Jaxon from Kent was diagnosed with a pilocytic astrocytoma in May 2023, shortly after his fourth birthday. The low-grade brain tumour was discovered after the youngster walked into a metal pole which caused him to be violently sick with concussion. Jaxon had an operation to remove the tumour in June 2024 and is back enjoying school life as a five-year-old in Year 1. His mum, Ellie, feels fortunate that Jaxon’s tumour could be treated.
Here she shares his story to raise awareness of the disease…
Jax was lucky to be diagnosed when he was. He didn’t display any symptoms before he was diagnosed in May 2023. He was out with my sister, Cassie, when he hit his head on a metal pole; there wasn’t enough space on the path and a passerby didn’t move out of the way, so Jax collided with the pole.
He and Cassie carried on with their day and went to a café for lunch, but Jax was violently sick. I rushed to meet them and took Jax to Maidstone Hospital. They rushed us through, concerned he may have had a bleed on the brain. After a CT scan the doctor pulled up a seat so we were face to face. They said the good news was there no bleed but there was a red herring on the scan; something that shouldn’t be there and they had sent the images to King’s College Hospital in London for a second opinion.
His dad Liam met us at the hospital.
We were left wondering what was going on. It was Bank Holiday weekend, and we were transferred from Maidstone to Tunbridge Wells Hospital, (also known as Pembury) where he spent some of the weekend on the children’s ward and had an CT scan with dye after which, he was taken to the Evelina London Children’s Hospital in London where he had an MRI scan.
The way they were sending the images off to be checked, I didn’t know if it was an error with the machines or something they’d seen on the scan. I felt lost, now knowing any information other than there was something on Jax’s brain that shouldn’t be.
Liam and I were called into a side room and told our son had a brain tumour.
We both didn’t know what that meant and after more investigations, the doctors confirmed Jax had a low-grade pilocytic astrocytoma. They reassured us that the tumour is often slow-growing and Jax would likely grow up only needing to be monitored, living alongside the brain tumour with little to no impact on his daily life.
When Jax was a baby, he had a high temperature all the time. He had blood tests which showed something was slightly higher than it should be. Looking back with hindsight I wonder if that was related to his brain tumour, but we don’t and will never know.
A follow up scan in September 2023 found the tumour had become firmer which was picked up again with the scan in December. The tumour had grown, and surgery was the best option.
It was confusing, just four months prior, at King’s we were told Jax would be able to live alongside the tumour with no need for any treatment. We were very surprised.
Jax had surgery back at King’s in June 2024, he was down for almost eight hours.
I was scared and worried. The doctors told us it was low-grade, but my thoughts turned to things such as maybe they’d take a biopsy and tell us something different.
Liam went in with Jax whilst they put him to sleep. Jax hated it. Every time he was put to sleep for a scan he screamed. I decided to look through the window and saw tubes and wires, it was horrendous seeing my little boy like that. When he woke up in recovery, I was there to greet him.
The doctors removed all the tumour, and he had no side effects from the operation. Jax is a huge football fan, he supports Arsenal and Bromley, when he came round from surgery he kept talking about football and was excited to get back to playing.
He’s got a huge scar on the back of his head but other than that, you wouldn’t know what he has been through.
Jax missed six weeks of the end of his time in reception at Willesborough Infant School in June and July 2024 but was well enough to start Year 1 with his friend in September.
When compared to his peers, Jax is developing fine. He struggles to sit still and is a little clumsy, but we don’t know if that’s just his personality or the tumour.
We told him to tell us when he gets a headache but have been careful to not scare him into thinking every time he bumps his head that he needs surgery. He’s still very active, attending football training with the under 6’s Kings Hill FC.
For my birthday, I raised more than £400 by setting up a Facebook fundraiser. In October 2024, 15 of us took part in the Kent Downs Challenge, a 10km run which included a steep hill as part of the course.
Brain Tumour Research is a cause close to my heart. Brain tumours continue to kill more children and adults under the age of 40 than any other cancer yet the funding it receives doesn’t reflect this horrendous statistic.
I’ve read stories of other people and children diagnosed with the disease and having experienced it in my family, I feel fortunate that Jax’s could be treated. I never knew if Jax would be able to start school, but he did. Him walking into a pole feels like it was a blessing in disguise. Had his tumour been discovered later, it could have been worse for him.
Brain tumours are indiscriminate, they can affect anyone at any age. Look at Davina McCall, she didn’t necessarily have obvious symptoms you may expect with the disease and her brain tumour was discovered during a routine scan. The same happened with Jax.
It’s horrible to go through. I hope by sharing Jax’s story, I can help to raise awareness of the disease. More needs to be done to find out about the disease so we can find out why they occur and how they can be treated and ultimately cured.
Ellie Harrington
January 2025
One in three people in the UK knows someone affected by a brain tumour. This disease is indiscriminate; it can affect anyone at any age. What’s more, brain tumours continue to kill more children and adults under the age of 40 than any other cancer yet, to date, just 1% of the national spend on cancer research has been allocated to this devastating disease since records began in 2002.
Brain Tumour Research is determined to change this.
If you have been inspired by Jaxon’s story, you may like to make a donation via www.braintumourresearch.org/donate or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure