Jessica (Jaye) lives in Kilteel, Kildare with her mum and dad (Clara and Brian), her older brother and sister (Nathan and Naomi) and her two dogs Otto and Carter. Jaye was 11 years old when she developed a headache in August 2025 .
We assumed that it was a normal virus but after a couple days her tongue became swollen on the right side. The headaches were not getting better so we brought her to our local GP. He assessed her and recommended we bring her immediately to Crumlin Hospital .
He subsequently told us that she had failed her neurological assessment but didn’t want to alarm us. The team in Crumlin immediately started carrying out scans, and after MRI and CT scans they found a tumour on one of her cranial nerves, just below the brain. It couldn’t be biopsied because of its location – there are lots of nerves and blood vessels so accessing that area is too risky. The medical team in Crumlin worked with another team in Beamont hospital and, based on the scans, everything indicated a slow growing benign tumour. After 5 weeks of appointments, we felt that Jaye’s symptoms were getting worse. Her headaches were constant and her speech and swallowing were becoming more affected. We spoke with the doctors in Crumlin who took our concerns seriously and immediately organised a repeat MRI for two day’s time. The MRI image showed that the small tumour had massively grown in the 6 weeks, so much that it was now possible to biopsy it through the tissue at the back of Jaye’s nose/top of her throat. Within a few days (start of October 2025) we had the diagnosis that Jaye had an aggressive type of cancer called Alveolar Rhabdomyosarcoma. Surgery was not an option to remove this tumour, for the same reasons that a biopsy couldn’t be done in the early stages. Her treatment plan was laid out in front of us by the St John’s Ward team in Crumlin – nine cycles of chemotherapy, each cycle lasting 3 weeks, with a 6-week treatment over in The Christie Hospital in Manchester for proton treatment. This treatment would take place during cycles five & six of chemotherapy. Proton treatment would be a daily appointment Monday to Friday for 6 weeks and she would also get chemotherapy while over there.
Our heads were already spinning and living abroad for treatment was one more complex and worrying aspect. Do we all move over, where do we stay, how do we fly with a sick child, do we get a bus each day or hire a car, when do we start booking? As this wave of questions were coming into our heads we were told by the medical team – don’t worry about Manchester, Jayne and John Glynn will help you with all of this.
Once Jaye started treatment things got really tough – she was very unwell and yet showing incredible strength and resilience. John and Jayne contacted us and spoke about the trip to Manchester – all we had to do was send them the dates given to us by the medical teams. They would look after all the logistics of flights, transport from Manchester airport and accommodation while there. The relief of having this support can’t be overstated – all our energy was focussed on chemo and “regular family” logistics, so the thoughts of moving/organising a second place to live for two months was really daunting.
Thankfully we got brilliant news in December before flying over to Manchester that Jaye’s tumour had shown a big response to the chemo treatment, shrinking substantially. This was the first moment of celebration in months and reinforced the value of Jaye’s tough treatments.
John and Jayne stayed in touch with us while we were over in Manchester, checking in to see how all was going as well as supporting us with living expenses and organising flights for Jaye’s siblings to come and visit.
Jaye’ s chemotherapy treatment is continuing now that she is home from Manchester while we wait another month for a scan to assess the impact of the proton treatment. Proton treatment continues to work on the tumour for 2 months after treatment finishes, so the results are not immediate. We are confident and hopeful that this tough road of treatment will just be one part of Jaye’s childhood memories in the future.
The kindness and support we received from The Gavin Glynn Foundation will stay with us for the rest of our lives. We want to give a heartfelt thank you to John and Jayne for everything you did for Jaye and our family during this scary time and encourage anyone reading this to please consider supporting The Gavin Glynn Foundation.
