Ciarán

Here’s a little story journey so far.

Ciarán was always a healthy energetic boy who loved to play and tumble around with his friends.

On the 8th of January we received a call from Ciarán’s school that he wasn’t well so we took him to our local A&E in Clonmel hospital where they done tests and a CT scan. Later that evening they came in to give us what they found and all they could tell us was there was a shadow on his brain and they had contacted Temple Street. The nurses and staff on that day were fantastic.

They then informed us we would be taken by ambulance to Temple Street that evening once the ambulance arrived. Any parents worst night mare, it felt like we were in one and it couldn’t be real. We then travelled to Temple Street where we were greeted with the lovely staff and a neurosurgeon who was waiting to go through the CT scan in as much detail as possible and also to inform us Ciarán needed a full brain and spine MRI to know the full extent of what they were dealing with. The following day Ciarán went for his MRI and that evening we were told he had a tumour and it needed to be removed that it was the best course of action for now. The 15th of January Ciarán went under a 10 hour operation to remove the main tumour, and a biopsy was sent away, we then got told he needed another surgery to put in a permanent shunt to help drain the fluid from his brain, we were left speechless, he had only come out of ICU he was still so fragile looking but it had to be done. The following week Ciarán was finally introduced to solids again and he started physio to help him to regain his strength to sit up without support and to regain the strength to walk again. And then we were told he needed another surgery to put in the Hickman line. It was then we got told the biopsy result and it was a Medulloblastoma which is a malignant tumour. A plan was put in place to meet with our oncologist from Crumlin and she went through the plan that Ciarán would need radio therapy and chemotherapy. All while we were receiving this news and going through the game plan Ciarán was still progressing and by the end of his 3 weeks in Temple Street he was able to eat proper solid food again and was walking very short distances with help but mainly going out and about in a wheelchair.

When we got home we had a consultation in Crumlin with the radiologist who went through the process for going to Manchester for Proton radiotherapy.

It all happened so fast, John Glynn rang me Monday night and informed me he had been told we needed to travel Wednesday at this stage we still hadn’t been informed so it was a big shock but John and Jayne were so helpful, they got all the information and sorted the flights and accommodation for us to come over they helped us with everything and took such a load off our shoulders when we were still in shock of how quick it was moving.

We flew over the Wednesday got Ciarán’s assessment and planning scan done in the Christie the Thursday and Friday when they informed us of the process, they told us Ciarán would need 13 treatments on the full brain and spine and then he would need boosts to the tumours for a further 17 treatments which will be to the top of the head to the back of the head where they removed the tumour and to the bottom of the spine it was a lot to take in all while being told we would have to travel back the following weekend to start treatment, we flew home again the Saturday. We were to travel back the following weekend for Ciarán to start his treatment on the 26th of February, to travel over with Ciarán’s little sister we thought it would be easier for us to travel by boat and pack up everything we needed for them both into the car, this didn’t phase John at all and they got it all organised for the 4 of us to travel over as a family by boat no issues at all.

We are very grateful for all The Gavin Glynn Foundation has done for us and they managed to make a very difficult time that little bit less stressful by organising it all for us.

Ciarán is 8 treatments in so far and taking it relatively good, he’s slowly getting stronger and his cheekiness is slowly returning.