Samuel's Promise - Understanding The Charity Mission

“The problem with juvenile tumours is the void of research and understanding into the complexity of the developing adolescent brain. Not enough is understood about it and young people are dying everyday as a result.”

One of the benefits of working with a charity picked by our own staff is that we get the chance to meet the founders and really understand the story behind why the charity was established.

We started working with Samuel’s Promise in 2023, less than a year after the charity was founded following the devastating loss of 18 year old Samuel Priestley to a brain tumour. Their mission is to raise vital research funds into paediatric brain tumours, an area of science which remains critically under-researched.

We had the privilege of speaking with Samuel’s sister Emily about the irreplaceable loss of her little brother and the challenges that adolescent siblings face with grief.

Samuel and I were born three years apart and as his older sister, it was the perfect age gap. Growing up, we were always very close. Of course we squabbled from time to time but we had a very special bond. Mum told me that when Samuel was born, I was such a proud sister to visit him in the hospital. As a young baby, I’d pull funny faces to make him smile and laugh. I loved him from the moment he arrived in our family. 

Cornwall holds special childhood memories for us. As kids, we spent a lot of time in St Ives on family holidays. Samuel and I would play together for hours on end. Swimming and splashing around in the sea. Squished side by side in the beach tent, hiding from mischievous Sea Gulls, trying to steal our ice creams. 

We’d join in with each other’s parties and play dates, never leaving the other one out, we were very much a team. I remember one of Samuel’s birthdays, our parents held a pirate themed party with a massive bouncy castle, practically the  size of the garden. I spent the whole day jumping around with his friends and that friendship remained pretty much the same throughout our childhood.

I cannot overstate how unexpected his diagnosis was. On the face of it, Samuel was in the best health. A normal teenage boy, he played sports every day. He was doing well at school. Hanging around with his friends. Making plans for the future.

The day of the diagnosis itself was completely normal. Samuel had just been on a football tour to Holland with Mountsorrel Juniors Football Club and because he’d recently complained of headaches, mum took him to our local optician for a routine check-up, to rule out glasses.  Because Samuel was so young, and in such good health, we never for one moment expected the problem to be serious. We’d put the headaches down to him being tired, playing too much Xbox or not drinking enough water, normal teenager stuff. Mum was surprised when she was told by the optician to take him immediately to A&E. Of course she did, but still, alarm bells weren’t ringing at this point. We were planning what we were going to do the following day. 

At A&E he was given a brain scan and immediately blue lighted in an emergency ambulance to Nottingham Hospital. This was the first moment we were given a potential diagnosis of cancer. We were speechless. How had it gone from the opticians to a cancer ward?

The biggest challenge we faced at this time was a lack of clarity around his diagnosis.  Samuel’s tumour was benign, so not ‘classified as cancer’ but the only treatment options available were cancer treatments. It was a very confusing time for all of us and we came to understand that a brain tumour diagnosis is really complicated. Samuel’s tumour was difficult to access surgically and the only chemotherapy treatments available gave low percentage success rates. Medical professionals can only act with the information available to them via science and research. The challenge with paediatric tumours is the void of research and understanding into the complexity of the developing adolescent brain. Not enough is understood about it and young people are dying everyday as a result.

Watching my little brother endure 20 operations over a four year period was brutal for both him and the rest of our family. Watching my parents, desperate to do absolutely anything for Samuel’s full recovery, was heart breaking.  My role as older sister and oldest daughter became very important at this time. Looking back, I had to grow up quickly. My friends, all in their late teens and early twenties, were living pretty carefree lives and there were times when I felt very distant from all of that. 

Samuel was everyone’s main focus but there were times when it was tough.  Going through university, trying to study away from home.  Between Covid lockdowns and visiting a very sick brother there were two huge parts of my life which I had absolutely no control over. I felt helpless in many ways. My family encouraged me to focus on my degree, and looking back, it gave me a purpose when everything else was so uncertain.

The practical side of having a sick sibling also had an effect. Looking after the house, minding the dog, driving up and down the motorway to visit him in hospital or at home.  Samuel’s illness evolved all the time, he experienced complications, he was diagnosed with a condition called Hydrocephalus, a build-up of fluid on the brain which can leave permanent damage if not treated properly. He was given so many treatments we’d never heard of, there were medications and processes we had no idea about.

Having to put so much trust in medical practitioners, we were often faced with very difficult decisions and trying to make the most informed choice, often with very little notice, wasn’t easy. Samuel really wanted me to carry on with my studies as normal and moving to Sheffield was a choice I was reluctant to make. He was adamant I went and had a good time. Yet, living in a student house, I was terrified of bringing Covid home and passing it onto him so I often made the decision to stay away, to keep him safe.   It was a hugely stressful period and I struggled with crippling anxiety around this time.

The six months before Samuel died were so uncertain. He finished chemo and the scans showed that the treatment was unsuccessful.  It was unbelievably devastating to hear those words, after all he had been through. He’d endured an operation which had left him with constant hiccups, resulting in sickness and an inability to sleep. It was like torture for him and there was absolutely nothing we could do about it. Doctors were baffled and it was incredibly frustrating to see that no one could help the decline in his mental health. He had previously always been so positive about treatment but now, with the hiccups, he was depressed and exhausted. The feeling of hopelessness was often overwhelming and I constantly question whether I could have done anything to change the outcome.

I never thought we’d lose Samuel until the day he died. Despite looking back at how sick he was, I genuinely believed he was going to make a full recovery. Now, without my little brother, there are times when I feel very lonely. I find it hard to watch my friends squabble with their siblings. Samuel and I were a pair and I miss the friendship we shared. I worry about my parents and their future. My mum is still very much traumatised about the way she saw my brother deteriorate and I’m sure she will never fully recover. I worry about my own future, without the support of my brother, I feel the pressure to make him proud in the life choices I make.

Samuel’s brain tumour journey has left me sceptical about medical opinions. I’m sure that the doctors looking after Samuel were doing their absolute best with the information available to them, but the fact is they didn’t have enough research or knowledge to make decisions that could have saved his life.  Juvenile brain tumours remain incredibly under researched and most doctors are making judgements based on what little information they have. 

One of the last things I said to him was ‘show me signs’ . I don’t know what I believe about death or afterlife, but there have been signs that I am sure are Samuel coming to say hello.  I know now that one of my goals in life is to do whatever I can to raise fund into paediatric brain tumour research. If I can help just one family avoid the pain we have experienced, then I would have made my brother proud.

Aconveyancing is challenging you to join us for an afternoon of fun (and falling over) at our It’s a Knockout charity fundraising event.

Put your best team forward as we bring together partners, clients, friends and firms to raise vital funds for Samuel’s Promise, a local charity set up to support research into paediatric brain tumours.

Expect an action packed afternoon of team activities, to champion professional collaboration, all whilst raising money for the charity.

Email marketing@aconveyancing.com to book your place and may the best team win!