Joey’s Welsh Rugby Mascot Wish
August 2008 was very exciting for Joey as he was about to start school in September. He had his pre-school dental check-up, hearing test and an eye test booked – you could call it a pre-school MOT. His dental check and hearing were fine but during his eye test his optician spotted something.
He started asking questions such as had he been feeling poorly lately, have we noticed anything different with his vision, had he been complaining of headaches or aching in his eyes? I couldn’t understand why he was asking such questions as Joey was fine, no complaints, if anything we thought his eye sight was fantastic. Then he said he could see something by his Retina and asked what our local hospital was called and would we be able to get there within the hour.
At this point I was still feeling quite relaxed thinking maybe this is something that could be sorted, as I used to go to the hospital when I was younger for my eye appointments.
We headed straight for Ophthalmology where they asked the same question the optician had asked. They had another look in Joey’s eye and I remember thinking how long does it take, how many times do you each need to look, and WHY are they asking these questions over and over again.When they had finally finished we were given an appointment for the following week. We left the hospital still none the wiser as to what was wrong with our little boy.
In the meantime Joey’s first day in school had arrived and he was very excited, he looked so grown up in his uniform. Later that same morning the hospital phoned asking us to bring Joey in the next day as the consultant was keen to see Joey.
I was now worried as to why the appointment had been moved forward. We met with the consultant the next day and again the same questions were asked of us. He looked into Joey’s eye and then explained to us what it could be, he made a phone call to Birmingham Children’s Hospital and we had an appointment that Friday.
I broke down in tears, still not understanding what was happening, I remember asking the question “are we going to lose him?” The consultant’s reply was “if it is not treated then yes you could.”
Friday morning we were admitted to the Day Surgery Unit at Birmingham Children’s Hospital, Joey put on his theatre gown and was put under a general Anaesthetic. I was hoping in my heart that when he came back they would have corrected what was wrong and we could all go home and close the doors on this experience.
When Joey’s consultant came out he told us that Joey had a Retinoblastoma.
After he had explained what it was, we were called into a little room where we met another doctor, who was now to be Joey’s Oncologist, and a Retinoblastoma nurse specialist. They explained that Joey would need six cycles of chemotherapy, laser treatment and cryotherapy on his eye. An appointment was made for Joey to be seen in the University Hospital of Wales to meet his Oncology consultant and discuss his treatment in Cardiff. By the end of that week Joey had been back to theatre, had a port put in place and was now on chemotherapy.
Within the space of just 7 days our whole world fell apart, we couldn’t eat, we couldn’t sleep, we were constantly crying, and yet we had to carry on as if nothing was wrong for the sake of Joey and Jaicee, his little sister.
Joey made a thing of his Port. He was into Toy Story and he pretended he was Buzz with his magic button – he used to stand on the foot stool, shout ‘to infinity and beyond’, press his button, imagine that his wings popped out and would jump across the living room. When he had to go for his chemotherapy he used to call it his magic powers and that they were killing the baddies in his eye.
Although it was very unpleasant and Joey was quite sick for the first 48 hours after his treatment, he was extremely brave.
He fortunately only had a temperature twice and had to be admitted to hospital for IV antibiotics as a result. After his first course of chemo Joey was so sick he was bringing up blood, he was totally lifeless so we rushed him in to hospital. He was totally zonked on the bed, he was so poorly.
Back up to Birmingham and some good news. After the first cycle of chemo the tumour had shrunk to almost half its original size! He had laser and cryo to kill the dividing cells and we were to return in a month.
Joey didn’t go to school whilst he was having his treatment because we didn’t want him catching anything. There were chicken pox and lots of coughs and colds going round, which could be life threatening for him.
Joey was responding well to treatment. His vision was quite bad though at this point so he was made to wear an eye patch to see if it would improve and it did. His vision was corrected to above driving standard. We were so pleased; things were starting to look up for Joey.
Each visit got better and better, even though Joey had the full 6 cycles of chemo on our last visit the consultant came over to us with a big smile and said “there was nothing to treat”. I jumped up shook his hand and once again cried, but this time it was a cry of relief. We went home thinking YES that’s it, lets close the doors on this terrible experience.
Six weeks later we were back in Birmingham for the first follow up appointment, only to be told that it was starting to grow again and there were a few more seeds.
We were devastated, we realised we were in this for some time to come. Joey had more laser and cryo. This time it came back with vengeance and was being very stubborn, not responding to treatment. It was mentioned that if there were no signs of improvement that Joey would have to have a radioactive plaque put behind his eye to try and kill the tumour. The doctors even discussed removing his eye. The plaque was ordered but fortunately, he started responding well again so it was not used on him.
