Flying together: On board with families travelling for treatment

This impulse led Niamh — an Aer Lingus senior cabin crew member — to set up a 100-strong network of volunteers to support families travelling through Dublin Airport for overseas cancer treatment for their children.

The story began in the early summer of 2019, when Josh woke up with a swelling in his neck. “I thought it was an allergy,” says Castleknock-based Niamh. “The GP said it was a cluster of swollen glands.”

Antibiotics did nothing and the GP sent Josh for ultrasound, “to rule out anything else”. Biopsies followed. 

“On the June bank holiday weekend, we were given an awful diagnosis: Malignant rhabdoid tumour. He had 20% chance of survival,” says Niamh, recalling that it was her husband, Mark’s birthday.

“We were looking at our bouncing three-year-old: The play therapist was helping him make a birthday card for Mark. He was full of beans; we couldn’t comprehend how sick he was. We were told chemo mightn’t work, but the consultant said he wouldn’t take Josh on if he didn’t think he had a chance.”

High-dose chemotherapy reduced the tumour significantly and the next step was surgery to remove it. 

“Surgery was risky: The tumour was close to arteries and vital organs,” says Niamh, whose other son, Liam, is 12, while Josh is eight now. “So it was really scary, but they got 95% of it, which was excellent. We were on cloud nine. We were only dealing now with 5%.”

Josh’s best option was proton beam therapy: Radiotherapy that directly targets a dose of high-energy protons at the tumour. 

"At that time available only in Essen, Germany, Josh’s treatment schedule would involve a few days of consultation and tests in Essen, followed, two weeks later, by the therapy, which would take seven weeks.

“Mark had just started a new job and we also had Liam to think about,” Niamh says. “So we decided I’d go to Essen with Josh, and Mark and Liam would travel over and back. 

"My colleagues at Aer Lingus gave me one annual day off each; some more than one. It was so supportive and made it easier: Being off [work], I could focus on Josh.”

A Gavin Glynn helping hand

The family was to get further help from the Gavin Glynn Foundation, which was set up in 2015 by John and Jayne Glynn, after they lost their son, Gavin, to cancer. 

In 2011, they had discovered that their 18-month-old had a large tumour covering his pelvic area and it had spread to his lungs. After six months of intensive chemotherapy, plus surgery, Gavin spent over eight weeks in Switzerland for proton beam therapy.

The following year, after his cancer had returned, the family stayed for six weeks in Amsterdam for brachytherapy. 

And when, heartbreakingly, his cancer returned yet again — and doctors said that nothing could be done — the Glynns travelled to a Texas-based hospital for possible treatment and surgery. 

Devastatingly, post-treatment scans showed that the tumour was back and Gavin passed away in October 2014. The following year, his parents set up the foundation to support families from Ireland that are travelling overseas for specialist childhood cancer treatment.

John Glynn says: “Switzerland, Amsterdam, Texas: We had to do all this on our own, logistically. We don’t want anyone else to go through that stress. Their main focus should be their child undergoing cancer treatment.”

Since 2015, the charity has supported 276 families, including 47 so far this year. 

“Most families need to go for six to eight weeks, though treatment for children diagnosed with eye tumours is normally one to two days in Birmingham every four weeks, for anything from 18 to 24 months. The average cost of helping a family for a trip overseas is €18,000. Excluding the clinical or treatment side, we cover all the family’s expenses — flights, accommodation, living costs — and look after all logistics of travelling and living abroad.

“And if the family wants to bring siblings or a support person, we cover all their costs, too. All they need to do is pack a bag: We look after everything else.”

‘They organised everything’

When Josh was diagnosed, a colleague told Niamh about the charity. “I didn’t know I needed it until I needed it,” Niamh says, recalling ringing and explaining her plight to John Glynn.

“They organised everything: Booked the flights, organised a taxi from the airport to Essen, and booked a hotel beside the clinic. And, later, when we were staying for seven weeks, they organised an apartment 10 minutes from the clinic.

“It took the worry away. We just had to get ourselves there: A big thing in itself. You’re thinking about what to bring, trying to keep your home functioning, wondering if your child will be well enough to travel.”

By December 2019, the proton beam therapy “had done its work”, but Josh was extremely weak from ongoing, intensive chemo. “That December, we thought we were going to lose him.” Chemotherapy finally finished in February 2020, and then came covid, which “did us a favour”, says Niamh. “We were protected in our own little bubble at home. Josh got stronger. He got time to improve: To heal.”

Niamh’s desire to help other families grew stronger. “I was reared with the airline industry: My mom worked as cabin crew. Yet I found it hard, going through the airport with Josh. I thought, ‘What if you’d never flown and you were suddenly in this situation, having to travel with a sick child?’

“Travelling with Josh, people would ask, ‘Are you going on holidays?’ And Josh would whip off his hat: He had no hair by then. And, inside, I’d crumble.”

Knowing so viscerally the vulnerability of families travelling for cancer treatment, Niamh got the permission to set up a volunteer airport assistance scheme: Volunteers help when off-duty. “I didn’t expect the overwhelming amount of people who came forward: 80, then it went to 100.”

When John Glynn contacts Niamh with details of a family that is travelling — “some weeks there might be five families; sometimes just one” — Niamh messages the volunteer WhatsApp group. 

“Someone needs to be available for two hours,” Niamh says. “They meet the family; assist them with check-in. Some need wheelchairs: We sort that. We’re in uniform, which makes it easier to get things done. We fast-track them through security: That can be a worry for families bringing medication. We support them through it.

“One volunteer did the mini-marathon, raised funds, so we bring families for coffee, mind their bags if they want to do something in the airport, bring the child to watch the planes, so parents get a few minutes together.

“We bring them to the sensory room, if infection is a worry. I also email inflight services to explain we’ve a family travelling: Can they board a bit early?”

Mother of three and senior cabin crew member Nuala Byrne is a volunteer. 

“When Niamh messages, if I’m free, I say, ‘Yes, I’ll be there’. I meet the family at the lift on the ground floor beside Aer Lingus check-in. Nuala says: “A lot of the families go monthly, so you build a relationship. You get to know the child; the family doesn’t have to tell their story every time. 

"I’m thinking of a little girl called Ailbhe. Whenever she goes through, she gets a little spray of perfume in duty-free. We bring families to the gate, go onto the flight with them, get them settled before other passengers board. They might go in the cockpit, get their photos taken. And we stay with them if there’s a delay.”

For Niamh, it’s “just trying to be kind” and listening to what families need. “Sometimes, we see them coming straight from the hospital with Penney’s bags: They never made it home; their lives have changed. I know the nightmare they’re going through; you just want to mind them. That Josh has gone through it has definitely helped. I tell them about Josh. And they have hope.”

• The Gavin Glynn Foundation receives no government money. It relies on fundraising. See: tggf.ie