Luke from Borehamwood was just nine when he died of a diffuse midline glioma (often known as DIPG) following a dramatic weight gain which saw the then six-year-old schoolboy wearing clothes for a child more than twice his age. Concerned mum Sam thought it could be due to excess eating and lockdown restrictions. When Luke started to experience sore eyes, Sam took him to an optician who referred him to hospital for further tests. An MRI scan confirmed a large inoperable tumour on his brain. Luke had combined radiotherapy and chemotherapy treatment; however, the cancer was too aggressive, and he died in hospital in August 2024. Luke’s brave brain tumour battle has inspired a whole community to fundraise to help find a cure for the devastating disease.
Here is Luke’s story, as told by his mum, Sam…
Luke started to gain weight but, because it was lockdown 2020, I didn’t think anything of it at first. I thought it was a combination of him eating more and moving less. His weight gain became rapid. In May 2021, I consulted a nutritionist who ran tests which showed low iron levels, and I started him on vitamins and pro/prebiotics but nothing else.
He went from wearing clothes for his own age, six, to needing almost a whole brand-new wardrobe aged 11-12 years.
At the school gates, other parents commented on his appearance, it was a noticeable difference because he had always been so slight.
Soon after, he told me his eyes felt sore, and I’d see him rubbing them around bedtime. I thought he may have needed glasses. Our family has a track record of poor eyesight, so I booked him in for an eye test at Tesco Opticians in Borehamwood. Whilst waiting for the appointment, a teacher at school noticed Luke was a bit more subdued. He had ADHD and was quite hyperactive most of the time, so it was out of character for him.
Luke occasionally complained of headaches, so when I picked him up from school, I’d check his water bottle and see it was still full and encouraged him to drink more fluid.
My parents had also noticed that when Luke was walking downs stairs, he turned his head to the side as if he couldn’t see properly if he looked head on.
Looking back with hindsight, I wonder if all these little things that built up over time were warning signs of his brain tumour. They were all sporadic and happened over a long period of time.
The optician referred Luke to the ophthalmology department and Barnet Hospital. They couldn’t determine if he needed glasses as he was so fidgety during the appointment. It was when we got to the hospital, they said Luke had swelling in the vessels at the back of his eyes. Further tests found that one of his pupils was bigger than the other.
I was shocked. I thought he might need glasses, but things seemed more serious.
An MRI confirmed there was fluid on his brain, but they couldn’t find a cause. We stayed in hospital and at 3am I was woken up and we were taken to Great Ormand Street Hospital (GOSH) for Luke to have a shunt fitted.
Whilst waiting for results of the biopsy, we had a family holiday, me, Luke and his sister, Daisy.
We came back to results that Luke’s tumour was a diffuse midline glioma, although they never used the word cancer.
In mid-September, he had six weeks of combined radiotherapy and chemotherapy at University College London Hospital (UCLH). He was such a warrior during treatment, despite being sick on the first day.
I was honest with him throughout his diagnosis and told him that there was a tumour on his brain and that the doctors were doing what they could to make him better. He was never scared. As a Christian, Luke took comfort in our faith. He said to me ‘Mummy, I’m not afraid to die because I’ll go to heaven and be with Jesus. Don’t be sad. Think happy thoughts of me to make you smile.’
Treatment shrunk the tumour by 30% and scans remained stable as he underwent a full year on temozolomide chemotherapy. He was back at school, his vision was fine, he loved playing football, theme park rides and computer games. He was back to enjoying the outdoors and we took trips to the skate park so he could enjoy his scooter.
By the end of 2022, I noticed his balance was off. When he stood up, he tried to catch himself but sometimes fell over. A teacher at school noticed one of Luke’s eyes had turned in we went back tot hospital for a check up scan.
Whilst collecting his tablets at GOSH, I was called into a meeting with the doctor. I knew it wasn’t going to be good news. It was the start of January 2023 and Mr Hargraves told me the tumour was in Luke’s brain stem and there was nothing more they could do.
They wanted to trial Luke on different medicine and was clear it wasn’t a cure, but they wanted to prolong his life. They tried three months of lomustine but a scan soon showed this had no impact.
He was then placed on Osimertinib which is usually used in adults with a type of cancer that has metastasised to the brain and targets a gene defect. All treatment was oral form and finished in April 2023. Both were deemed ineffective, and he was taken off any medical intervention.
The support from his primary school, Summerswood, was incredible. They helped to raise money to help send us as a family to Disneyland to make memories and accommodated Luke at school as he became more fatigued.
He got baptised on Easter Sunday in April 2023, which is something he wanted to do.
Eventually the tumour took over and he lost mobility and control of bodily functions, he had to use a wheelchair and had a nasogastric (NG) tube fitted to help him swallow safely.
He died in Watford General Hospital on 26th August 2024 aged nine.
To try and articulate the pain I felt and still feel is impossible. Some days the grief is crippling as I desperately miss him and long to hold him. However, I have a deep knowing and assurance in my heart that Luke knew where he was going. One day I will see his beautiful face and hold him again - tell him how proud I am of him, how his courage and strength encouraged me to face my fears and continue living in the hope that he had.
I heard about Brain Tumour Research via the school. I was taken aback to learn that brain tumours 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.
Unless you’re affected by brain tumours, you might not know about it, I certainly didn’t. Another parent at the school lost their child three months after Luke died.
I joined the school’s 10k Steps a Day in February Challenge this year.
Every step we take in this journey is fuelled by their courage, belief, and love. Our goal is to raise vital funds for research that brings us closer to finding a cure for all types of brain tumours, so no other family must endure this heartache.
Sam Poga
February 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 touched by Luke’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