Sunday 16 December 2018

WATCH: 'We talk about his amazing smile and his big blue eyes' - Dad on his inspirational late son Gavin Glynn (4)

The Glynn family endured the unthinkable when they lost their four-year-old son to cancer. Inspired by his bravery, now they're helping other families fight the disease. Celine Naughton hears their story

Gavin Glynn
Gavin Glynn
John Glynn talks about losing his four-and-a-half year old son to cancer on October 21st 2014

He was known to the nation as a 'Little Superhero' and now, three-and-a-half years after his life was cut tragically short from a rare cancer, Gavin Glynn's power lives on.

Gavin was only four-and-a-half years old when he died at home in Greystones, Co. Wicklow, on October 21st 2014. His older brother Conor, sister Lucy, and parents John and Jayne were holding his hands as he passed.

Losing a child is every parent's worse nightmare. And the Glynn family have had to learn to live with the pain that their little boy's absence has caused.

"Anniversaries are always the worst," says John. "The first week, the first month, the first Christmas and birthday and so on.

"They say that time heals, but the immense shock and pain of losing a child never goes away. And now it is a question of managing the pain, understanding it and building it into our lives.

"Not a day goes past when we don't still think and talk about Gavin, his amazing smile and laugh, his big blue eyes, his joy for life."

How does a family knit back together after such a devastating loss? And how do siblings cope with losing their little brother? "It's important to us all that Gavin will always be a part of their lives," says John, "and that of our fourth child Billy, who was born last year."

Following Gavin's death, John and Jayne knew they didn't want to see other families go through similar journeys alone, and they wanted to do something to help.

The result of their endeavours is the 'Gavin Glynn Foundation', a charity that assists families with children fighting cancer to travel overseas for specialist treatment not available in Ireland.

To date the foundation has arranged and financed all the logistics of such journeys for 30 families who had to take their children to hospitals in Canada, Germany, the USA, Switzerland and elsewhere for life-saving treatment.

Many go to Essen in Germany, a centre of excellence for proton beam therapy (PBT). Unlike normal radiation, which may cause collateral damage by destroying the area around a tumour, this is a precision laser beam therapy that targets specific cancer cells without damaging the tissue around it.

The HSE covers the cost of treatment where necessary and in some cases will pay for flights for the child and one adult companion. However, accommodation, food, transport and other expenses for the sick child and adult attendant are not covered, and nothing is covered for the rest of the family.

With treatment typically going on for two months or more, the expense involved is often a further worry for already distressed parents.

John cites the example of a man who called him one Tuesday looking for advice.

"He'd just been told his four-year-old son required treatment for eight weeks, and he'd have to travel to Essen the following Monday," he says. He and his wife were distraught. They'd never been to Germany, didn't know where to stay, or how much accommodation would cost - and amid all this turmoil, they were trying to deal with their emotions about their child's illness. They also had two other small children.

"Being told your child has cancer is devastating. It's a time when families need the love and support of each other more than ever, not to be split up or worrying about money.

"With the help of our charity partners in Cogs and Marvel event management company, we were able to say to this father, 'You look after each other, pack a bag and we'll look after the rest.'

I could hear the relief in his voice. It was like lifting a weight off him. So we got to work, organising flights for the entire family, accommodation, special assistance at the airport, and a taxi to collect them from Dusseldorf Airport and take them to their apartment. All the family had to do was pack a bag."

He says the logistics of planning such a journey coupled with money worries places untold hardship on parents dealing with a child's serious illness.

"Jayne and I went through it so many times ourselves," he says. "Gavin was 18 months when we first noticed a small lump while we were changing his nappy. We took him to the GP to be on the safe side. He said it was likely a bruise, and to rub some steroid cream on it and come back if it hadn't cleared up in four weeks

"That didn't sit right with us, so we took him to another GP for a second opinion. This doctor recommended we take him to Crumlin Children's Hospital."

They spent 16 hours in Crumlin while various tests were carried out, and then came the bombshell. John remembers Friday October 19th 2011 in vivid detail.

"Jayne and I sat next to the cot where Gavin was bouncing around, smiling at us, and then a consultant came in, accompanied by a surgeon, a nurse and a social worker," he says. "That was the first sign that this was a lot more serious than we'd expected. The consultant said, "Gavin has a very large cancerous tumour growing inside his pelvis, which has also spread to his lungs which means it is already stage four." Our hearts stopped. It was rhabdomyosarcoma, a malignant tumour of the muscles. Stage Four."

