The Garry Family in New York. Mark Garry is holding daughter Tessa
By Irish Echo Staff
As if Covid-19 wasn't worrying enough, an Irish couple and their family flew to New York in an effort to make sure that their three-year-old daughter did not suffer a cancer relapse.
The Garry family described the Atlantic crossing as "surreal." But the very real part of their mission was to make sure that Tessa stays well.
Tessa’s mum Orla remembers an empty Dublin airport and only a handful of people on the flight to New York alongside Orla, her husband, Mark, and children Tessa (3), Michael (11), Leo (10) and Anna (8).
That was the first transatlantic trip last year. And there is another coming up in a few weeks.
It had been a very demanding and busy 18 months leading up to the trip since Tessa, now aged three, underwent intensive treatment at Our Lady’s Children’s Hospital in Dublin to keep her cancer at bay.
Now there was an opportunity to prevent a relapse of Tessa’s cancer as she qualified for a clinical trial at the Sloan Kettering Memorial Hospital in Manhattan.
“It was lovely to have some family time exploring New York on foot. Almost everything was closed but I think we must have walked every street in Manhattan and the kids had an experience of a lifetime, says Orla.
“We were so well looked after at Sloan Kettering Memorial Hospital we couldn’t speak highly enough of Tessa’s care there. We feel so lucky that we got Tessa to the point where she was eligible for the trial and then to get over despite Covid was actually amazing.”
When Tessa was only 14 months old, she was diagnosed with stage four neuroblastoma, an aggressive form of cancer that has a very high relapse rate.
Relapses can be very difficult to treat and often don’t have a positive prognosis, so in 2020 Tessa’s family were delighted when she qualified for a clinical trial in the U.S. The treatment involved a series of vaccines spread out over a year, the aim of the vaccines is to teach the body to fight off any neuroblastoma cells and therefore prevent relapse.
It’s now April 2021 and Tessa is due to travel to the U.S. in June for the fifth time for her final vaccine. Time will tell if it has been a success.
Tessa is the youngest of four children and has two older brothers and an older sister. Since her diagnosis she has endured a lot, 80 days of chemotherapy, surgery to remove the primary tumor as well as stem cell rescue followed by stem cell transplant. However, according to her mother Orla, the worst part of all of this was that she was in isolation for almost seven weeks and her siblings couldn’t see her.
The trip to the U.S. at least provided the family with some distraction from the worry and intensity of dealing with Tessa’s illness, but aside from that somewhat unique experience the Garry family, like so many other families in Ireland experienced very little respite from the relentless cancer journey that they essentially face together in support of little Tessa.
But there was one such ray of light and that was a trip to Daisy Lodge.
Following Tessa’s intense treatment in Ireland, and before their trip to the U.S., she and her family went to stay at Daisy Lodge in Newcastle, County Down.
Orla describes the trip to Daisy Lodge as a breath of fresh air for all the family.
“Our experience in Cancer Fund for Children’s Daisy Lodge was nothing short of amazing. From the moment we arrived we were looked after like we were VIP’s. Everything was fabulous, the kids were so excited to see all of the different playrooms and we really enjoyed all of the family activities, which included massages and haircuts that were arranged for all and the food was delicious.
"We were able to relax, have fun and not have to think about anything for the whole weekend as everything was done for us. It was a magic weekend for us that no amount of money could buy. The staff were there 24/7 for absolutely anything we needed. We had the most amazing time. The kids were asking when they could come back as soon as we were driving out the gates. Daisy lodge is a very special place that everyone on their cancer journey should get to experience”.
Cancer Fund for Children opened the doors of Daisy Lodge in Newcastle in 2014. The center was made possible in a large part by the generous contribution of The Rory Foundation set up by golfer Rory McIlroy.
The center currently supports 450 families a year some of whom are referred for therapeutic short breaks through Our Lady's Children's Hospital, Crumlin, Ireland's largest pediatric hospital. But the capacity in Newcastle is not sufficient to meet the all-Ireland demand.
Cancer Fund for Children has now launched a capital appeal to raise €12.5 million to support the construction of a Daisy Lodge in Cong, County Mayo.
"It will be the first exclusive space for children diagnosed with cancer and their families in Ireland and will increase the number of families supported to 1,000 per year. This new project will effectively ensure that no child throughout Ireland will face cancer alone," said a release.
“I’m sure everyone knows someone that has been through cancer treatment and have some idea of its horror, but they might not realize the impact cancer, and maybe even more so childhood cancer, has on the rest of the family,” said Orla Garry.
“It really was a very difficult eighteen months for Tessa’s three siblings Michael, Leo and Anna. Our trip to Daisy Lodge definitely stands out as a small ray of hope and a time to breathe following Tessa’s diagnosis.
"We all had the most amazing weekend together away from all the treatment stuff. It was invaluable. No amount of money could pay for the fabulous weekend we had there. It was exactly what all six of us needed and we’ll never forget it.”
Planning permission has been approved and the design phases completed for the site in Cong opposite the gates of Ashford Castle.
"The site is currently a field of dreams, and in a Covid world Cancer Fund for Children are acutely aware of the challenges to get this centre built, but build it they will," added the release. More at www.cancerfundforchildren.ie