On the 25th of April, exactly a week after her 7 th birthday, our beautiful daughter Abigail was diagnosed with a Brain tumour. Abigail had been struggling with movement on the right side of her body which was getting progressively worse. Both her school and her ballet teacher had raised concerns about her movement also.
We brought Abigail to our GP who noted that she may have dyspraxia and that we should bring her to an occupational therapist for assessment. As her issues with her movement was newly onset, we weren’t convinced by this and in the meantime made appointments to see a physiotherapist and a paediatrician. On the Wednesday after her birthday, we brought Abigail to Aoife McCarthy, a physiotherapist based in Kilcock. After examining Abigail, Aoife told us that we needed to see a Neurologist sooner rather than later. Aoife went above and beyond and managed to get us an appointment with Dr. Declan O’Rourke, a Neurologist in Temple Street private clinic for the next day.
After examining Abigail, he sent her straight for an MRI. While she was still in the machine, both Dr O’Rourke and Ms Taffy Mandiwanza (Neurosurgeon) came to speak to us. Our worst fears had been realised. Abigail had a very large tumour on the left side of her brain. Abigail was scheduled for surgery the following week in Temple Street. She had a craniotomy with full resection- the best outcome we could have hoped for. We left Temple Street 6 days later with no complications awaiting just the pathology results for the tumour.
The following Monday we received a call from Taffy to tell us the pathology results had come back. Unfortunately, Abigail’s brain tumour was an aggressive rare Grade 3 tumour called an Anaplastic Pleomorphic Xanthoastrocytoma. Later that week we met with the oncology team in Crumlin. Given the type and aggressiveness of the tumour, Abigail would require further treatment. She would need 33 sessions of Proton Beam therapy, a type of radiation therapy that is not currently available in Ireland. We would need to travel to either Manchester or Essen in Germany to receive this. On top of trying to come to terms with the diagnosis we needed to think of the logistics of moving our family to a different country for Abigail to receive her treatment.
This is where the Gavin Glynn Foundation stepped in. The hospital social worker put us in contact with John Glynn who called us that evening. John was so reassuring and told us not to worry about any of the logistics or costs, they would take care of everything. We first needed to travel to Manchester, on short notice for a week, for an initial assessment. John and Jayne organised our flights, transfers, accommodation and expenses for the trip. We were met by Niamh from Aer lingus who escorted us through the airport to the plane. Abigail even got to visit the cockpit.
Two weeks later we headed across to Manchester to start Abigails treatment. Again, John and Jayne organised everything for us- our flights, accommodation, transfers and expenses. We were again escorted through the airport by Aerlingus crew. We are forever grateful to the Gavin Glynn Foundation for all the help they have given us. Taking away the worry and hassle of travelling abroad for treatment has allowed us to focus all of our attention on Abigail. We are so thankful for all the support we have received from family, friends, work colleagues and The Gavin Glynn Foundation on our journey.
Abigail is now in her final week of proton beam therapy treatment and is doing great. While we are unsure of what comes next, she is our hero and we will forever be inspired by her courage, strength and determination.
