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In Our Hearts Stories

Less than 20% of those diagnosed with a brain tumour survive beyond five years

Riley Gregersen

Riley Gregersen, from Stourbridge in the West Midlands, died from a high-grade brain tumour when he was just nine years old. Riley’s symptoms, which included a tremor in his arm, were initially put down to stress. Just before the first COVID-19 lockdown, his parents Gemma and Scott were given the devastating news that their son had a glioblastoma multiforme (GBM). Riley underwent surgery, radiotherapy and chemotherapy but eventually his treatment options ran out. He spent the final weeks of his life in a children’s hospice and died on 31 August 2021, with his adoring mom Gemma by his side. Gemma is working with Brain Tumour Research to help raise awareness of this devastating disease, which robbed her of her only child. 

Gemma tells Riley’s story…

I’m back at work and trying to stay as busy as possible but in many ways, I feel like I am in denial about what has happened. I still think Riley is going to walk through the door one day. He was a big character and such a huge part of my life. I don’t think I’ve come to terms with the fact that he’s not coming back.

Riley was my first and only child, born on 20 July 2012. I absolutely loved becoming a mom and he made it so easy. He didn’t cry and he slept through the night straightaway. I’d like to say that I had a great routine but, in all honesty, I think I was just lucky to have such a good baby.

When Riley became a toddler, his cheeky character began to come out and he became the master at one-liners. He had a playful sense of humour and loved to tell people his jokes. The two of us were inseparable. I used to say he was my ‘mini-me’; he was a real mommy’s boy and we’d do everything together. When he started school, he made friends easily and was popular with other children. He had lots of hobbies and interests, which included Pokemon, WWE and football. He was an avid Liverpool supporter, just like his dad. His favourite player was Mo Salah; he was obsessed with him. He also loved music – everything from the Spice Girls and Stormzy to the Commodores.

“Riley was a healthy and happy eight-year-old boy until Christmas 2019, when he started to feel tired and developed a shake in his right arm.”

Just before the schools broke up for the Christmas holidays, I took him to the GP. They said that his symptoms were stress-related, or possibly a trapped nerve. We were sent away and told to come back in a few weeks’ time for a blood test, if he was no better.

By January, Riley’s symptoms had worsened, so I took him for the blood test. By then, his school had also noticed problems. His tremor was causing him to struggle to write. His teachers contacted me and said they were worried about his mental health. They thought something must have been going on at home. I assured them that Riley had a happy home life and no reason to be feeling anxious or stressed. When the results from the blood tests came back, they didn’t reveal anything of concern, so Riley was referred for an ‘urgent’ MRI scan.

On 20 January, while we were still waiting for that appointment to come through, Riley suffered a seizure at his after-school club. They sent for an ambulance and when the paramedics arrived, they were concerned because his right foot had dropped and his balance was off. He was rushed in to Russells Hall Hospital in Dudley and later transferred to Birmingham Children’s Hospital. On his third day in hospital, Riley was given an MRI scan.  

We couldn’t believe it when the results showed he had a mass in his brain. We were terrified about what it meant but relieved that it was operable. He was transferred to Birmingham Children’s Hospital, where they performed a biopsy, which revealed that he had a glioblastoma multiforme (GBM).

“When they told us how serious his diagnosis was, we were absolutely devastated.”

The other bad news was that it was in his thalamus, close to his pons – in the middle of his brainstem. It meant that operating was extremely risky. However, on 28 February, they went ahead with debulking surgery and the surgeons managed to remove 40% of the tumour. Meanwhile, we turned to the internet to frantically research our options and the statistics were so shocking. GBM is the most common type of primary malignant brain tumour in adults – less common in children – and carries with it an average survival time of just 12 to 18 months. We were not prepared to accept this and immediately set about trying to find alternative ways to beat the odds.

However, things were not plain sailing. Not long after we came home at the start of February, Riley's condition deteriorated drastically, as he started showing signs of hydrocephalus – build-up of fluid on the brain. He had to be rushed back into hospital. It was so scary. He wasn’t talking at all, just staring into space. He had to go back to the Children’s Hospital to have emergency surgery to install a shunt to relieve the pressure in his head.

Riley stayed in hospital for a few weeks, during which time the country went into lockdown because of the outbreak of COVID-19. Thankfully, the pandemic didn’t delay his treatment and once he had recovered from his third operation, he began a three-week course of high-dose radiotherapy, to try to prevent the tumour from spreading. The COVID restrictions meant that only one parent was allowed in with him at a time and we weren’t able to have any other visitors, which was tough. We were in our own bubble though and completely sheltered from the chaos on the outside world.

Eventually, at the end of April, Riley was discharged. We may have been able to go home sooner, if it weren’t for the fact that we lived in a fourth-floor flat with no lift. Once we got home, we had lots of support from family and friends, who’d bring us gifts and supplies. It was hard not being able to see them though.

