This is Alex, our beautiful, funny, mischievous four year old little boy. He loves horses and dreams of being a jockey when he grows up. A dream I have no doubt he will achieve as he is such a strong determined little boy. He blows us away each day with the courage he has shown over the last five months.
He was diagnosed with a Ewings sarcoma of the neck the 31st of May this year. A very large tumour in between the C1 and C2 in the neck and pressing on the spinal chord.
Prior to his diagnosis Alex had been a very healthy child with no issues since he was born.
We began to notice what appeared to be a creek in his neck a few months prior to his diagnosis but just assumed like any lively child he had slept in an awkward position as he was like an octopus at night! He also started to get quite tired and would sleep in longer in the mornings than his brother. The main concern for us was however when he started waking up multiple times a night screaming with the pain in his neck. When will my neck be better mammy and will I ever feel normal again were some of the things he said to me during those tough nights.
He spiked a couple of temperatures as well over this period so we were in and out to the GP and A&E department multiple times all to be told it was most likely a viral infection. After the third or fourth trip we noticed a swelling on the back of his neck which we thought was unusual so back to A&E we went and it was at this point at the paediatric consultation that they decided to keep him in hospital and do an ultrasound the next day. This proved to be inconclusive but the paediatrician met with us and advised it looked like a case of swollen glands and this was very common in children. We felt finally we were able to breathe a sigh of relief. However this relief was not to last.
A follow up ultrasound and MRI scan the next day showed that there was a tumour in his neck. I will never forget walking in to that room in Galway hospital. The look on the doctors face instantly told me we were going to get bad news. After that the next few weeks were a complete blur. We went from Galway to Temple Street the next day and then on to Crumlin where our consultant waited for us to arrive at 11pm at night to explain how serious his cancer was. We didn’t sleep a wink that night. After that Alex had a biopsy, lumbar puncture, a freddy fitted to enable him to receive chemotherapy every two weeks and God knows how many other procedures those first few weeks. He also had to have daily injections which was very traumatic for him.
My parents stepped in immediately to look after my other son Lucas in Galway something we are so grateful for. A few months after we were told Alex would need to travel to Germany for special proton beam radiotherapy. We were so overwhelmed with this news but were introduced to John from the Gavin Glynn foundation at this point who from our first conversation put us at ease.
He organised everything for us, from flights to accommodation, to transfers from the airport and expenses. We are so grateful for this help and will never be able to express how much he has helped us during this awful time in our lives. We are currently in Germany on week two of seven and counting down the days until Alex can ring that bell. Through the darkness we have seen the light through the help, support and kindness of so many friends, family, colleagues and all the wonderful staff of Crumlin hospital especially St.John’s Ward.
We will never forget all those that are helping us through this nightmare. My final message to other parents would be don’t take no for an answer. You know your child better than anyone else. If you think something isn’t right pursue it until you get the answers you need.