James is our 7 years old son, big brother to Ryan 6. James is a gentle, funny, caring boy, a great little character and even at such a young age shows such kindest and compassion for others.
We first noticed James eye was puffy around the end of June. We brought him to the GP and they assumed allergies but he never had allergies before, his eye quickly began to protrude and we went back to GP. We presented in Waterford general where James underwent eye tests and CT scans and they discovered a mass in James face/eye/sinus area. We were transferred to Crumlin immediately where James had another CT scan and a MRI.
Doctors where pretty convinced that this was a benign tumour but a biopsy would still need to be done to confirm 100% what we were dealing with. As elated as we were leaving Crumlin there was still a niggling doubt and fear which became a reality when we got a call to come back to Crumlin where we received the devastating news that James tumour was malignant, our lives abruptly changed.
James was diagnosed with Rhabdomyosarcoma sarcoma on Monday 17th July 2023.
We met James consultant and the following days and weeks where a whirlwind of information. James began one of the toughest courses of chemotherapy within 4 days on 21 July 2023. We waited a number of agonising weeks for a pet scan that revealed the tumour was localised.
We were told in the first initial week that at some stage over the next 6 months we would have to travel to Germany for radiotherapy. This was a huge shock and when your world is turned upside down it’s alot to process amongst everything else.
It was around this time we first heard of the Gavin Glynn foundation and in time I reached out to John to say we would be going abroad at some stage. As a family we had many concerns as we have another son with additional needs and how would it work? We’d never even been on a plane with the boys never mind relocate to another country.
John was so reassuring that whatever the issues where we could sort it out so we put this to the back of our minds as best we could and focused on James as he went through his chemotherapy.
In September we had a meeting and Germany changed to Manchester.
As a family we were so happy as it just felt so much closer and so much easier with language, travel etc.
There is very little notice about when you will be called for radiotherapy so it is an anxious wait for families. On Thursday 28th September we were told we had to be in Manchester for James planning the following Monday which meant travelling within 3 days! But not to panic John and Jayne at The Gavin Glynn Foundation had it all covered. We had our planning visit organised by John and Jayne at Gavin Glynn Foundation everything from flights, Aer Lingus crew to escort you through airport, car pick up to our accommodation.
On 15th October we made the 6 week move to Manchester for James radiation treatment.
Again Gavin Glynn Foundation organised our flights, Aer Lingus escorts, accommodation, pick-ups, shipping of boxes and anything else that was required.
What the Gavin Glynn foundation does for families is truly remarkable, it takes the heaviest of loads off parents when you are just not in any kind of head space to do that level of organising.
The foundation have been so supportive in one of the worst times of our lives. Having a foundation like Gavin Glynn to rely on and take all that pressure off makes these tough times just that little bit easier.
We will be forever grateful for the help and support it’s been truly immeasurable.
James is doing a great job getting through all his treatment. We are a couple of weeks into his radiotherapy and he does it with little to no complaint and such strength and courage we are in awe of our little hero.
We look forward to getting back to Ireland and celebrating Christmas with family as James continues his treatment.
Siobhain, Dave, James & Ryan