When I was 11 my parents noticed that I would watch TV in an unusual way, I would cock my head to the side and squint to get a better view. This was worse when playing video games. I also developed fatigue, and extreme thirst and remember running to the toilet especially at night, drinking from the tap, and having to pee often. I thought there was something wrong but for some reason, didn’t tell anyone. Soon after this my parents brought me to a routine review with my orthoptist and she noticed unusual eye movement. She recommended an immediate review by an ophthalmic consultant who sent us to Waterford for a CT which confirmed a mass compressing the optic nerve. 2 weeks after this I got very fatigued and felt very sick as we were preparing to go to Beaumont Hospital for surgery. It was only after my neurosurgeon, Daniel Rawluk recommended I take hydrocortisone steroids pre-surgery that I felt suddenly better than I had in months as my body had slowed production of many critical hormones.
While I was at hospital I had an open craniotomy and a cystic mass was discovered. All histology results indicated the mass was a benign cyst.
The cyst had destroyed my pituitary gland, the master gland of the body. It left me dependent on lots of medicines to supplement my hormone loss, with loss of peripheral vision & growth retardation as well.
Under the expert advice of the endocrinologist at CHI Crumlin I started daily growth hormone injections a couple of years later and progressed somewhat
later than my peers through puberty. This had numerous effects on me mentally as kids my age were more physically mature than I was. It resulted in a difficult start to secondary school for me. Things settled down over time though. The cyst refilled and my surgeon recommended an Ommaya drain to remove the fluid that built up. This seemed to work at first but by 2020, severe headaches were having a significant impact on my ability to study, and my energy levels were very low at times.
By my leaving cert year, I was referred to a consultant specialising in a different type of surgery in order to remove the base of the cyst. In August 2023, having suffered with blinding headaches all throughout my Leaving Cert, surgery revealed a craniopharyngioma. I was told that without the correct treatment this tumour would just keep recurring. My oncologist Claire Faul recommended Proton Therapy which is unavailable in Ireland. Essen Germany was the treatment centre recommended by the team.
This was a shock, as I’d assumed treatment would happen in Dublin. By this time, I had commenced my studies in TCD in Computer Science and was settling into a new life. I did not know anything about the centre or what to do next. I remember leaving the hospital with my head reeling and just sitting in my apartment for the day talking to a friend about everything that had happened to calm myself down.
My mum found a Facebook page on proton therapy and asked a few questions about the process. She was also in constant contact with the team in Beaumont. It was at this point that The Gavin Glynn Foundation made contact and offered to support us on our journey and we’re very thankful they did as they’ve made everything so much easier for us to deal with and made the whole process less stressful.
College will have to wait for this year, but I’m looking forward to getting treatment and moving on with my life.