Seán’s Story.
Seán’s journey would begin when our family GP reviewed Seán because of left leg/hip pain in late November 2024. In an otherwise healthy teenager, she was very concerned about Seán’s sudden onset of severe pain and sent him to our local hospital for urgent review and an X-ray.
While we waited for a follow-up paediatric review clinic appt., Dad, Liam, took Seán for a physiotherapy appointment. The physio also expressed concern about Seán’s symptoms and recommended an MRI. I took Seán for his paediatric follow-up appointment, requested that the X-ray be done during this appointment, and a referral for an MRI appointment.
On Christmas Eve, 2024, Dad and Seán went to Sligo University Hospital for an MRI appointment. Our lives would be forever changed when Paediatric Consultant Diego reviewed that MRI. Seán would need an urgent CT Scan and urgent bloods. Dr Diego had to give the devastating news to Liam and Seán that Seán had a large tumour in his left pelvis. Obviously, it is never a good time to hear that your son has a tumour, especially on Christmas Eve.
On St Stephen’s Day, our Crumlin Oncology Consultant, Sheryll, rang Liam in an attempt to reassure us. Our reality now is an agonising wait until normal services resume in Crumlin, after the Christmas holidays. Seán would ask Dad, “Did the tumour mean he had cancer?” Pain and heartbreak were very real, not knowing our beautiful son’s fate.
Seán would begin a harrowing week of trips to Dublin, from January 6th 2025, Crumlin Hospital: biopsy of left hip tumour, PET Scan in Blackrock Hospital, Crumlin Hospital: Porta Cath insertion and a biopsy of his right hip. We would have to tell Seán that he did have cancer, as on the 10th of January, Seán would be diagnosed with a left pelvic Ewing’s Sarcoma.
Our Consultant Sheryll and CNS Joanne would tell us that Seán’s cancer was curative. On that day, I did not register the 14 cycles of chemo necessary, radiotherapy and surgery; I focused on the word curative.
Seán would begin chemotherapy on St John’s Unit, Crumlin Hospital, on 13th January 2025, under the highly specialised and diligent care of the haematology and oncology teams. We would become dependent on the clinical expertise and care of the nurses administering chemotherapy. We would be supported and cared for by all the staff of St John’s Unit, including Physio, OT, Dietitian, Psychologist, Play Therapists, Social Worker, and Parent Room staff. Seán would be admitted to Sligo University Hospital after his first round of chemotherapy, with neutropenia. We would learn that the Sligo Paeds team would consider Seán one of their own and see him through 14 pre- and post-chemotherapy care admissions.
In April 2025, as a family, we were adjusting to Seán’s alternate weeks of chemotherapy treatment at St John’s Unit. Alison Scally, from Solas Hospital School in Crumlin, would work with Staff at Drumshanbo Vocational School, organising an AV1 Robot. Seán would get back to school virtually with “Seán Bot”. Then the discussion of Proton Beam Radiotherapy, with kindness, from Radiology Consultant Dr Lavan began and the realisation of 6 weeks in Manchester, for Seán. Our fantastic Social Worker, Caireann, who had previously worked through all the necessary paperwork with us, would now discuss John Glynn and the Gavin Glynn Foundation with us.
John Glynn, TGGF, first contacted us in April 2025, and fortunately for us has been in Seán’s corner ever since. I honestly cannot put into words the relief when you open your emails and see that all the arrangements for assistance at the airport, flights, airport transfers, accommodation, and living expenses are sorted. There was so much going on in Seán’s young life at this time, and being separated from family and friends for six weeks would be challenging enough. For our family, we did not have the additional burden of how to manage financially for those 6 weeks in Manchester. Seán would find himself amongst his own on those daily trips to The Christie Clinic for Proton Beam Therapy, as he was the one who could truly empathise with those going through it.
Seán would return from Manchester on the 4th July, having completed 28 sessions of Proton Beam radiotherapy and 2 cycles of chemotherapy. And get straight back to completing chemotherapy sessions on St John’s Unit. Seán would have his 14th and final admission to St John’s Unit on the 9th August, and would be congratulated by staff for his triumphs. Our St John’s Unit and TGGF families become intertwined in the hospital corridors, attempting to navigate our children’s individual journeys. To those whose paths we crossed, our thoughts will always be with another family, and one of the bravest and best of young warriors.
With chemotherapy and radiotherapy treatment now completed for Seán, plans had to be made once again to travel to the UK. Seán would have to undergo major orthopaedic surgery to remove the tumour, now dormant from successful treatment. These plans went “sideways” not once but twice for Seán, with everything having been booked and arranged by all at TGGF, having to be cancelled. It all could have become a “bit” overwhelming, dealing now with 3 teams: Sligo Paeds, Crumlin Oncology, and Birmingham Royal Orthopaedic, making every attempt to get Seán across the line for surgery. However, John Glynn remained in Seán’s corner and would be so reassuring that he “would be sticking with us,” and would be rearranging everything.
We were very fortunate to have had an amazing team of professionals once again, at the Royal Children’s Hospital in Birmingham, where Seán and Liam would travel on the 17th of October. Once again, all at TGGF would be looking after our family, and John Glynn would stay in contact. Seán would undergo a Left Hemipelvectomy, P1 Resection on the 19th of September in The Royal Children’s Hospital, Birmingham. The surgery was successful, and the relief was enormous, as for the first time since Christmas Eve, Seán no longer had cancer. Storm Amy would play havoc with travel plans, arranged again by TGGF, for Liam and Seán on the 3rd of October. Fortunately, Liam and Seán travelled home safely on the 4th October, much to the relief of all our family.
Seán is now in the rehabilitation stage of his recovery and doing very well, as he adapts to walking, following major orthopaedic surgery. With the help of his physios, Lorraine, Orla and Martin, he will continue to recover. Fortunately for Seán, he has exceptionally good friends who have remained unbelievably mindful and supportive throughout this time. Seán also has the amazing support from all the staff at DVS, who have facilitated his return to school part-time. We are also very fortunate to have had the support of family, friends and work colleagues throughout this process.
John and Jayne Glynn’s superhero cloaks have always been visible to our family throughout this process. We believe that their guardian angel, son Gavin, secures their cloaks, so they can help us families in need. We have never taken for granted all the financial and emotional support we have received from TGGF. We hope that by telling Seán’s story, we will demonstrate the amazing positive impact the charity’s organisation has had on our family.
Please support The Gavin Glynn Foundation and help our families stay together when their child is dealing with the fight for their life against cancer.