On the 19th of September 2019 our world as we knew it was destroyed as our beautiful Joey was rushed to hospital. We could never have imagined what would follow and that he would have been diagnosed with a brain tumour.
It started as a normal morning, his dad dropped him and Lucy off to me first thing so I could take them to school, it was always a mad rush, so we hopped in the car and took the 5-minute drive to school.
We walked up to the playground with our friends and his cousins as normal laughing and playing, when I got there the headmistress asked to speak to me (always the utter fear even as an adult, I thought it was about lunch money!) She asked if Joey was feeling ok as yesterday on a school trip, he struggled to climb a climbing frame which normally he mastered very well, I told her he was with their Dad last night but seemed fine this morning and I’d ring the Drs to get him checked anyway and we watched him running round without a care in the world.
I went home and phoned the Drs and had to wait for a call back, after an hour the school phoned me, they said he was OK but had fallen asleep in class, and he felt hot so tried to take his jumper off, but he couldn’t use his arm properly.
I rushed to the school, picked him up and rushed him to A&E. I will never forget the fear of sitting in that hospital thinking my son was having a stroke. After lots of Drs coming in and poking and prodding him and a CT scan, we sat in a room with three Drs and two nurses to be told he had a brain tumour, they didn’t know what type yet - but it was in his brain stem.
The following day Joey was transported to specialists at Kings Hospital in London to have further analysis and find out more about his diagnosis. Unfortunately, after many doctors and a brilliant oncology team had completed their assessment and done a biopsy.
Our gorgeous boy was diagnosed with DIPG - a very rare aggressive tumour that grows in the brain stem.
With such a heavy heart we had to share with our family and friends that this is inoperable and that nobody had ever survived it. After 11 days we were sent home to navigate what little time we had with our gorgeous boy. We spent every minute we could trying to keep him smiling and making the memories we now treasure and treating Joey like the Superhero he is but devastatingly, just 11 weeks from diagnosis Joey would lose his brave battle
We were only offered the standard course of radiotherapy treatment to improve Joey’s symptoms and quality of life for what little time he had left.
Joey never knew his prognosis, only that he had a horrible lump in his head, we decided to call it ‘Jack’ and that he was making him feel very poorly. All we could promise was that we were doing everything we could to try and make Jack go away.
Although in some cases radiotherapy treatment to prolong life and improve the effects of the tumour is effective, in Joey's case it just really wasn’t. We had the party of all parties when he finished his treatment, inviting the whole school and all his friends and neighbours, it was a superhero party for the biggest of superheroes. He chose everything for the party from a magician, photo booth, bouncy castle, bubble machine and fireworks. The whole community came together to make it the best for our boy.
Joey had an idyllic life on the farm, he loved all the animals, machinery, football, Minecraft and BBQs with all the family and playing with Lego, he had soooo much Lego! A highlight every week were his water fights with his grandad and sister Lucy. Whatever the weather, rain, snow and sun they were always out there for hours having the most fun. Joey was the most caring little boy with the biggest heart, he loved all of his friends and spent a lot of time with his cousins and best friends but, his best, best friend was Harvey, our dog, they were truly inseparable, the only time they were apart was when he was in the hospital.
No surprise when we asked Joey what his dream holiday would be, he said he wanted big sandy beaches and to go out on a glass bottomed boat to see the fishes in the clear water. Sadly, he became too poorly, too quickly to make that trip.
One of his favourite programmes to watch with his Dad and Lucy was Treehouse Masters, so with the help of Make a Wish Foundation we booked a magical early Christmas trip to Centre Parcs with his family and best friends for a few days, it was truly amazing and they pulled out all the stops for us all. Sadly, when we returned home it became apparent that the radiotherapy hadn’t worked, and he was declining rapidly.
As a family seeing the decline was beyond painful, we decided we should try to 'celebrate' an early Christmas and invite everyone to spend a final Christmas with our amazing boy. We had Christmas on 8th December, and we are so glad we did as within 11 weeks of our world being turned upside down on 14th December 2019 at 5.31pm at home surrounded by all his family and his beloved dog, Joey lost his life to DIPG.
We bravely chose to donate Joey's tumour for research in order that we might help researchers understand more about this insidious disease that continues to take the lives of children on a regular basis!
“Your smile was infectious, it brightened up the room. Your giggle, and your laugh, could lift any mood. Life will never be the same for us, and I just don’t know what to do. I can’t imagine going on without you by my side” Joey’s Mum Becky.
Our promise now is to do all the things that Joey always wanted to do, we will love and miss him forever, and of course to support the research effort in any way we can so that other families may have the one thing we never really did…hope!
Help Us in the Fight to Cure DIPG
We won’t stop until there’s a cure for DIPG, and you can be part of the fight. Abbie’s Army is funding critical research, but we need your support. By donating today, you help bring hope to families and push us closer to ending this heartbreaking disease. Join us in the battle—donate now.
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