Brain tumour: Jake

Published: November 2021. Date of brain injury: January 2019 (aged 16 years old)

Like most teenagers, my son Jake was a very social, independent boy before his operation.

Over the years, Jake had complained of bad headaches and would often throw up as a result of them. At first, I didn’t think anything of it. I thought it must be a bug or a bad case of food poisoning. Jake would take paracetamol to stop the sickness and that would be it until the next time.

But, in September 2018, when the sickness and headaches didn’t stop, I took Jake to the doctors. He was seen by a doctor who ordered a blood test. When the blood test results came back, we were advised that Jake had low iron levels.

In the meantime, he was going to school and playing football regularly. Jake, a lifelong Arsenal fan was on track to become a professional football player. He was attending football trials and playing for both his local football team and his school team.

Getting a diagnosis
A few months passed and Jake continued to be sick. He also started to struggle remembering simple things. He would forget his wallet, keys and Oyster card all the time. It was happening a lot and I thought, ‘This isn’t like Jake’. 

In January 2019, I took Jake for another blood test and took him to an appointment at the opticians as Jake’s football coaches had noticed he was having problems with his vision.

The optician said to me ‘Do you know Jake has very poor vision?’. I was shocked as Jake hadn’t mentioned anything before.

At the appointment, the optician saw there was pressure on Jake’s nerve. They referred us straight to Moorfields Eye Hospital where we had a fast track appointment the next day. There, Jake had a CT scan, and this was when my world was turned upside down.

They found a brain tumour.

Straight to surgery
That same day we were told to go straight to Great Ormond Street Hospital where there would be a bed waiting for us. It all happened so fast.

Two days after finding the brain tumour, Jake had an operation to remove it. When he woke up, he couldn’t walk or talk. He was in such a state and was being fed by a tube.

But slowly, he started to come around. It was 10 days after his operation when he began to talk again. He was moved to University College Hospital (UCL) in London where he had 30 rounds of radiotherapy.

Learning to walk again
In May 2019, Jake arrived at The Children’s Trust for intensive rehabilitation, including physiotherapy, occupational therapy and speech and language therapy. When we were at the hospital his mood was very low, but I noticed as soon as we arrived at The Children’s Trust, Jake’s mood completely changed. He was much happier.

To begin with, Jake needed support for everything and was reliant on his wheelchair for mobility. However, he slowly started to make progress and before long he was taking tentative steps with help from his therapists.

Jake made brilliant progress during those six months and by the time we left The Children’s Trust in December 2019, he was able to walk on his own, only relied on his wheelchair for long journeys, and even managed to join in with a friendly game of football between the staff and young people. His confidence had skyrocketed!

Going home and the start of the COVID-19 pandemic
When we left Tadworth, we moved into a new house specifically adapted to suit all of Jake’s new needs. We still had regular medical appointments to attend, and Jake continued his rehabilitation with a local physiotherapist. His main goal has always been to play football again.

However, this all stopped when the first lockdown was announced and Jake's weekly one-to-one physiotherapy sessions were replaced with intermittent video calls. His physiotherapist did try and keep in regular contact, but just it wasn’t the same.

We had lots of activities planned to progress Jake’s mobility, but we couldn’t do many of them. So, during the lockdown, we did what we could and went on daily walks – hopeful that Jake’s walking would continue to improve. It was good for both of us to get out of the house and get some fresh air.

Staying positive and looking to the future
Thankfully Jake was very self-motivated through the lockdown period. He even created a video to share his top tips for keeping busy while all the restrictions were in place.

Jake did his own workouts every day to increase his mobility and has continued with these as part of his new routine since going back to school in September.

Jake now attends college four days a week, which he really enjoys, and has even started to go back to football training sessions in his local area.

It has been a long road and we still have a way to go but Jake is the bravest young man I know. While he feels he’s been robbed of some special time, I have no doubt he will achieve every new goal he sets himself.