Jake’s story
Jake Lee, who was 22, had suffered bouts of illness for years before his diagnosis. He experienced headaches and vomiting from his early teens, and eventually co-ordination and balance issues, before he learned he had an astrocytoma in 2019, when he was16.
Jake, an Arsenal fan, was a talented footballer who dreamed of going professional, and he was heading in the right direction.
A dedicated member of his local football team, Princes Park Youth FC, he also played for his school and was attending football trials. However, schoolwork was a struggle for him, and no-one could understand why.
According to his mum, Bal Sandhu: “From primary school onwards, even though he was a really hard worker, Jake was only ever getting low grades. His teachers knew how committed he was and how hard he tried, but all his effort never showed in his results. I thought maybe it was because he was so set on being a footballer, that he wasn’t interested enough in reading books.”
Worsening symptoms
To begin with, Jake’s headaches didn’t seem to affect him too much. He always bounced back afterwards, continuing to attend school and keep up with his football training.
But when the sickness and headaches worsened in September 2018, Bal took him to his GP, who ordered a blood test. The test showed that Jake had low iron levels. “They sent us on our way,” says Bal.
But as the months passed, Jake continued to be sick. He was also very tired and quite down, which was out of character for him, and was struggling to remember things. Bal booked another blood test, and took him to the opticians after one of his football coaches spotted Jake was having trouble with his vision.
It was a shock to be told by the optician that Jake had very poor eyesight, as he had never mentioned it before. But worse was to come.
Bal said: “At the appointment, we were referred straight to Moorfields Eye hospital because the optician spotted pressure on Jake’s nerve. They did a CT scan which revealed a mass. It all happened so fast. By midnight on the day of the scan, Jake was being admitted to Great Ormond Street hospital. Two days after we found out he had a brain tumour he was having an operation to remove it.”
Surgery, treatment and rehab
Jake’s surgery led to him having a seizure, which led to paralysis down the left side of his body. It was 10 days after the operation before he was able to talk. 30 rounds of radiotherapy at University College London (UCL) followed.
To aid his recovery, Jake was given a place at The Children’s Trust, which provides residential brain injury rehabilitation services.
He used a wheelchair when he arrived, but after six months of intensive rehabilitation, including physiotherapy, occupational therapy and speech and language therapy, he was able to walk on his own, reserving the wheelchair for long trips only.
He and Bal moved into a specially adapted house and he attended physiotherapy sessions with a local therapist. The sessions were moved online during the Covid-19 lockdown, but Jake remained motivated, doing his own daily workouts to improve his mobility. His love for football never left him and he was determined to get back on the football pitch.
However, in October 2023, a routine scan delivered devastating news. His tumour had returned, this time more aggressively. After surgery a month later to deal with the regrowth, he was told it was now Grade 4.
Bal said: “After that, his health deteriorated quite rapidly. Although he had a lot of treatment, including trying a different chemo medication, the tumour continued to grow. 2024 was a very difficult year. He kept asking “can I still get back to football?”
“By November 2024, he worsened again. He couldn’t have proper conversations anymore. He went into palliative care. In the hospice, he actually did a little better for a little while. He was able to see Mother’s Day in March, and my birthday. He passed away on April 1st this year.”
Raising awareness of early symptoms
Despite everything he went through, Jake remained positive throughout his illness. Bal said: “Everybody loved Jake. We had the best relationship. He was my world. We did everything together. Because of his illness, Jake missed out on so much. But he was the bravest man I know.
“Looking back the signs were all there. Jake was unwell, off and on, for years before his tumour was found. He had headaches, vomiting, and memory problems, but no-one put two and two together.
“An earlier diagnosis would have meant earlier treatment for him, and might even have saved him emergency surgery.
“We need to do more to raise greater awareness of brain tumour symptoms, to help other families facing this in future.”
Find out more about Better Safe Than Tumour, our UK-wide campaign to reduce diagnosis times of brain tumours.