During Joey’s time since diagnosis and starting his treatment, Kay, who was our assigned social worker, mentioned to us that Joey was to make a wish.
She explained who the charity was and that it was for sick children. She then gave us a pack for when Joey was ready to make his wish.
It wasn’t until Joey had finished his treatment and was given the all clear that he made his wish. He is a keen fan of Welsh rugby and he wished that he could be the Welsh mascot at the Millennium Stadium in Cardiff and lead his heroes onto the pitch. Joey has always said from the time he could talk that he wants to play rugby for Wales.
One morning, about a week after Joey had his fifth cycle of treatment, he asked if he could go to school, so I rang the headmaster and he said to take him in the afternoon. Joey was seen to be the ‘New Kid’ as he had only been in for a day or two at the beginning of the term. He loved it; he had such a good time he wanted to go back every day. We thought yay, we’re getting our little man back.
Our visits back and forth to Birmingham continued after this set back. His tumour seemed to be very stubborn and took some time to kill. Then in May 2010 we were told that it had gone again, we went 11 months with no treatment which was great.
However on a follow up appointment we were told it was back again. We couldn’t believe it. So yet again Joey was back in for treatment.
On 28 May 2012, Round Table Children’s Wish rang and asked if Joey was free on Saturday 2 June 2012 to have his wish granted!
We wondered how we would tell Joey; we didn’t want to say anything until we had all of the confirmation in writing. We were so excited for Joey, his wish was about to come true and he hadn’t got a clue.
After a week of deciding how we were going to tell Joey about his wish, Steve and I agreed that we would call Joey’s school and ask Joey’s headmaster, Mr Davies if he could tell him in school assembly. He said he would be delighted to.
On the day, Steve and I hid behind the curtain in the hall so nobody could see us; we saw Joey and his class come into the hall along with the rest of the school. As the assembly was coming to a close Mr Davies showed a clip of the beginning of a Wales rugby game and pointed out the mascot of that game. He asked the school if anyone knew what was going on in Cardiff the following day, lots of hands went up.
“Wales are playing the Barbarians in the Millennium Stadium.” one little boy said.
“Who’s going to watch it?” asked Mr Davies, again all hands went up in the air.
“Who would like to be a Welsh mascot and lead the team out?” asked Mr Davies, all hands went up again.
With that the school secretary handed the letter to Mr Davies. He opened it; it was on WRU headed paper, Mr Davies then asked “Does anyone know where this letter has come from?” showing the school the headed letter, hands went up, one little boy said “It’s from the Welsh Rugby Union.”
“It’s addressed to someone in this school.” said Mr Davies.
There was a complete silence……. “Joey Jones” said Mr Davies “Joey Jones, come out the front for a minute.”
Joey got up totally oblivious to what he was about to find out, Steve and I were almost in tears hiding behind the curtain, I was shaking, trying to keep the camcorder still.
Mr Davies continued “When you were very poorly, you made a wish. Do you remember what you wished for?”
Joey replied “I wished to be the welsh MASCOT at the Millennium stadium and walk on to the pitch with my heroes.”
“Well Joey, tomorrow you have been invited to do so, your wish has been granted.” said Mr Davies.
The whole school shouted “wwwhhhhhhooooooooaaaaaaaaaaa!” and clapped.
I couldn’t hold back my tears, Steve and I popped out from our hiding place, Joey had the biggest smile I have ever seen, he went red and you could see his shoulders moving up and down as he was breathing.
Joey told Steve later “I really felt like crying when Mr Davies told me my wish had been granted.”
Wish Day had finally arrived. Joey was up before any of us so excited, smiling from ear to ear.
He introduced himself to the team saying “I’m your mascot today; I’m leading you all onto the pitch!”
He really was spoilt and treated like a VIP. The entire team of Joey’s heroes within a metre of him! What an experience! Once Joey had got changed he was then taken down to the pitch side where he and Steve played with the rugby balls, met a few of the players and coaches, and even got to meet Shane Williams and Duncan Jones, his real heroes!
What a tremendous day we all had, RTCW also sent Joey some spending money so that he could buy whatever he wanted from the WRU shop. He treated himself and spoiled his sister. They even sent a bit extra for us all to have a treat after the game.
What an awesome experience we all had. A huge thank you to RTCW and the WRU for making our little man’s dreams come true, he will never forget his ‘Special Day’ and hasn’t stopped talking about it since.
Joey is continuing to do very well with his recovery and we are hoping all goes to plan.
For more information about Retinoblastoma (Eye Cancer), NHS Choices has a useful guide –