 

Not long after his radiotherapy finished, Riley started on a course of chemotherapy, which involved having five days of chemo then five weeks off. In the first week, he was very tired and had to go for afternoon naps but on the whole, he coped really well with minimal side effects. Meanwhile, Riley’s dad Scott and I found a clinic called CeGat in Germany, which could make targeted peptide vaccines, which we believed would give us the best chance of extending Riley’s life. The idea of the treatment was to use Riley’s own immune system to attack the tumour. It wasn’t available in the UK, even in trials, but we’d heard about some successes with it in Germany and America. The vaccine injection, which he’d need every six weeks for two years, would cost £55,000. Unable to cover the costs ourselves, we set up a GoFundMe page and we were inundated with generous donations from friends, family and even complete strangers, who wanted to help. By December 2020, we’d hit our target.

Riley continued to be scanned every three months and, scan after scan, his tumour remained stable. He was so brave throughout, never complaining and continuing to make us smile every day. He would often ask when he could go back to school to see his friends. He used to join in with remote lessons sometimes, which he loved and we lived in hope that one day he’d be back in the classroom with his mates, enjoying the childhood he’d had to put on hold. We made the difficult decision not to tell Riley about his prognosis; we didn’t want to scare him or make him sad. We just wanted him to be happy and to believe that one day he would get better. 

 “Things had been going so well when, at the end of May 2021, Riley fell one night in the bathroom.”

I found him lying on the floor but he seemed OK and I managed to get him back into bed. The next day, he was fine, so I thought nothing more of it. The following day, however, he woke up in the morning saying he couldn’t feel his legs. I called an ambulance and when the paramedics arrived and checked him over, they said it was probably just a muscle strain and they didn’t take him into hospital.

A couple of days later, Riley started having issues with his balance. I noticed that he was leaning back when he was walking. Convinced that something was wrong, I took him into A&E. They checked him over and gave him an x-ray but again, nothing was found and we were sent home. The next day he was fine, and did his hydrotherapy, which he loved, as always. Another couple of days later, however, he said he couldn’t feel his legs again. Then he said he was having problems going to the toilet, even though he was drinking a lot. I called for an ambulance again and this time, they took us into Birmingham Children’s Hospital. They did another MRI scan and when got the results, my world fell apart. The tumour had spread and four new tumours had appeared on his spine. There was very little they could do.

One of the few treatment options we had was palliative radiotherapy on the tumour at the top of his spine, which of course we agreed to but I couldn’t believe, or accept, that they were no other treatments available. I googled in desperation, trying to find something. I tried the Care Oncology Clinic on Harley Street in London, I investigated re-purposed drugs and I contacted doctors in America. Every time I thought I had potentially found an answer to my prayers, I was turned away. They said he was either too young or that his disease was too far advanced. It was completely shattering. Meanwhile, the German clinic sent Riley’s vaccines over, as he was unable to travel, but we couldn’t find anyone in the UK willing to administer the vaccine.

 “On 3 June, Riley was admitted to Acorns Children’s Hospice. They wouldn’t give me an exact prognosis at that stage, but we were advised to bring his birthday forward.”

Instead of celebrating on 20 July, we had a celebration on 15 June. The hospice was fantastic, organising a garden party for him with a visit from his favourite racing car, a McLaren.

Riley made it to his actual birthday but it was clear he was deteriorating. He was high on morphine and would sleep a lot. Somehow, though, he still had a smile on his face and managed to make us laugh with his jokes.

Towards the end of August, I noticed Riley was going really pale. He was barely waking at all and was no longer eating or drinking. On 31 August, he woke up in a panic and we were told that he was nearing the end, so all the family came in to see him. Later that day, he seemed to pick up a bit but by 6pm, he was really chesty and needed his nebuliser a lot. My dad turned up in the evening, as he had a ‘bad feeling’. I told him to take his bad feeling away but his suspicion turned out to be right. At 8.30pm, I rang the emergency buzzer and lots of people came rushing in. I said I thought that it was his time to go and it was. Riley died in my arms at 8.45pm. Even though I knew it was coming, it was an absolute shock and just so hard to comprehend.

I went home that night with my dad. Later, my mom and aunty came to be with me and the next day, we visited Riley in the cool room at the hospice. Then, he had to go to the undertaker. I didn’t know where to start with planning a burial but the funeral directors helped me with everything. We organised horse-drawn hearse and we had a balloon release. Everyone wore his favourite colour – red.

It’s nearly three months since Riley died and I’m nowhere near coming to terms with losing him. I have gone back to work as an admin assistant at a property management company in West Bromwich. My colleagues have been fantastic and being out of the house, rather than moping around the flat, really helps me. I’m on a waiting list for counselling, which I hope will help me to deal with my grief. People comment that I’m in denial about losing Riley because of the way in which I just get on with things. They’re probably right.

 “Tuesdays are particularly difficult because Riley died on a Tuesday. I just try to keep busy and take comfort in my wonderful family and friends.”

Shortly after we got Riley’s diagnosis, I set up a Facebook fundraiser to raise money for Brain Tumour Research. I was so angry when I discovered the statistics surrounding brain tumours, in particular the fact that they’re the biggest cancer killer of children, yet historically, just 1% of the national spend on cancer research has been allocated to this devastating disease. Riley always wanted to help people. After he died, so many people told me about how caring he was. I found out that he used to look after a little girl in reception class, who was being picked on. I’m sharing our story to help raise awareness, in the hope that I can help to make a difference, in Riley’s name.

 

 

Gemma Gregersen
November 2021

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.

If you have been touched by Riley’s tragic 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

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