‘The first thing I thought of was, I can’t play soccer any more ... I wanted to play for Ireland’

The moment Fiona Murray got a call from a woman introducing herself as an oncologist in CHI at Crumlin, she knew that the tumour in her nine-year-old son’s heel had been diagnosed as cancerous.

The mother of two boys was working in Cork that Wednesday, April 12th in 2017, when she took the call and had to drive home to southwest Co Wexford to break the news to her youngest son. It was the hardest thing she has had to do as a parent.

“Telling Aidan that day he had cancer and his first reaction was ‘am I going to die?’ As a parent you don’t want to hear those words. All I could say to him was ‘we are going to fix you’.” She and her husband Anthony, who have one older son, Jacob, were asked to bring Aidan to meet oncologist Dr Jane Pears at the Crumlin hospital, Dublin the following day.

That consultation, one day before Aidan’s 10th birthday, brought further devastating news. “It was going to be an amputation below the knee, which was a massive blow to Aidan because he was the sporty one in the house,” says Fiona. “That was awful. You go up there knowing it’s cancer, but we just weren’t expecting a second blow.”

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It was explained that osteosarcoma, an aggressive cancer, had already destroyed Aidan’s heel. To get a clear margin on the leg, to make sure the cancer was not going to travel, the most effective option was amputation.

Six years later, recalling the moment Dr Pears told him what they needed to do, Aidan (16) says: “The first thing I thought of was, I can’t play soccer any more. I wanted to play for Ireland and the only thing I thought of was that I could no longer play for Ireland.”

Aidan was in fourth class at the time, and a keen player with Campile United in Co Wexford. He got a kick in the heel while playing soccer and the soreness persisted over a couple of days. His mother brought him for an X-ray but was told it was fine.

The soreness continued over the next two weeks and started to swell, so she brought him to University Hospital Waterford. After another X-ray, an MRI was performed, which showed the tumour and he was referred to Crumlin for a biopsy.

After the cancer was diagnosed and a treatment plan outlined, Aidan had two rounds of chemotherapy over the summer of 2017 before the amputation was done in August. Counselling was offered in Crumlin, but it seemed to be geared towards younger children, says Fiona, and he didn’t enjoy it.

“It was very childish,” says Aidan. Reflecting on his state of mind in the lead up to surgery, he says: “I was kind of waiting for disaster. You don’t know what’s going to happen, what it’s going to feel like – you’re going into it blind.”

Months of further chemotherapy followed and he struggled initially with an ill-fitting prosthetic leg, using crutches or a wheelchair. After a lung operation to remove “grit”, which proved not to be sinister as first feared, Aidan got a new prosthetic.

“I noticed it fitted him so much better,” says Fiona. “I said to him ‘try and walk’ and he did and he never looked back.”

‘Payback toxicities’

Aidan is among the 82 per cent of children, adolescents and young adults (CAYA) diagnosed with cancer in Ireland since 1994 who were still alive by 2020, the latest report by the National Cancer Registry published in August shows. Increased survival rates in CAYA cancer is a success story that Owen Smith, professor of Child, Adolescent and Young Adult Oncology, Trinity College Dublin, is keen to share, during this, childhood cancer awareness month.

However, “we are curing these kids and adolescents and young adults at a cost”, he points out, referring to the “payback toxicities” of treatment. Side-effects, be they physical, psychological or social, could affect almost an entire lifespan. “We really need to be smart how we treat these patients going forward.”

Having missed the guts of a school year, Aidan returned to his primary school towards the end of fifth class and picked up the reins of his life. But it was another four years before he accepted an invitation to Barretstown in Co Kildare, which runs therapeutic camps and programmes for children affected by serious illness. Smith, who is medical patron there, says the Barretstown “treasure trove” is a key pillar in comprehensive cancer treatment and few other European countries have such a facility.

“The importance of these therapeutic recreation programmes as part of a child’s recovery journey cannot be underestimated, with children increasing their confidence, self-esteem and independence after experiencing the programmes provided by Barretstown.” We know that psychosocial wellbeing translates into better outcomes, he says.

Initially, Aidan was not interested because he felt that Barretstown was not for him. “I don’t know why,” he says. He eventually went in July 2022, on the urging of a fellow cancer patient in St John’s Ward in CHI at Crumlin, who he had remained friends with but hadn’t seen since the end of treatment. The two were able to meet up again at Barretstown and “it was the best thing I ever did”, says Aidan. It was so good, he returned last June.

There is an unspoken bond between camp participants, who come from different countries. You’re immersed in activities and, without your phone, you have to talk to people, he says. “It is calming and soothing just being there. It’s a break from reality.

“It gave me confidence. When you go up there and wear shorts, no one looked at you; no one stared at you; no one talked about you.” When he came back after the first visit, Fiona was pleasantly surprised to see he was happy to walk around their home village of Ballycullane, outside New Ross, no longer afraid to have his prosthetic leg showing.