"We both agreed we would do everything we could and never give up home, we would go to the ends of the earth to help our son beat this". The couple were advised to go home for the weekend and bring Gavin back on Monday to start treatment.

"Gavin was laughing in the back of the car while we drove home in utter shock," says John.

After six months of intensive chemotherapy, surgeons removed the tumour, but to kill the remaining cancer cells they needed to go to Switzerland where Gavin would have 28 sessions of proton therapy a day for eight-and-a-half weeks.

The trip cost €20,000 and family and friends raised funds to help pay for the family's flights, accommodation, travel, food and living expenses. The treatment went well and soon the little superhero was back home, running around like other kids his age. But occasionally, Gavin would do or say something that made him appear a lot older and wiser than almost three.

"Gavin was such an amazing little boy. He would always surprise us with things he said and did. For a little boy he really knew what love was and showed us all on many occasions. He would often just hold your face and look at you in the eye and say 'love you'. And he really meant it. Gavin was full of energy and positivity and it rubbed off on us all.

"He really had a special kind of energy. He touched people, he brought people together."

The day before his third birthday, John and Jayne were told the cancer was back. A centre in France offered another radiation treatment called brachytherapy, but they said Gavin wasn't a suitable candidate.

"We were told that nothing more could be done, but we didn't accept that," says John. "I contacted another family in the UK who son had the same type of cancer as Gavin and they told me about a hospital in Amsterdam called AMC who specialized in brachytherapy. "We brought Gavin to AMC in Amsterdam where he received surgery and brachytherapy treatment over the course of three weeks."

The team in AMC Hospital in Amsterdam liaised with the oncologist in Crumlin and since we created this new avenue another child has been sent there also.

"Since Gavin was diagnosed I chose to educate myself on Gavin's type of cancer and available treatment options," John says. "I had read a large amount of medical articles to the point where I was well versed in the childhood cancer arena. When conversing with oncologists, some would even ask where I'd trained. I believe that knowledge is power. You need to know what you're dealing with, and get second, third and fourth opinions if necessary. If you're buying a car, you don't jump in and buy the first one you see. How much more important then to arm yourself with all the information you can get when it comes to decisions regarding the life of your child. Knowledge is key.

"I was always very conscious to read only medical articles from reputable cancer institutes and hospitals and not just google everything."

A year later, in February 2014, a scan showed the tumour was growing again. John and Jayne found a new, cutting-edge treatment involving surgery and heated chemotherapy that was being done in Houston, Texas, where Gavin was deemed a suitable candidate. But it was hugely expensive. They'd have to pay a deposit of $25,000 followed by $350,000 for the treatment.

"This time the entire nation rallied around us and raised all the funds we needed," says John. "We're forever thankful to everybody for their support. However, three weeks after the surgery, more tumours were found growing in his pelvis and lungs. It was a devastating blow. We knew that this was it, we had exhausted all avenues, and now Gavin's journey was coming to an end.

"We took him home to spend his last days with Conor, Lucy and ourselves. We asked the consultant, 'How long?' He thought a couple of days, but we had our beautiful little boy for almost two weeks, and we cherished every moment.

"Two days before he died he was out playing in his remote-controlled car, but then he started to fade. He was on the sofa with us and at 6pm, on Tuesday October 21st 2014, he opened his eyes and reached out his arms to give us all a hug, and then he took his last breath.

"Right up to the end, Gavin wanted us to know how much he loved us. He was such an inspirational and loving person, and he packed more into his four years than many do in a far longer lifetime. The love he shared was so strong, it spurred Jayne and I to set up the foundation in his name to help other families going through what we went through."

What we have learned over the past few years while helping these families is the strength and courage that comes with fighting for your life.

The kids and families we help all have something in common. Hope and strength.

Strength to do whatever it takes to continue fighting and to never give up. Hope that with every new day and every new breakthrough treatment that their child will beat this bastard disease and be free to live a normal life.

Gavin sends us strength to continue on every day and help families in his memory."

For John and Jayne now, their focus is on ensuring that fundraising for the Gavin Gylnn Foundation continues, so that they can help other families who find themselves in the same situation.

"Every year 220-230 new cases of childhood cancer are diagnosed in Ireland - that's more than four new children a week that will be told those four words - your child has cancer," says John. "If anyone reading this has a child in that unfortunate number, we want you to know that you're not alone. We're here for you. And no matter what happens on this challenging journey, never, ever give up hope."

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