This is Rio, our carefree 7-year-old laid back son, younger brother to Louie and the comedian of the house.
On Saturday 25th May I woke Rio for a hurling match, he got up complaining of being tired and having a headache. He had some breakfast and had some paracetamol, and we headed for the game. As the game was about to start, he began to vomit so we returned home to leave him rest. He came round by the afternoon but was sluggish for the rest of the day. Sunday was pretty much the same. Monday, he woke feeling much better and we headed for school but just before he got out of the car he felt nauseous again and said his headache was starting to come back. At this point I rang the GP and after giving his symptoms the doctor was happy that it was a virus and give it a week and come back if he hadn’t improved. At this point I did recall I had been there approx two weeks previous with an earache that lasted just one night, and the doctor had diagnosed him with sinus congestion that was causing ear pressure. It’s hard to know now whether the whole lot was linked.
We returned home happy enough it was a virus.
Tuesday morning came, and Rio again said he felt better and was going to school. Just as he was getting into the car he vomited again. At this point I started getting a very uneasy feeling. Rio is an excellent patient and doesn’t lie down to much but the headache he told me wasn’t going away. I rang the doctor and expressed that I just wasn’t happy with him, and they gave me another appointment the next morning.
I had a call from my friend later in the day to see how Rio was and i strangely said to her Iv a very bad feeling over me that he could have a brain tumour. He never complains about this long. She told me I was crazy, and I pushed it to the back of my mind. That night Rio whined in his sleep the whole night.
Wednesday came, and Rio woke the same way, headache and vomiting.
The next visit to the GP resulted in the same diagnosis as the first. A virus. I told the GP I wasn’t happy with that, and she gave me a letter to go to A and E.
On arrival in the hospital the doctor checked him over. His balance, Co-ordination, eyes. He passed all the checks. Similar diagnosis, virus with the possibility of a migraine and a letter to visit a migraine clinic in two weeks’ time. I was relieved to hear migraine and was almost about to leave when we started to replay the previous weeks and the earache and more tired then normal and I dug the heels in a bit and said I’m just not happy with that. We were kept overnight and the next morning when a doctor came to the ward to check him over, I reckon they seen a change in his eyes as he was promptly taken for an MRI.
5.30pm 3 doctors and a nurse called me into a side room, and I knew the news was bad. They told me they had found a large mass on Rio’s brain, and they were preparing an ambulance to take him to Temple Street. For a short moment in that room my world ended. I didn’t know how as a family we would cope.
After the longest journey of my life we arrived in temple street. Rio deteriorated rapidly during the night.
The next morning he was rushed to have a drain fitted to relieve pressure on his brain caused by fluid build-up. He was too unwell to have a biopsy but tumour Markers in his blood were able to diagnose him with a rare germ cell tumour in his pineal gland.
He recovered for a few days in temple street where he received excellent care and was transferred to Crumlin where he was fitted with his double Hickman to begin chemotherapy. Throughout all this time Rio remained his upbeat, happy positive self, determined to get better as fast as possible to get back to his friends and cousins. He received his first round of chemo, had a stem cell retrieval. His second round of chemo, a third round of high dose chemo. A stem cell rescue. At this point the tumour had shrunk enough to have his surgery. We welcomed the day as it was an essential part of getting Our Rio Back to full health. The operation went really well, and he was quickly able to have his last high dose chemo and stem cell rescue. Now we are onto the final part of treatment plan- proton beam therapy In Manchester.
We knew this was on the cards from the day he was diagnosed but not once did we have to worry about planning or Co-ordinating any of this. One call and email to John Glynn from The Gavin Glynn Foundation and everything was taken care of. When your child is going through anything like this you just get through the days. To try plan a 6 week move would be near impossible. The work John and his wife Jayne do for the families in need is truly amazing and we will be forever grateful.
We are grateful to have the opportunity to get Rio back to full health. There has been ups and downs of course but we are lucky to have a very strong determined little boy and brilliant family support.
We look forward to the day he rings that bell and gets to continue his life to the fullest.
