Brave Maya Jean (8) battling cancer
It’s hard to believe Maya Jean Gormalley gets tired. She appears indefatigable, her bubbly personality as bright as the lemon yellow summer dress she sports on a warm September afternoon.
Maya Jean has just finished her school day at St Joseph’s NS in Kingscourt. She eagerly introduces Mr Blankey, the doll her aunt gave her for her christening: “I got him March 2nd, 2013, but I’m older. I’m eight, almost nine,” she tells.
For the last few months Maya Jane has racked up a series of visits to hospitals and her assessment of the experience is pretty direct. “It was boring,” she exclaims.
For dad David and mother Lorraine, however, it has been a rollercoaster of worry and emotion.
The reason Maya Jean gets tired is because, on June 1, Dr Darrach Crimmins performed surgery to remove a brain tumour in Temple Street. A little over a month later, she flew to Germany to undergo proton beam therapy at Westdeutsches Protonentherapiezentrum Essen (WPE).
An undoubtedly traumatic time for the Gormalley family, but one where many logistical considerations were removed. The assistance came from The Gavin Glynn Foundation, which gave practical support to the family. The Foundation assists those affected by childhood cancer, families whose lives are turned upside down.
When Maya Jean was in the early stages of treatment a GoFundMe page was set up with an initial target of €15,000. The figure now stands at over €52,000: “It is really great,” Maya Jean’s mum said of the public response.
Lorraine says cancer symptoms can be difficult to spot: “About three weeks before she was diagnosed, Maya Jean was getting sick. It happened most often in the morning, she had no other symptoms, only that she got tired.”
The initial trips to the doctor did not identify the problem, but persistent vomiting and vision difficulty resulted in a visit to A&E in Drogheda. This brought Dr Darren King into the picture.
Dr King ordered a scan, which showed a mass on the brain. The medulloblastoma was a primary central nervous system (CNS) tumour. Every parent’s worst nightmare, cancer: “We were taken to Temple Street in an ambulance. Darrach Crimmins [Paediatric neurosurgeon] performed brain surgery cutting all of the tumour out from the fourth ventricle at the top of the spinal chord.
“I don’t know how to put it into words,” Lorraine grasps for a way to express the initial shock of the diagnosis. “It was awful. There is still this cloud over us but we have come through a good bit, so we are coming to terms with it.”
Those moments of the initial diagnosis were almost overwhelming: “I was on my own, David was coming from work and on his way home to the other two kids, Caellum (10) and Alex (4). They were taking her for the CT scan and I called David and said ‘I don’t think you should go home, I think you should come here’. When the hospital staff told me about the tumour they said not to tell David while he was driving. I had to hold that information.
“I was trying to keep upbeat for Maya Jean, trying to make the ambulance journey into something exciting, while inside my heart was breaking. I didn’t know the ins and outs of a brain tumour, I thought my little girl was going to die,” Lorraine recalls.
After the operation further treatment was lined up: “That meant radiation therapy and chemotherapy. She recovered in hospital over the next few weeks.”
Linking in with Crumlin Hospital, the medical advice from Temple Street was for Maya Jena to travel to WEP in Germany for the proton beam therapy treatment: “It is radiation, but it has less side affects,” Lorraine explained. This was when the Gavin Glynn Foundation kicked in.
Maya Jean’s mum set out how the charity offered a lifeline at a particularly arduous time: “Crumlin Hospital and the HSE look after the actual treatment. That gets organised, but a couple of weeks into getting this devastating news of a brain tumour you have to make arrangements to get to Essen. The hospital gave us a number and an email address for John Glynn. What they did for us at a time of great stress was incredible.
“They took all that stress away. John (Glynn-charity founder) booked our flights and a taxi to the airport. Covid was restricting travel, so he flew us via Amsterdam. He booked an apartment for us, it was a 10-minute walk from the hospital. When we arrived on Sunday, a day when all shops are closed in Germany, there was food left for us. We ended up eight weeks in Essen and, besides the financial support, there was emotional and practical support as well. He had been through it before, so his support came from a place of experience,” Lorraine says of the aid the charity gave.
Since coming back from Germany, Maya Jean has been returning to the normal activities of an eight year old: “She has a really good prognosis and the fact that she got the treatment in WEP means that she can live her best life with less of the side affects of conventional treatment.”
The GoFundMe page was set up by a family friend from Sligo Joann Hosey: “Friends were going ‘We want to help’ but, we got so much help from The Gavin Glynn Foundation, we felt we didn’t need it. We said ‘if you want to do something, then do it for the Foundation so the proceeds can help other families’.”
Lorraine’s family, Lorcan, Aoife and Brenda Sheenan, all added to the fundraising efforts: “They arranged a charity walk on September 12 here. It was lead by Maya Jean’s class in St Joseph’s National School. There were so many donations for that. Refreshments and water - all donated by local businesses. Maya Jean is not able to walk the 5km, but she was driven on a golf cart.”
Lorraine’s team in work undertook a virtual walk from Kingscourt to Essen in Germany, 1,117km, and donated the proceeds to the fund.
Returning to a normal life is a step-by-step precess. “She is really good. She’s back at school and back at her dancing class. She gets tired, and not as active as she would normally be, but she is in great form. She has chemo next, that’s going to be tough on her system,” Lorraine says.
That cycle of treatment goes over 36 weeks and, though it will be difficult, it is a vital part of the overall care.
The medulloblastoma is the most common cancer. Of 60 brain tumour operations performed in Temple Street per year, half are medulloblastoma: “There is plenty of research and they know what to expect. They know from protocol that it needs the three parts of treatment so it does not come back.”
Lorraine speaks in glowing terms of the Temple Street staff. In finding herself in the worst imaginable situation, she is presented with the best of humanity: “For that whole week you are in a bubble. They absolutely wrapped you up - the surgeons, psychologists, social workers, nurses - they get you to talk through the enormity of what is happening. It makes you feel safe, because they know what they are talking about.”
Even now the support of friends and acquaintances and total strangers continues to see the donations on the GoFundMe page go up and up: “That outpouring of love and support meant so much to our family. That people would make that much effort, it just gets you through.”
Lorraine hopes that the money raised can give families in the same situations as the Gormalleys the breathing space they experienced: “The weekend of our fundraiser four families were in contact with John about support to go abroad for treatment. It can take between €12,000 and €15,000 to help families at this very vulnerable time. It is nice to think that we can give back to help other families who find themselves in the same situation.”