When four-year-old Alex Burke looks out the car window during an outing and asks “Why are we on the motorway?”, only his parents understand what a loaded question that is.
The little boy associates the fast road and blue signage with countless journeys he has made from their Co Galway home in Loughrea to the children’s hospital in Crumlin, Dublin, since being diagnosed with cancer before he was even 18 months old. Yes, toddlers get cancer too. Back in March 2022, Alex was off his food and waking nearly every hour at night.
Over the course of visits to the GP, out-of-hours doctor and the hospital emergency department, his parents, Daniel and Michelle, were told “it’s viral”. There was nothing to be prescribed and it was a matter of waiting it out while treating the symptoms. But when paracetamol or ibuprofen every four hours were not keeping his temperature down and Alex started to refuse even his bottle, a GP advised Michelle to bring him back to the emergency department and armed her with a letter outlining tests that should be done.
“As soon as the ultrasound was pretty much turned on, they could see the tumour – it was large,” says Daniel. “It was in the stomach area, below the ribs.” Within hours, Alex and his mother were in the ambulance on their way to CHI at Crumlin, which is the national child and young adolescent cancer treatment centre.
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A biopsy on an additional tumour that was removed straight away from the lymph nodes in his neck confirmed it was neuroblastoma. Daniel and Michelle, who was pregnant with their third child, Dylan, at the time, were given an outline of expected treatment over the next 18 months. It plunged them and their older child, Kayla, into a life that had to revolve around Alex’s medical care, both in hospital and at home, with all the emotional, logistical and financial challenges that would entail.
Childhood cancer is rare but that is no consolation to the families of the nearly 200 children aged under 16 in Ireland who are diagnosed with the disease each year. In addition, about 70 teenagers aged 15-19 get that bad news annually too. Diagnosis is only the start of a long road; nobody can predict with certainty when they might reach the finish line nor what that might look like. More children than ever are surviving cancer, with about eight in 10 likely to be cured, but their long lives of survivorship ahead are still relatively uncharted territory.
September is Childhood Cancer Awareness Month, and the parent and survivor-led organisation Childhood Cancer Ireland will launch a new peer-support network on September 9th. Half a dozen specially trained parents of childhood cancer survivors will be available to be matched up with parents whose children have been recently diagnosed, to offer information and support.
Jenny Forde was repeatedly reassured in summer 2021 that the lethargy, headaches and nausea her three-year-old daughter, Marlie, was experiencing were nothing more than a standard childhood illness. “I brought her to the doctor a couple of times and then we ended up attending A&E.” But being told it was the vomiting bug, and then gastroenteritis, “didn’t sit right with me”.
Two weeks later, when she could not rouse her daughter from a nap at home in Artane, Dublin, Forde called an ambulance. By the time the paramedics arrived, Marlie was awake and talking and they told her mother she should be fine, but “thankfully I pushed to get in there that day. By the time we got into Temple Street [hospital], things changed very, very quickly because her pupil had blown. It was completely dilated on one side.”
A CT scan showed she had a tumour on her brain. Within hours Marlie went into emergency surgery. Forde credits neurosurgeon Kieron Sweeney, who removed the tumour, with saving her daughter’s life. She and Marlie’s father, Craig, were told afterwards it had been touch and go. Although they were delighted to watch their daughter recover so quickly from the operation, they had a torturous wait of nearly a week for the result of the tumour biopsy.
“I wanted to believe that it was benign,” says Forde, “and I think that’s how I survived that week. I could not look down the other avenue: ‘What if it’s cancer?’ When the results came back that it was cancer, we were completely floored again.” Marlie was only 3½ “and still had a soother”. It was a grade-four embryonal tumour with multilayered rosettes (ETMR), and their daughter faced a very tough preventive programme.
“It’s such an aggressive, rare type of brain cancer that we had to do everything that we could to stop it from returning.” In that first month she had five brain surgeries in Temple Street hospital before starting chemotherapy in September 2021 in Crumlin, “where we basically lived for about six months”, says Forde. “Any time we went home she would become very unwell very quickly because the chemotherapy was so tough on her little body.”
The litany of treatment Forde reels off – so many rounds of chemo, stem cell collection, two bone marrow transplants and radiation – would be all too familiar to any parent in her situation. She recalls the bittersweet reassurance of seeing Marlie regain her joie de vivre after each round of chemotherapy, knowing it meant it was time for the next one.
