In October 2018, our lives as parents changed dramatically.
Kate , our then 6 year old, occasionally complained of neck pain, sporadic nausea in the mornings, restless legs at night and some unexplained episodes of tiredness. We had attributed the neck pain to a bad fall on holiday when she was three years old.
After several consultations with paediatricians, G.P.s, orthopaedic and A & E staff, we were always reassured that everything was fine. After again visiting the GP in October 2018 and been advised to go for physiotherapy, we insisted on first having an MRI scan.
Following this scan at Bon Secours Hospital, Cork we received the most devastating news. Kate was diagnosed with a rare form of CNS glioneuronal tumour. Following surgery, Kate was commenced on a clinical trial drug that targeted one of the specific mutations identified in her tumour sample.
For the past three and a half years, Kate has stayed on this treatment. We were advised in Apr 2022 by our excellent medical team at CHI Crumlin that Proton Therapy would now be the most effective treatment for Kate and we attended an initial appointment at WPE ,Essen, Germany in May 2022.
We want to express our sincere thanks to John at the Gavin Glynn Foundation, who has provided multiple supports to us during Kate’s cancer journey. This including organising a second opinion regarding best treatment plan for Kate as well as comprehensive support around our trip to Essen.
John and his team have taken away all the stress around organising our flights, ground transfers, accommodation and expenses for both our trips to Essen. We are flying over this weekend with Kate and her three siblings for six weeks.
Thanks to John and his team at The Gavin Glynn Foundation, we have had time to concentrate on caring for our sick child.
John offers invaluable support and practical advice to us and so many other families in really tough times.