Here is Jacob’s story, as told by his mum, Elaine…
In August 2018 my husband Marcus was heading to A&J Opticians in Torrington for an eye test with our youngest son Reuben, who was 10 at the time. I encouraged him to take Jacob for a check-up too as I couldn’t remember the last time he went. When it came to Jacob’s turn they did all the routine checks and when they covered his right eye and asked him to read the board he replied that he couldn’t see anything.
Initially the optometrist thought he was joking around but after a visual field test – something they don’t usually offer children – they found his peripheral vision was compromised and we were referred to North Devon District Hospital in Barnstaple for an ophthalmology assessment.
At this point I began to think about what I had seen my step-mum go through; she had a pituitary tumour when I was growing up and I recognised similarities in what was happening with Jacob.
We had an appointment come through for the November which seemed so far away. Then Jacob began to experience headaches, and vomited almost every morning - we couldn’t wait for the appointment so took him to A&E.
Jacob had more tests which were traumatising for a young boy to have, and it was made worse by the expressions on the faces of the doctors carrying out the assessments – almost like they were flinching with the results they were seeing. The tests seemed pointless, as if it was taking them ages to find out what was wrong. I was so convinced that it was a brain tumour as the cause of Jacob’s symptoms. I remember saying to them that I didn’t think what they were doing would find the problem, and finally Jacob was given a CT and MRI scan.
“Even though I had thought Jacob could have a tumour on his brain, nothing prepared me for hearing those words from the consultant and my sobbing was uncontrollable.”
We were referred to oncology at Bristol Royal Hospital for Children and it felt frustrating. No-one had told us if it was cancer, and they were using lots of medical terms which I was trying to unravel every time they spoke.
Four days later, Marcus and I were saying goodbye to our son as he was taken down to surgery for a biopsy – we were terrified. When he came back to the ward he was covered in wires and had a port in his head which was the size of a 10p piece. Even though we signed consent forms for Jacob to have the biopsy, we didn’t know what to expect and felt frustrated. Once again, and we weren’t being told much at all.
Jacob is a very intelligent young man and throughout this whole experience he has taken everything in his stride.
A sample of the tumour was sent for Whole-Genome-Sequencing (WGS) which at the time was a recent advancement in analysing tumours.
Results showed it was probably a grade 1-2 slow-growing tumour and I began to feel more positive – we were getting answers and could work out treatment going forward - Jacob could have a craniotomy to remove the mass and we could get back to our normal lives.
Jacob’s case seemed to stump the surgeons and in January, after nine hours of surgery, his tumour was classified as an optic pathway glioma. It was deemed inoperable due to the fact that it shared a blood vessel with his eyes, and removing the mass meant Jacob would go blind.
He had 18 months of chemotherapy which was horrendous. Within the first cycle of starting treatment, Jacob was vomiting hourly and lost a third of his body weight. He was given platelet transfusions as well as blood and fluid transfusions, which became standard procedure with every round of chemo.
Despite long stints in hospital, Jacob continued his schooling at Royal Devon and Exeter Hospital when he was well enough, sometimes having lessons by his bedside.
Seeing Jacob go through chemo was horrendous. Marcus searched for answers online; we were desperate for another treatment, one that wouldn’t be so hard on our little boy. From researching online, we found that steroids can help alleviate the harshness of chemo treatment and in Jacob’s case, this worked.
“That really opened my eyes to the limited treatment options that brain tumour patients are faced with.”
About a year before Jacob was diagnosed, I’d queried his height with the GP, he seemed smaller than children his age, even adults had commented on his size, but as a parent, it’s not something you want to focus on. I now understand that his growth was affected by the brain tumour.
He finished treatment in August 2020 and he was given six-monthly scans to monitor the tumour and he has quarterly eye tests and is classed as visually impaired.
After two years of stable scans, we were hit with devastation once again when a routine scan in summer 2022 showed Jacob’s tumour had grown. Our options were limited as an operation could cause life-changing injuries for Jacob.
For two months we moved our lives to University College London Hospitals NHS Foundation Trust (UCLH) for proton beam therapy.
This time, the therapy was less invasive and although it caused fatigue, headaches and nausea, it was nothing when compared to chemotherapy. Once again, we were very grateful that he could attend hospital school whilst in London.
Jacob was due to take his mock GCSE exams at the same time as his therapy, but we decided his health was our priority at that time.
When it came to the main exams, Jacob felt ready to sit them at the same time as his peers. He was given extra time to complete the papers and we applied for a timetable variation, which meant he only sat one exam each day.
He received his results in August 2023 and he got three grade 7s (Maths, Physics and Chemistry), four 6s (Computer Science, RE, History and Biology) and two 5s (English lit and lang). He is now looking forward to starting college in September, where he will be studying A Levels in physics, maths and computer science.
Although the tumour is low-grade, it has the potential to grow (which is what happened in July 2022). Jacob understands that he may require further treatment in future years, and also, cope with the realisation that secondary growths may also appear during adulthood. He is notably more accepting of needing further treatment such as chemotherapy. This is a scary fact that we have to live with every day.
I had to give up my job as a marketing coordinator when Jacob was diagnosed and now I work part-time as a receptionist at a veterinary practice. I also re-trained as a FitSteps /DanceFit fitness instructor, which I believe was a saviour for my mental and physical wellbeing throughout this whole ordeal.
Investment into brain tumour treatments needs to be prioritised to ensure that families don’t have to go through the fear and ‘scanxiety’ that we feel between every symptom and appointment, which is why we continue to support the work of Brain Tumour Research.
We are proud of Jacob for how he has dealt with every obstacle he has faced. We have already seen the tumour can grow but we have a little more hope that one day we will find a cure for this devastating disease.
Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet just 1% of the national spend on cancer research has been allocated to this devastating disease.
Brain Tumour Research is determined to change this.
Together we will find a cure