It is only in the weeks and months afterwards that parents realise: this is ongoing
— Mairéad Brennan, director of psycho-social services at Childhood Cancer Ireland
Strings of beads that Marlie wears proudly are testament to everything she has been through. Each bead is coded by colour and size to signify every health intervention, from blood tests and injections to surgery, chemo and radiation. These Beads of Courage, a US-founded programme that Childhood Cancer Ireland introduced here, help children to record and tell their stories to others.
Marlie had to go to Germany for 30 daily sessions under general anaesthetic of proton bean therapy, a very precise form of radiation that is not available here. The HSE funds the therapy but Forde pays tribute to The Gavin Glynn Foundation, which assists with the logistics and costs of travel and accommodation for children’s cancer treatment abroad. John and Jayne Glynn made such trips with their son Gavin, who died of cancer in October 2014 at the age of five.
On return from Germany, Marlie started a year of maintenance oral chemotherapy at home before she got to ring the “end of treatment” bell in Crumlin’s St John’s cancer ward on June 15th, 2023. As joyous a milestone as that is for any family, it does not sound the end of parental anxiety.
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There are conflicting emotions when a child’s treatment is completed, says clinical psychologist Mairéad Brennan, director of psycho-social services at Childhood Cancer Ireland. Absolute relief that it is finished is tempered by fear of cancer recurring. While they and those around them might think “when it’s over, it’s finished”, she says, “it is only in the weeks and months afterwards that parents realise: this is ongoing”. They may only then start to process what has happened and feel very isolated after frequent interaction with their child’s clinicians has stopped.
“It’s quite scary that the responsibility is back on them to almost navigate that recovery with their child,” says Brennan. Childhood Cancer Ireland saw a gap in supports and runs workshops that address and normalise these issues. Parental self-care is vital as part of recovery because that is going to be a protective factor for the whole family.
“While we are available to families all the way along, sometimes during treatment – especially during early treatment – it is so full-on that they don’t have time to do any of this,” she says. “They have good support within the hospital as well.” It can be six months to a year after a child’s treatment finishes when parents say they know they should feel really grateful but they are still struggling.” Childhood Cancer Ireland also offers access to play therapy for a child, or psychotherapy for a teen, who has, or has had, cancer.
Three years on and counting since the brain tumour was removed, Forde still watches her daughter like a hawk. “I’m always looking out for everything. I’m always ready to go. I think that fight or flight probably hasn’t left me.”
As for Marlie, who is now starting junior infants, “she’s a big ball of energy, full of fun. We are incredibly lucky to have her here.” Treatment side effects include permanent hair loss on one side and a lack of high-frequency hearing but, adds Forde, that is “such a small price to pay for her life”.
Alex Burke is about to start preschool but he is still adding to his collection of 1,000-plus beads. His mother started to collect them when he was too young to understand, but now he strings them himself. Treatment has been complex. There was chemotherapy, and then surgery to remove the main tumour on the adrenal gland at the top of his right kidney. Daniel recalls a particularly horrible time after that, when his son was being prepared for stem cell treatment and had to be in strict isolation, with his parents gowned up at all times.
“He was so young; he still wasn’t really talking. He said my name over and over – he called me ‘Daddo’. He’d just ask myself and Michelle to sit beside him and he’d be constantly saying our names because he had no other way to tell us how he was.”
However, Alex rallied quickly and defied the odds to be home for Christmas 2022. But a scan was to show continuing activity on the tumour site. Further surgery was required before 24 rounds of radiotherapy. Although Alex was running around happily a scan showed that, even during radiation, there was tumour growth. An ALK mutation had developed and Alex now had refractory cancer – meaning, resistant to treatment.
The hospital knew a new drug to counteract this mutation had shown positive results in testing. When they could not get Alex on a clinical trial for it, a “compassionate plea” was made to Pfizer, who granted access to the ALK inhibitor. This, combined with immunotherapy and more chemotherapy, resulted in Alex having his first clear scan last November.
He has had two more clear scans since, but Daniel knows it will be another four, long, anxious years before their son could be considered cured and “we can breathe again”. Alex will soon start two years of oral chemotherapy at home, bringing to an end their routine of going to Crumlin every three weeks for five days of outpatient chemotherapy. They will all be glad to be seeing less of that M6 motorway.
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