On the 21st of March 2023 our world fell apart when our perfect little boy Danny was diagnosed with Rhabdomyosarcoma, a word we had never even heard of before and now our son was diagnosed with it, to say we were terrified is an understatement.
Danny had just started school and was enjoying junior infants like any other little 5 year old boy, he had started football training and was in super form. On the 21st of February he came home from school with a bump to the right of his nose, as soon as I felt it my stomach did a 360 and I knew it was something serious, I don’t know what was telling me to act fast but I just knew, maybe it’s the mammy instinct everyone talks about.
So I brought him to our GP that day and they thought he had a sinus infection and prescribed an antibiotic, after a few days we still weren’t convinced it was a sinus infection as he didn’t have any other symptoms of one so we brought him to the A&E department in our local hospital where he was referred into the paediatric unit and got an x-ray where they confirmed whatever this was it wasn’t bone related as his bones were perfect, this caused us more concern as we were thinking what could this be sur its only on his face there’s nothing there there’s no lymph nodes there, nothing only soft tissue and we had never heard tell of a soft tissue cancer before, we were bewildered by it all. Another few days went on and this lump was growing at an extreme rate and the following week on Tuesday the 7th March we got an ENT appointment for him in Temple Street Children’s hospital where they also didn’t think it was anything of concern and told us they would schedule a video call within the next 3 weeks and by then it should be gone and was probably just caused by trauma at school, again 2 days later my gut told me to phone Temple Street again and get him seen to sooner as I couldn’t shift the horrible feeling that something more sinister was going on so they told us to go bring him back up on Friday the 10th of March where they put a camera up his nose and discovered the problem was actually coming from his cheek that inside his nose was perfect, they then did a CT scan and MRI scan where they detected something and got us back up the following week for a biopsy, it’s then a few days later our biggest fear was confirmed, our gorgeous little boy had cancer.
Since then Danny has undergone numerous scans, sedation’s, bone morrow test, got a hickman fitted and has had 7 cycles of chemotherapy in Crumlin Children’s Hospital amongst other scary things that our brave wee man has had to endure at the tender age of 6.
To say we are so proud of him is an understatement, and we are so thankful every day and squeeze him a little harder feeling blessed we got this deadly disease so early and our little boy is getting a chance to beat this.
We now face another challenge as a family by being told Danny has to travel to Essen in Germany for proton beam therapy for 6-7 weeks.
Again we had never even heard of Essen before so to be told we need to travel there and stay there for 6-7 weeks with our other 2 little boys as well aged 4 and 1 was terrifying and we didn’t know where to even start trying to organise it as we didn’t even know what date we would be travelling and we knew it could be very short notice, this is where The Gavin Glynn Foundation came into our lives.
John and Jayne have been an amazing support to our family, words can’t describe how grateful we are to these amazing people and we will be forever thankful to them for all their help organising our stay in Germany with our little boys, not only support in organising our stay in Germany and financially but also for supporting us emotionally from we found out about Germany and we were anxious about it all and the fear of the not knowing.
We are setting off on our journey to Essen on Monday where Danny will also get cycle number 8 of his chemotherapy out there and then when we return home he will be getting cycle number 9 and hopefully starting maintenance after that 🙏
Danny’s courage and bravery has inspired us all so much and nothing else he ever conquers in his life could ever make us any prouder of him than we already are now 💙