Thumbs up for Joel

 Joel was diagnosed with Acute Myeloid Leukaemia (AML) on 1st December 2023, aged 10, following weeks of back and forth visits to the GP. A rash had appeared on his legs and then the odd spot started to appear on his arms, which became more noticeable after exercise. The GP reassured us it was just a reaction to a viral infection as he’d had a slightly high temperature at one of the appointments and had been given various creams and ointments to apply. It wasn’t until Joel lost his appetite that there was a noticeable sign that something more serious may be the cause, as he usually loved his meals immensely.

After explaining that he already felt full even though he hadn’t eaten, we retuned once again to our local surgery and requested to see a different doctor this time. After examination, she explained that she felt his spleen was potentially enlarged and said she would arrange a blood test. The doctor called the original GP to give a second opinion, however he disputed this and again explained it was just a viral infection. The next day we received a call asking for us to go to our local hospital for the blood test, and then we spent that evening and the next day having various examinations and bloods being taken.

The doctors found it difficult to take Joel’s blood and each different test would take several attempts, all in varying places. Yet Joel remained brave, patient, and kind to them all, despite the pain and discomfort - setting the tone of how he would cope for the upcoming months of treatment and suffering that he would have to endure. This was before we even knew what was about to begin, and how his life and all of ours alongside it, would change.

We received the devastating news at that hospital that they suspected Joel to have AML, a rarer type of blood cancer, and that we would be transferred to Queens Medical centre in Nottingham for further tests and information. Our entire world changed the moment those words were said out aloud, and yet Joel remained perfectly calm. “Oh great, so I’ve got cancer” Joel exclaimed rolling his eyes, “not exactly what I wanted for Christmas”.

We knew there and then that if he could be so strong, humorous, and jovial in such a dire situation that I too, as his Mum, would need to do the same and face this challenge as just another one of our many adventures. 

Life for Joel and our family before diagnosis was a happy and content whirlwind of school, activities, pets, and vibrancy. Joel loved to swim, go for long bike rides, and have fun days out. He enjoyed walking his dogs and loved them both dearly. He was a keen member of his local scout group, always contributing and taking part, and had grown in the last few years to be confident and outgoing, sure of himself and his knowledge. He embraced life with enthusiasm and enjoyed adding to his large collections of Lego and Nerf guns. He had a lifelong passion for the police force and had been set on a career as an armed response officer since roughly the age of three! He loved his family fiercely, and was incredibly loving towards his parents, grandparents, and brothers, as well as supportive and encouraging. He had lots of friends at school and was also blessed to have really close relationships with our good friends’ children too, and we would spent many great days together.

Procedures, treatment plans, and chemotherapy started near enough immediately and it was full steam ahead. Joel had one goal, and that was to get better and resume his normal life, so we just tried to look forwards. He responded really well to his first cycle, but unfortunately that response did not continue, and so he required a stem cell transplant to get a cure. This became Joel’s new focus, just get to Sheffield and then get better.

When he felt well enough, Joel built Lego, watched movies, played Roblox on his iPad and Xbox and even spent time playing on his VR headset. We also had lots of lovely visitors. He went to the hospital school and did whatever we could find to pass the time and keep his spirits up. 

Joel could rarely leave the ward or the hospital and so would seldom get to come home. When he did on the rare occasions, he made sure to have a list prepared of everything he wanted to do, including a day trip to the seaside as well as even enjoying a game of tennis. We were astounded by his determination! 

We stayed together on the ward for nine months in total. Even when Joel’s treatment was delayed or extended, facing one set back after another, he still found the courage and kindness to be happy for other children who rang the bell to signify the end of treatment, or be happy for those who could go home and he cried for those who did not.

He faced so much uncertainty about his eye, going to appointments in other parts of the hospital on a daily basis. He had numerous painful procedures, understanding that he may lose his vision, and grappled with the idea that he may even need to have his eye removed. This was all before finally learning that he could have radiotherapy on the eye, and that would then be the last hurdle to overcome before the final part could begin at Sheffield.  

On the very same day as that first radiotherapy appointment, the culmination of months of discussions, meetings and decisions, it became apparent that Joel was suffering from worrying complications from an infection he had contracted. That, combined with a secondary condition caused by chemotherapy, ultimately lead to a brief time in ICU, followed by the devastating news that the damage was too severe to Joel’s brain for the team to help him any further. We spent his last few precious days together at Rainbows Hospice, one last trip together to a new adventure.