Megan and family ‘thrilled to be back home’

LITTLE Megan Malone, the four-year-old who defied all the odds in her fight against a rare form of cancer, returned home to Ireland at the weekend where she was greeted with a hero’s welcome.
Megan, along with her brothers, Dylan and Tristan, sister Chloe and her parents, John and Sheila, flew into Kerry Airport on Saturday after spending nine months in the US receiving treatment for her condition.
Almost a year ago, Megan was given just three weeks to live after being diagnosed with the rare cancerous brain tumour called sPNET medullablastoma. The family then made the decision to move to the US for treatment, where Megan amazed doctors with her response to the treatment.
Her father John, who is from Ballyalla, spoke to The Clare Champion from their family home in Cork about Megan’s journey, and their optimism for her future.
He thanked the people of Clare for their generosity in donating to fundraising for the family to move to America for Megan’s treatment.
He explained they are thrilled to be back home in Ireland. “It was very exciting coming home. We didn’t expect the crowd and the reception that we got at the airport at all. We had no idea that Megan’s story was such a big story in Ireland, we knew it had been in the papers but we were kind of in a bubble over in America so it was amazing. Megan got an awful shock at the airport when everybody cheered and she got a bit shy but she got into it after a while,” he said.
“When you consider the prognosis that she had, and the news we got, for her to be here now and to be enjoying life and cycling around on her Dora bike is just amazing,” he said.
Megan is now eating well and maintaining her weight, even managing to go to her nanny’s to bake sausage rolls on Monday.
Her treatment at the New York’s Presbyterian Children’s Hospital has left her “visually” cancer-free and it is hoped radiotherapy she underwent in Boston has eradicated any remaining microscopic cells.
Speaking about their time in America, John said there were plenty of difficult times for the family. “There were times that it was extremely tough. You didn’t know if she was going to survive from one minute to the next, she was very, very weak. She was 12.5 kilos at her lowest point. I remember once, Sheila had a viral infection and she couldn’t come near Megan for a while. I stayed with Megan for eight or nine nights and then when Sheila was ok to come in, she just looked at her and said, she’s not going to survive the night. She was that poorly. I didn’t notice it because I was with her all the time but she looked like she was at death’s door.
“There were several times that you would think to yourself that another human wouldn’t be able to cope with the treatments. The doctors said to us that for any child, anywhere in the world and for any treatment, this is the most severe. Any bit more and you’re getting into the territory where you could kill children. It’s tough but she’s tough and very, very resilient.”
Despite what the family were going through, there were also some good times, John said. “We had some family days out and the fact that we were all together was pure joy. We couldn’t have managed it only for being all together as a unit, especially with Sheila and myself. We were able to manage the situation well but it did test us, there’s no doubt about it.”
Because so little is known about the disease, doctors are reluctant to give a definite prognosis for Megan, however the Malone family are optimistic given her amazing response to the treatment she received in the US.
“This condition is very, very rare. Of the 400 million people in America, only 100 children are diagnosed with Megan’s complaint and a lot less than that if you take into account her age and the spread she had. They’ve had success with this disease and we’re hoping Megan will be a long-term successful survivor. What the data is telling them is she has a 50:50 chance, which is what we were always told. But you would have to think that Megan has a much better chance than that given the fact that her response to the chemo has been unseen in America. They didn’t have the opportunity to operate on her main tumour and for the chemo to eliminate everything from a visual point of view without that has been described as extraordinary. They have never seen anything like it,” he explained.
According to John, the doctors are confident the radiotherapy Megan received would remove any remaining cancer cells. Although there are no guarantees, the family are confident about Megan’s future.
“It still doesn’t stop it from coming back and they don’t quite know why because of the rarity of the disease. But the way we look at it, she was given three weeks to live and that was almost a year ago. So far, we’ve increased her life expectancy 20, 30 fold. We’re delighted, every day is a blessing to us and we are just going to get on with it. We’re going ahead as if she is completely cured and we’re not thinking about anything else. We have made plans and have had discussions with doctors in case it does come back. There are options if it does come back, they are not as good if it does recur, but it’s not a completely done deal.”
Megan will have to be monitored carefully, going for scans in Cork every three months for the next year and then every six months.
The family are planning to make life as normal as possible for Megan, even hoping that she will be able to attend pre-school.
“The doctors in America have said there is no medical reason why she can’t go, if all the other children’s shots are up to date. She is dying to go, all she ever talks about is going to school but she can’t really until she has a ’flu shot. If she got the ’flu, it could turn into pneumonia and that could kill her. She has had no MMR, so if another kid got measles or something like that, it could kill her. We have to be very, very careful of how we would manage that, we would have to make sure every kid in the class is up to date with their immunisation. She is very strong but one small thing could knock her back again. It will be October before she can get the flu shot and we’ll see how things go, we might even end up starting her on a day or a few days a week to see if she’s able to cope.”
The Malone family’s move to America was only made possible to the fundraising efforts of people in Clare and Cork, something John says they are eternally grateful for.
“To be honest, we would never even have considered going to America only for the fundraising. We couldn’t have survived out there without it and saying thanks is just not cutting it. People have really bent over backwards to help us. There was a tremendous amount of money raised and if this disease comes back again, that money will be needed in the future. There are a lot of things that could happen, especially in the next five years.
“The support in Clare was fantastic. I haven’t examined the account but from what I hear most of the funding came from that direction which is amazing. The fundraising night that was held in the Auburn Lodge with the celebrities and sports stars was an amazing success, and I understand €33,000 was collected from that. We’ll never get around to thanking everybody for the support, but we’ll certainly do our best to try.”
Because Megan’s treatment has left her tired out, it is unlikely that she will be able to make a trip to see her family in Clare for a number of months but they are looking forward to the visit.
“It’s great she has this behind her now. I know she coped very, very well but it was still very rough on her. But she got through it, she’s a fighter and hopefully it will stay away and we will be one happy unit for ever more and this will be a story with a happy ending,” John concluded.