Frankie is our funny, clever, cheeky, football OBSESSED 4 year old! He was born in 2019 and has kept us busy ever since! He has a big sister Georgia who’s 14 and a little brother Casey who’s now 1…
Like any 4 year old boy he is always throwing himself around, wrestling with daddy etc. so when in Dec last year he complained of a sore back I thought nothing much of it until I discovered later that day a large lump on the top of his right shoulder blade. He was in a lot of pain with it and suddenly developed a temperature. I made an appointment in Connolly hospital and took him straight in. After a day of tests they couldn’t give us an answer and were not happy so we went in the bumbulance (kids bumblebee ambulance!) to Crumlin hospital. The next 8 days were what we can only describe as hell.
We had scans and tests and were told every parent’s worst nightmare, something that will haunt me forever, that he had a mass/ tumour that was more than likely cancer. After more tests including biopsy and bone marrow biopsy we were told the news that we were praying for every minute… “it wasn’t cancer”! We couldn’t believe it our prayers were answered, it all seemed a dream. We went home that evening and tried to digest what had happened. The doctors didn’t have a diagnosis yet but we thought “we don’t care as long as he’s clear A’
We had a follow up MRI the end of January to try and come to a conclusion… this is where I can only say our worlds suddenly stopped turning and the nightmare returned. The mass had doubled in size and a biopsy showed, what was suspected in December, was correct.
Frankie was diagnosed with Rhabdomysosarcoma, a ‘rare’ cancer of the soft tissue. We started treatment within days. It was a blur, a scary horrible blur. We were told as part of his treatment we needed to travel to Essen or Manchester to have a form of radiotherapy called proton beam radiotherapy. The first trip would be quick with little to no notice and then another trip about 2 weeks later where we would have to stay for 6 weeks!!!!
We couldn’t even start to think about how we could do that as a family of 5 (we ended up travelling to Manchester)… that’s when we were directed to John Glynn from the Gavin Glynn Foundation!
I can’t describe what John and Jayne did for us, I had heard they would help us but my god they took away EVERY stress we had when it came to booking & paying for our travel, accommodation (for 6 weeks !!!!) and expenses!
On our 1st ‘planning trip’ we were escorted through the airport by 2 amazing staff from Aer Lingus Niamh and Kiara, Frankie was treated like a VIP the whole way and even got a shout out on the plane, which cheered us all up !! The 2nd trip which was for 6 weeks we decided to drive, once again the whole process was taken care of by The Gavin Glynn Foundation. They’re just incredible!! We couldn’t believe it then and we still can’t! Nothing was too much or a hassle for John and Jayne, We’re forever grateful!!!
We’re now home and that journey feels like a blurred memory!!! Frankie is doing well, he’s got a scan in a few weeks and will start maintenance chemotherapy in a couple of weeks too. Some days are tough but he is strong, stronger than any of us will ever be.
