Paddy was your typical 6 year old boy full of energy and mischief. He started being sick some time ago and after going back and forth to doctors nobody knew what was causing him to be sick, his symptoms started with just vomiting but progressed as time went on, when he started saying his head hurt and things were a little blurry we decided to book him in for an eye test.
We went for an eye test on the 6th of December, the optician noticed that his optic nerves were enlarged and contacted the eye specialists in Limerick hospital and we were advised to go straight down to Limerick for more tests. After further tests it was decided he would need to have a CT scan.
When the results came back from the CT scan we got news that no parent wishes to hear Paddy had a tumour in his brain, we were told we would have to go straight to Temple street in Dublin to be seen by specialists and that he would need to have surgery. Everything happened so quick from here we were taken by ambulance straight to Dublin. We met with a neurosurgeon who told us Paddy needed to have surgery the next day to have a drain inserted to remove the build up of fluid on his brain and also that he would need to have another surgery to remove the tumour.
On Friday the 15th of December Paddy had a 12 hour surgery to remove the tumour which felt more like 12 days, it was the longest day. Part of the tumour then had to be sent to be tested to see what type of tumour Paddy had. While waiting for the results we were told Paddy needed to have a VP shunt inserted to continue to help with any fluid build up. So off he went for another surgery.
We then got the worst news Paddy’s Tumour was a Medulloblastoma tumour which is malignant. We were devastated by this, he was already after going through so much and knowing he would have to have further treatment of some sort. It was then decided that he would need to go to Manchester for 6 weeks of Proton radiotherapy and then have chemotherapy when he was back home. We had no idea what to do, how to go about all this or anything.
We were informed then of the Gavin Glynn foundation and how they help people in our situation, we didn’t realise exactly how much they do help, I spoke to John Glynn on the phone and it was such a relief he knew exactly what was needed and when it was needed, the stress and worry all of a sudden was gone. John organised flights, staff from Aer Lingus to meet us at the airport, taxis to our hotel, he sorted our accommodation. He even checked in weekly with us to see if all was ok and if we needed anything. Without the help of John and Jayne we don’t know what we would have done.
We are beyond grateful to the Gavin Glynn foundation and it’s truly amazing what they do for families in these situations as it’s hard enough getting told your child is sick but trying to organise 6 weeks away from home would have been just as hard without their help.
Paddy is doing really well at the moment, running around full of energy and even went back to school a couple of days. We have to go to Crumlin in 2 weeks for a scan and also to plan his chemotherapy.
