Samuel’s Promise is raising funds for research into low-grade brain tumours and surgical advancements in memory of 18-year-old Samuel. Samuel was 14 years old when in July 2018 he was diagnosed with pilocytic astrocytoma. His mum Sharon shares his story…
Our world fell apart in July 2018, when we received the devastating news that our incredible son, Samuel, was diagnosed with a brain tumour. Before his diagnosis he’d been a happy, carefree boy, surrounded by friends and enjoying the normal life of a teenager. He was in good health, fit and strong, and excelled in all sports, including tennis, cricket and athletics. It was football, though, that was his real passion.
Samuel was training with a Leicester development team in the Midland Junior Premier League. This was a big commitment, the travelling for training and matches meant missing out on other things, but he was determined to take his football to the next level. His ambition was to play professional, semi-professional football or futsal.
However, things started to change for us when Samuel began having headaches, and it was on our way to football one evening he asked me if he had a brain tumour. We took him to the GP, and on their advice, he had his eyes checked by an optician, who sent us directly to A&E. A scan was performed, before doctors delivered the most gut-wrenching words to him: “There’s no easy way to say this, so I’ll just say it, we have found a mass in your brain.” Emergency blue lights took us to Queen’s Medical Centre in Nottingham, where he had an eight-hour operation.
We all quickly became submerged in a whole new world of hospitals, specialist consultants and brain surgeons, and it soon became apparent that nothing is ever straightforward with a brain tumour diagnosis. Repeated admissions to hospital and what we can only describe as ‘trial and error’ brain surgery became our life.
At the end of October, Samuel’s obstructive hydrocephalus was finally under control, and he came home and began the hard work to build his health and strength back. He was then on a ‘watch and wait’ programme, which meant MRIs every three months and hoping and praying that the tumour would behave and not grow.
Every three months we attended clinic to be told his tumour was growing, but we shouldn’t be worried, and “no action was needed”, yet! Instead, Samuel was advised to live his life. He was amazing and did just that, even getting back to playing football. Though he knew he’d never get back to the level that he’d been playing at before, he just loved playing with his mates again. It was amazing to see him back on the football pitch – even though headers were strictly banned!
His strength of character and resilience amazed us all and together, with his sister Emily, we were a strong, solid unit. Our fears and anxiety were at times overwhelming, but we found strength in each other as a family to pick him – and each other - up and keep going.
The results of Samuel’s scan in October 2019 showed that the growth of his tumour was persistent and consistent, so it was recommended that he start chemotherapy treatment. This was gruelling and relentless, but still couldn’t stop the tumour from getting bigger and again in August 2020, surgery was necessary.
He requested that this surgery be done ASAP in the school summer holiday, so that he could be ready to start a new college course without delay, his determination was incredible. He began his chosen sports course at college with stiches in his head! All was going well until a further decline in March 2021 forced yet another surgery in April 2021.
His life from here changed dramatically, perhaps this was one surgery too many and Samuel suffered from life-changing effects. Treatment options were becoming limited and his care became complex. His tumour had progressed to his brain stem and was now inoperable, and the only treatment pathway left was proton beam therapy at the Christie in Manchester, where he completed 30 gruelling radiotherapy treatments with huge bravery and courage; he endured so much because his will to live was so strong.
Sadly, after three years and eight months of punishing, intense operations and treatments, Samuel passed away in February 2022, aged 18.
The pain of missing him is intense, he was loved so much by so many that to lose him is unbearable. We try to remember all the good times we had together, even those moments during his treatment, a large part of which was during the height of COVID. In some ways, lockdown was almost a blessing for us, and it was a leveller for him - everyone was at home, everything was cancelled, he wasn’t missing out on things. The pressure of school was taken off him and he’d play Xbox online with his mates.
We developed this nice little routine at home, with Emily back from uni. After Samuel was diagnosed, she became his fiercest protector, just the most amazing older sister. Their bond was so strong, and they had so much common. Sometimes, you look back and think COVID stopped us from making memories, but in another way, we made memories at home; all four of us and we have some funny family TikTok videos that we now cherish!
During Samuel’s treatment, his football club, Mountsorrel Juniors, was incredibly supportive. They created their own logo of an orange heart with SP10 in the middle, to recognise his shirt number and the club's colour, and this idea has become important to us as a family.
On Mother’s Day, a month after Samuel died, we took a picture of us leaving SP10 heart in the sand at St Ives, and then asked friends and family to do the same wherever they went on holiday. Dozens and dozens of people have done it, even Samuel’s mates who went on their first lads’ holiday remembered him and honoured him, which was lovely. We’d love to see this grow and see how far his memory can travel. We want people to take him on holiday, and, most importantly, talk about him, wherever they are in the world.
The football club also supported our family when Samuel was in Manchester for proton beam therapy, raising money for us. Shortly after Samuel died, they also hosted a fundraising day in his memory, which really brought the club together and they have committed to do it every year.
We’ve set up the fund to harness this support and goodwill, to help to make a difference for young people and their families in the future. We’ve lots planned, including what we hope will be an annual 10k walk – the SP10 Walk and Talk. We also have several local businesses and other sports clubs that have expressed an interest in helping too, so there’s a lot of potential.
The amount of support, kind words and people wanting to do something positive to help remember Samuel really speaks volumes for the amazing, kind, loving and caring young man that he was.
It's important to us that any funds raised go towards research into lower grade brain tumours. When Samuel received his diagnosis, he was made to think that he should be happy and grateful that his was 'only' a grade 1 tumour. He was terrified, and I remember him saying to me, "But mum, I've still got a brain tumour and they can't get it out, why is everyone happy?".
Samuel's options were very limited: surgery was the preferred first-line treatment, but when only 40% could be removed, it was the tense 'watch and wait' approach. He was growing rapidly, approaching puberty and, as his body grew, so did the tumour. It may have been growing slower than a grade 4 tumour, but it was still growing, and nothing could stop it. As his tumour was slower to divide, it was also slower to respond to chemotherapy, which had very little impact but was extremely toxic.
It felt like the tumour was in charge the whole way through and we were just sitting, holding our breath, waiting for it to decide what it was going to do. We want to ringfence this money so that it supports research that makes a real difference to children with low-grade brain tumours. We want any young person diagnosed in the future to be able to sit down with their doctor, and have them explain some great, effective options for their type of tumour, rather than be subjected to treatment that is toxic and ineffective.
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You can make a donation or pay in funds raised by cheque, payable to CCLG, to CCLG, Century House, 24 De Montfort Street, Leicester LE1 7GB. Please ensure you make it clear that the donation is for Samuel's Promise so that your donation is allocated to the correct fund.
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