Shortly after celebrating his fifth birthday in March 2018, Ben, from Kings Norton, was diagnosed with a glioblastoma (GBM). His diagnosis came as a shock after doting parents, Jo and Sam, noticed some unusual behaviour which developed into problems with his mobility and speech. A CT scan revealed an inoperable mass growing in his brain stem. Ben underwent gruelling radiotherapy and chemotherapy which provided a period of hope for the family. His brave battle even caught the attention of his footballing hero and the England captain Harry Kane. By May 2019, the cancer had grown aggressively and Ben died in a local hospice. He was just six years old.
In the year their son should have turned 10, Ben’s parents are sharing their story to help drive awareness and funding towards research to eventually find a cure for the disease.
Here is Ben’s story, as told by his mum, Jo…
Ben was a force, a whirl of electrical charge. He loved to move and would quite literally throw himself into everything. He loved being outdoors and would often bolt across the park before you could zip up his coat – he was in such a hurry to do everything.
He was a kind and gentle boy who was intuitively sensitive to the feelings of others; a characteristic that shone even more brightly during his treatment. He was astonishing in so many respects.
Two weeks before our world upended, in March 2018 we had been celebrating Ben’s fifth birthday. Ben was excited to have a bouncy castle for his party, and was jumping for some time before his friends arrived. The day went by in a blur and by the end of it, Ben was exhausted.
“At one point I found him under the table shielding his ears which struck me as unusual but not alarming given how overwhelming birthday parties can be.”
Ben was in reception class and as the school Spring term was nearing an end he seemed run down, and his teacher commented on how Ben seemed distracted. At home he was irritable. His speech changed resembling as if he had a cold. Linking everything together I thought he could be having hearing difficulties or perhaps these behaviours – none of which raised particular alarm – could fit the picture of a young child ready for the end of term.
At the time I was also dealing with the recent death of my grandma who I was especially close to, so my attention had been on her and my mum. I had been visiting her regularly whilst she was in hospital and remember seeing the sign for Teenage Cancer Trust and saying to Mum ‘at least we’re not facing that’.
It was as if the universe took that comment as a challenge. We had just come back from my grandma’s wake when family members noticed Ben walking with a limp, we were still in our funeral clothes when we rushed him to the GP.
“With rising panic we waited for Ben to tell the doctor the name of his teacher. He couldn’t. The words were muffled and unrecognisable.”
Even as the doctor phoned through to A&E at Birmingham Children’s Hospital to get us an emergency appointment, I tried to tell myself that this was going to be an infection, something they could write a prescription for. Nothing could have prepared me for what was to come.
Ben’s odd behaviour continued and I watched him twirling around on the spot - finally he was called for a CT scan. I wouldn’t look at the faces interpreting Ben’s scan images, I couldn’t bear to see reflected in them what my mind was beginning to guess at.
Our worst fears were realised as the scan confirmed several masses in Ben’s brain, including his brain stem. As the doctor explained the findings, I felt like I was falling through the floor, like I was still wearing the lead apron they make you wear in the scanning room. “This will be a fight” were the words used by the kind doctor who stayed well beyond her shift whilst I cried in disbelief, trying to work out how to tell my husband who was at the time unloading Ben’s overnight bag from the car.
I struggled to process what I had just been told. It was unthinkable that we could be talking about cancer, but we were. Just like that we were blasted into a world we had never imagined.The tumour was aggressive and we needed to act fast. Surgery wasn’t an option due to the diffuse nature (spread) of the cancer cells and this also ruled out proton beam therapy. He was placed on steroids to ease the pressure caused by the tumour. Further scans and a biopsy confirmed the tumour was a high-grade glioma, also known as a glioblastoma (GBM)
When Ben’s consultant used the word “dismal” whilst explaining the record of success for treatment of tumours like Ben’s, we were stunned. How was it possible that there wasn’t an effective treatment for a cancer in someone so young and otherwise healthy?
It was hard for Ben, always being so active to then spend 10 days on a hospital ward away from his family. The play centre at the hospital instantly lifted his mood. We explained that doctors needed to ‘lift up the bonnet’ to see what was going on in his head, similar to what you do to fix a car.
“I hated the fact they were having to cut into my baby’s skull but believed that it would be a scar he would grow to be proud of in years to come when this was all behind us.”
Before treatment started, we went on a family trip to the seaside. Ben was struggling to walk and was extremely tired. It was unlike any other holiday we had been on, so full of anxiety and dread. Ben was by now unable to talk, communicating only by pointing and signing.
He started oral chemotherapy and six weeks of radiotherapy which he referred to as his “big medicine”. Our kitchen transformed into a mini hospital as we had to mix the contents of his Temozolomide tablet with various puddings to try to make it easier for him. It felt awful and cruel, but we had no other choice.
