and on the drive over that Wednesday, Sarah read in the transfer pack that the scan showed Fiona had a 10-centimetre mass in her abdomen.
“When she was only 80cm tall, if that, it was a big thing sitting there.” Sarah was also horrified to think it might have been growing since the previous April, when an unusual bleed in her daughter had been flagged by creche staff.
At the time, a GP took a swab, on which an infection was detected and Fiona was treated for that. They thought that’s all it was but, in hindsight, the infection was a “complete red herring”.
At Crumlin, consultant oncologist Cormac Owens and his registrar were reassuring with a sense of “we’ve got this”, though warning that treatment would be hard. An added remark about the likelihood of their daughter playing camogie for Duleek when she was 12 conjured up a vision that stuck in Sarah’s head. “It got us through some tough times ... that it was all for a cure and we were working towards that. I know not all families get that.”
They had the ordeal of Fióna getting a nasal-gastric (NG) tube fitted before chemotherapy treatment started 24 hours later. Sarah remembers sitting in St John’s Ward in Crumlin that Friday and wondering how they were going to explain to her what she had been through when she was older. What will be a huge help is the Beads of Courage programme, she says, under which children are given colour-coded beads to signify every procedure and treatment they receive along the way.
Fióna’s initial treatment plan was for six, three-weekly cycles of chemotherapy. It was expected she would be in hospital for two nights at the start of a cycle and then attend the day ward once a week. But nothing proved straightforward.
It’s very hard to switch off that sense of hypervigilance over a child who has been treated for cancer.
“At least once in every one of those six cycles, she had an emergency admission to hospital and she’d be in for two nights, antibiotics and all of that.” In the first cycle she developed a rare liver complication.
“We had to bring her to Drogheda, which is our closest hospital. She ended up being in for a good while and had to be transferred back down to Crumlin because she was too sick.”
Ironically, the O’Reilly family had moved to Duleek from their Dublin house “in the shadow” of Crumlin hospital, just 10 days before Fiona was diagnosed. Her older brother Oisín, three at the time, not only had to cope with a new home and a new creche but then with his mother and sister disappearing for a week, all within days.
When cancer is detected in any child, adolescent or young adult, there is a devastating impact on the entire family. The first time Sarah contacted the parent- and survivor-led charity, Childhood Cancer Ireland (childhoodcancer.ie), was to inquire about play therapy for Oisín, as it was clear, through changed behaviour, that his sister’s illness and his parents’ upset and tiredness were affecting him. She will never forget that not only was the therapy organised, which he loved, but she was phoned to see if there was anything the charity could do for them as parents.
With all the appointments, along with emergency, unscheduled visits, the O’Reillys decided to return to their old home, glad to be close to the hospital and temporarily back in a familiar community. They set their sights on the end of Fióna’s six months of intensive treatment, believing life would become easier for all of them once she moved on to maintenance chemotherapy in January.
But as soon as the maintenance treatment started, “bang, she’s back in [to hospital], sick. I think it was three Fridays in a row. So it was just such a false kind of finish line. We struggled with that; I definitely did.”
Sarah realised she was burnt out. It was at this point, she says, Childhood Cancer Ireland was the saving of them as a family.
At no stage should parents think they have to cope alone with the complex fallout from a child’s cancer diagnosis and treatment, says clinical psychologist Dr Mairead Brennan, director of psychosocial services at Childhood Cancer Ireland. They can be paired up with another parent who has been through something similar for informal “buddy” support and/or avail of clinical services.
There are also peer, online and in-person gatherings, along with gold-ribbon podcasts that, Sarah says, never fail to highlight something that she too had experienced. For instance, the dilemma of advocating for Fióna among pressurised healthcare staff, while wanting to be liked.
“I was obsessed with people liking Fióna; I really wanted the nurses to like her because I felt, well, if they like her, they’re more likely to come in and do her meds on time.” Or scans would be organised quicker.
She too wanted to be a people pleaser, believing this might earn her child that extra bit of attention. But then if she said a dressing needed changing, or advised someone on the way a procedure might work best for Fióna, she would worry that would turn staff against her. Sarah believes nobody can understand what being a “cancer parent” is like until they are one.
“I found it really hard to go from working full-time to suddenly not.” She was also plunged back into an environment that she had chosen to leave as a professional, feeling she was not cut out for it.
Yet it was also difficult, she acknowledges, for Simon, a mechanical engineer, who did not have the “luxury” of stopping work, while also suffering the same sleepless nights. Unlike her, he also had to get his head around medical language and the way the health system works. Although they had great support from extended family, she is very glad both of them could avail of counselling. “When we’re both going through the same thing, you can’t lean on each other as much,” she says. Sharing worries about their daughter was “putting fuel on each other’s fire. You do need that outside person, to vent to or to let the ‘crazy’ out a little bit.”
Fiona had her last chemotherapy dose on July 8th last, but that felt like another false finish-line when her parents learned she would have to keep her NG tube and Hickman line in, and would need to return for an MRI every three months, which requires a general anaesthetic.
The end of treatment can be particularly challenging for families, says Brennan, just when they might have expected life to get better. But it is only then they may realise what they have been through and how worrying will continue long beyond treatment. People around them are usually well aware of the need to offer support through the intense phase of hospital care, she says.
“Once treatment is over, everyone almost takes a step back feeling that everything is behind them now. But that’s a time when then can be a huge sense of isolation.”
Parents are probably struggling with ongoing fears but no longer have the same access to their child’s medical team. “It’s very hard to switch off that sense of hypervigilance over a child who has been treated for cancer. Every appointment might bring up a new challenge.” In addition to the worry of reoccurrence, there can be concerns about the possible, long-term, physical and psychosocial side effects of treatment.
“Everyone’s saying you must be so delighted but it’s this dichotomy, you’re delighted but you’re exhausted.” There is excitement at moving on to the next stage, yet it is only then that profound fears and worries may come up to the surface.
Sarah would encourage any family dealing with the illness to contact Childhood Cancer Ireland as early as possible. They may not know themselves what could help at that time – or in the future. “You’re all trying to come out of this unscathed,” she says, adding, “to be honest, the one who’s probably going to come out the strongest and the least scathed is Fióna.
“She roared at me the whole way through Tesco today because I wouldn’t allow her to open up a packet of ham. She is brilliant and she’s doing everything she’s supposed to do. It’s like it never happened.”