‘Quality of survivorship’

We are two-thirds through the timespan of the National Cancer Strategy (2017-2026), which for the first time recognised adolescents and young adults as a distinct group of patients. One of its recommendations was a new post of clinical lead for children and adolescents, to which Smith was appointed in 2019. He set up a group consisting of not just doctors, nurses and other healthcare professionals, but also patients, parents and NGOs, to produce a framework for the care of adolescents and young adults with cancer.

“AYAs with cancer are a diverse group as defined not simply by their age and distinct biology of their cancer, but in terms of the challenges they face with regards to adequate access to age-appropriate oncological care, representation on clinical trials, short- and long-term health and psychosocial issues, that include fertility considerations, transition to survivorship care, psychosocial support, adherence to treatment difficulties and other dilemmas and problems exclusive to this group of patients,” he wrote in the foreword.

“The quality of survivorship is really, really important,” he says. It is why he is intent on developing a CAYA cancer survivorship research hub at the Trinity St James’s Cancer Institute. Funded mostly by philanthropy and also the National Cancer Care Programme, “it will cost €3-4 million and will really drill down into survivorship issues”. This will include looking at long-term side effects of newer treatments, psychosocial aspects and health planning.

“It is a brand new form of medicine because we have these survivors,” says Smith. Of the 8,974 children and adolescents diagnosed with cancer in Ireland in 1994-2020, 7,354 (82 per cent) are still alive. “They are fantastic statistics.”

However, many of these young people continue to have different types of issues “and we need to comprehensively address these going forward”. Although Ireland has come from a low base, he believes that by 2026, “we will be as good, if not better, than everybody across the European Union” in regards to care of CAYA cancer patients.

Immunotherapy is a “massively growing” field of treatment, although Ireland got to it late, he says. Car T therapy involves taking the patients’ immune cells, known as T cells, and genetically modifying them to locate and destroy the cancer cells more effectively. It is used predominantly in the treatment of acute lymphoblastic leukaemia and also in non-Hodgkin’s lymphoma.

“We have done 11 of these children in Crumlin with Car T – in the past practically 80-90 per cent of these patients would be dead by now and they are all alive. It’s remarkable.” They would like to be able to treat more patients with this but “it’s really expensive – around 350,000-400,000 euro a pop”. That is why hospital service delivery needs to be fused with universities, he says, because if they work with Car T developed in universities, the price comes down to a quarter of that. “Academic healthcare systems are the way forward.”

The genomics of cancer is the final frontier as “that is where we are going to find the holy grail – that is where we are going to turn off cancer’s path by finding out what is going on”. We now have the tools, with artificial intelligence (AI) coming in to crunch all the molecular genomic data. “It’s going to be brilliant,” says Smith who, in his mid-60s, is not contemplating retirement any time soon. “My biggest dream as a young haematologist working in Great Ormond Street was to develop a vaccine against leukaemia. That would be fantastic.”

It’s now an achievable goal for the global scientific community, which has already delivered one – the HPV vaccine – to prevent cervical cancer.

Agricultural, rather than medical, science is where the interest of Aidan Murray lies. He has started his Leaving Cert year in Abbey Community College, Waterford, and agrees that, after what he has been through with cancer, he feels more mature than most 16 year olds.

“The thing that I noticed most in him is that it made him a really good judge of character,” says his mother. From all his interactions with numerous hospital staff, he learnt to get the measure of them as individuals. “That has made him more grown up, in that he can read people and he knows how to interact with people.”

What Fiona has taken away from the whole episode as a parent is the importance of trusting your instinct when it comes to your child. She doesn’t know if the tumour didn’t show up in the first X-ray of Aidan’s heel, or if it was missed. Yet a fortnight later, after she persisted in seeking medical attention for him, they were told there was a tumour there and it had eaten away the heel bone.

She would urge parents who, like her, sensed something is not right, not to be fobbed off, “because time is everything with this horrible, stupid disease”.

Child, adolescent and young adults cancer by numbers

369 cases of cancer diagnosed per year in 0-24 year olds

87 per cent survival rate (observed over five years) for all cancers in children (0-15 years) diagnosed in 2011-2019, up 5 per cent from those diagnosed in 2002-2010

90 per cent survival rate (observed over five years) for all cancers in adolescents and young adults (16-24 years) diagnosed in 2011-2019, up 3 per cent from those diagnosed in 2002-2010

1.3 per cent increase in incidence rate per year of all cancers in 0-15 age group in 1996-2020

1.1 per cent increase in incidence rate per year of all cancers in 16-25 age group over same period

17.3 per cent decrease in incidence rate per year of melanoma in women aged 16-24 in 2014-2020

Source: National Cancer Registry Ireland

Barretstown by numbers

1994 was the year Barretstown was founded in Co Kildare by Hollywood actor Paul Newman for children and their families affected by serious illness, modelled on his renowned Hole in the Wall Gang Camp in Connecticut

100,000th camper was welcomed there on September 1st this year. She was April Banks (10) who is being treated for neuroblastoma

17,000 children to be supported through therapeutic recreation camps and programmes in 2023

25,000 children to be cared for annually by 2028 is its current target

2 per cent of the charity’s funding comes from Government

€100,000 is the fundraising target of national appeal launched in September. See https://barretstown.org/pledge/