Radiotherapy caused leg tremors which disturbed his sleep. Hospital life became our new normal, we would see familiar (largely adult) faces in the waiting room. We had amazing care from the team around him and became familiar with deeply imposing procedures including weekly blood counts and regular blood transfusions.
As Ben lost his hair due to treatment, we took that as a sign of things having some effect. Sam and I grew anxious about what would happen if the treatment did nothing –there was no plan, no other options.
Five weeks into treatment, the remarkable happened – Ben began talking again. His first words being “Mummy”, “Daddy” and “Nana” as well as “I want the world cup”. He had become excited by the football World Cup in 2018. England were doing really well and we enjoyed watching matches together as a family as a distraction from treatment.
“Ben became stronger, walking and running around winning the hearts of staff treating him.”
We were riding high from Ben’s successful treatment, England had come really far in the World Cup. At his last radiotherapy session, he was presented with a replica World Cup trophy. A moment captured on camera which went viral within 24 hours of posting it online. Harry Kane had mentioned Ben in a press conference and #BensWorldCup was trending. It was unbelievable. It felt like the universe was back on side.
We felt a sense of lightness – the sight of Ben dancing in the water fountains at the splash park with just a t-shirt protecting his central line will stay with me as one of the most joyous and poignant moments.
A scan in September 2018 confirmed a dramatic reduction in cancer cells and it was hoped that the remaining cells would die off with the after effects of radiotherapy and further chemotherapy. We were cautiously optimistic.
The start of a new school year gave the feeling of a fresh start. Ben continued to enjoy the buzz of football and was invited to Wembley Stadium to be a mascot for the England vs Spain match. He walked on with Harry Kane and was by his side when presented with the Golden Boot.
Sam and I watched in disbelief from the side-lines along with friends and family around the country as Harry Kane shared his big moment with Ben. If this had been a film, they would have ended it there.
Two months later, the reality of the type of tumour Ben was living with was undeniable. Ben started to display signs of fatigue and was less co-ordinated which we thought could be caused by the radiotherapy – something we were warned about. A photograph of Ben showed a crooked smile, crooked because of the weakness caused by a tumour.
As New Year’s Eve approached the scan results showed significant re-growth. Sam and I fell silently into pieces as Ben was unaware, sitting with a nurse outside the room.
“Meetings with the oncology team that were once full of hope now lacked optimism. Language changed and we were now talking about palliative treatment which would only buy us time and would not cure him.”
Despite being told all of this, we could not give up. We now pinned all our hopes on finding a clinical trial after the second round of radiotherapy was finished. There were a number of trials that Ben wasn’t eligible for based on the make-up of his tumour but he was accepted onto one which involved a weekly infusion of a drug which had been shown to be active in adults. It was hoped it would deplete arginine levels to starve cancer cells.
The frustrating thing about the clinical trial process is that there had to be regrowth before being eligible. With a tumour like glioblastoma, where it is known that in all likelihood it will return, it was hugely frustrating to have to wait until Ben became more poorly and debilitated after radiotherapy before being eligible.
Nevertheless, as soon as this trial began, we felt like we could breathe again. There was a chance. As long as we could keep him going, we would find a cure. It soon became clear that the trial was having no effect. We were getting desperate. We had passports renewed as we had started having conversations with clinics in the US.
We looked at trial after trial but at the time, so much was still under development for children.
Another trial used the reappropriation of a drug called sodium valproate. Commonly used to treat epilepsy, it had been found to have had some success in patients with brain tumours, but sadly had no effect on Ben’s at this stage.
We were running out of time and were encouraged to engage with Acorns, our local children’s hospice.
The weakness on one side of his body returned and he lost his mobility and speech once again. Still his ceaseless energy remained in full view for as long as it could; whether that was getting back on his bike with stabilisers in February 2019 or dancing into the night to “You Got the Love” at a friend’s wedding reception in April. By the end of the same month, that glorious energy had been taken by the disease.
Ben died at Acorns on 17th May 2019, less than two months after his sixth birthday.
Ben would have been 10 this March (2023).
We have watched his classmates get taller, swap their scooters for mountain bikes, go on their first school residentials and get trendy haircuts. It physically hurts that Ben is not with them, that he will always be six.
He was denied his future, a long life. We were robbed of the joy of seeing our beautiful boy grow up with his sister and meet his younger brother because of a disease that is at the moment, ahead of the science. This must change. With the pandemic we have seen what can be achieved when research is prioritised and properly funded. It is not acceptable that so little is spent on brain tumour research when it has the most devastating survival rates.
Life will never be the same since losing our son but Ben’s tireless spirit and determination inspires us to keep going, and to keep pushing for new hope for those affected by brain tumours.
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