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In Hope Stories

Just 1% of the national research spend has been allocated to this devastating disease

Richard Brown

Richard Brown, from Dorking, Surrey, was excited and relieved at the prospect of seeing his daughter ring the bell in hospital to signify the end of her leukaemia treatment. However, following a shock seizure, he was diagnosed with a glioblastoma (GBM). In August 2022 Mabel celebrated beating one form of cancer, while Richard was in the same hospital receiving radiotherapy for brain cancer. After exhausting the NHS standard of care, he is currently undergoing immunotherapy treatment in Germany, and positive results show his tumour is shrinking. Richard's wife, Holly, and daughters, Evie and Mabel, are fundraising for this treatment. 

Here is Richard’s story, as told by his wife Holly Brown…

I want to say from the start that this is a story of hope and positivity. But we have had to fight to find successful treatment. We have had to find oncologists who look to pioneering new treatments. My husband, Richard, now travels to Germany for cutting-edge immunotherapy treatment, but this is extremely expensive and only possible through continual fundraising through our JustGiving campaign, Daddy’s Brain Bug.

Our story starts with our daughter, Mabel, who was diagnosed with acute lymphoblastic leukaemia (ALL) in June 2020. She was only two-and-a-half years old. We were in lockdown during the pandemic, so it was an incredibly isolating time for our child to face cancer. Thankfully, Mabel pushed through over two years of punishing treatment. She lost all her hair, but she made it; she beat cancer. My husband, Richard, lovingly supporting our beautiful little girl throughout.

“Richard slept next to her in hospital and held her hand every step of the way.”

One would think our family would be able to close this chapter on cancer. But by some horrific coincidence, in May 2022, exactly two months to the day before Mabel was due to finish her treatment, Richard had a big and unexpected seizure. He was taken to Epsom Hospital and given the devastating diagnosis of a brain tumour.

“Our world was turned upside down, once again.”

Richard was swiftly transferred to the care of an incredible neurosurgeon, who explained that he strongly suspected Richard had a glioblastoma (GBM) but needed to biopsy the tumour to confirm his diagnosis. He was very clear about the severity of the situation; it was diffuse and inoperable. If it was a GBM it could potentially be controlled for a short time, but one day it would be beyond any control.

The shock of this news was overwhelming. It wasn’t just a brain tumour; it was the worst type of brain tumour. We got on the train home, almost unable to speak to each other, and went home to our girls. We didn't know how to comprehend what had just happened, let alone how to tell our children.

“Walking through our front door to the girls, fake smile on our faces, was one of the hardest things I’ve ever done.”

The surgeon referred Richard to a neurologist to try to manage his seizures. As if it wasn’t enough to cope with news of a brain tumour, Richard was also suddenly experiencing sudden, full body and loss of consciousness seizures, and this was incredibly scary for everyone.

“I live in fear of seizures, and if Richard has one on his own without anyone around to keep him safe.”

The next step was for Richard to take a deep breath and have his tumour biopsied during an awake craniotomy. Richard’s tumour is in the part of the brain responsible for speech, so he had to be awake during the surgery. The surgeon needed Richard to speak to him continuously, to reduce the risk of him damaging any healthy areas of the brain. I am still in awe of Richard for this. He and his surgeon ended up chatting and bonding over a mutual love of Star Wars during the surgery, and Richard sent him a card of Obi-Wan Kenobi with the character’s celebrated quote ‘I will do what I must’ as a thank you. 

The biopsy confirmed our worst fears. Richard did indeed have grade 4 glioblastoma. He was never offered, nor did he ask for, a prognosis. But I knew from my own research the average survival time for glioblastoma is 12 to 18 months from diagnosis, with only 5% of patients still alive after five years. This was in such stark contrast to Mabel’s prognosis, which currently has a 90% five-year survival rate. Leukaemia is well funded, well researched, and as a result the treatment protocol is extremely effective. But the tables had turned, and now we faced cancer seemingly without a cure. We were categorically told there was nothing we could do ourselves, in terms of lifestyle changes, that would have any positive impact on the tumour. We didn’t know at the time that we would find other professionals, including oncologists, who would have a very different perspective.

“Richard was clearly told ‘go and live your best life for however long you have left’.”

However, the helplessness of this situation lasted only a short time. One of Richard's closest friends, Justin Buckthorp, stepped in with positivity and clarity. Justin trained at the Institute of Functional Medicine and has an MSc in Personalised Nutrition. He rejected the notion that a patient cannot make a difference to their cancer. This is when my mindset shifted. We started asking ourselves, why do 5% of people survive this? What makes them different? What is happening in the body of these individuals that makes them capable of becoming a long-term survivor? 

“We would accept the diagnosis, but definitely not the prognosis.”

Justin oversaw Richard taking a series of clinical tests. The outcome was a list of supplements based on Richard’s individual needs, aimed to radically improve his overall health, support his treatment, as well as arm his body with evidence-based supplements proven to fight cancer. Richard also started a medical ketogenic diet for a time, under the care of a specialist dietician.

Richard was transferred to the care of an oncologist at The Royal Marsden hospital. He struggled immensely that he didn’t get to see the end of his child’s journey with cancer, and celebrate that day, before starting his own treatment. On the same day that Mabel "Rang the Bell" at hospital, with cake and balloons and her favourite nurses, Richard had already been to radiotherapy in the same hospital.

“It took all Richard’s courage not to cry and focus on Mabel’s celebration.”

Richard showed such bravery throughout the treatment of six weeks of daily radiotherapy and chemotherapy, followed by a further six months of chemotherapy. But at the end of this treatment, in November 2022, Richard's MRI showed the tumour was still progressing. The treatment was not working, as is the case in 50% of patients, and so the hospital was stopping treatment. There was no back-up plan, nothing else on the table, and conversations changed to palliative care.

“I couldn't believe the standard treatment for glioblastoma was so completely ineffective, hasn’t changed in over two decades, and at best only extends life for a short time.”

By this time, the devastating side effects of Richard’s tumour were also clear. There were the recurring seizures, which meant he could no longer drive or have sole charge of our children. Alongside this, Richard’s speech was now greatly affected. The words were clear in his head, and still are today, but he struggles to get them out, sometimes incredibly so. It was a mind-blowingly bad place to be.

But this is where our story takes a turn because we didn’t put all our eggs in one basket. We had already embarked on an exhaustive process of consulting with a series of other oncologists for second opinions, trying to seek out someone with a new approach. Both Justin and I worked tirelessly, determined to leave no stone unturned in terms of research. I read about people who defied the statistics and became long term survivors of glioblastoma. I was determined to find out what made them different.

“Richard's motto became ‘I am not a statistic’ and this was, and still is, incredibly important for his mindset and motivation.”

A key turning point was finding Professor Dalgleish, Professor of Oncology at St George’s University Hospital. Dalgleish’s approach to fighting cancer was to think outside of the box in a very evidence-based way. He prescribed Richard a series of repurposed drugs, drugs for other medical conditions that have shown promise in studies against cancer.

But most importantly, Dalgleish also recommended Richard start cutting-edge immunotherapy treatment. Immunotherapy is the new approach to treating cancer, harnessing the power of our immune systems to identify and destroy cancer cells. It has shown to be successful in some types of cancer, and leading experts in the field believe it has promise as a new treatment. Richard was referred to Dr Nesselhut at the Group Practice for Cell Therapy in Germany for the creation of dendritic cell vaccines and started his monthly immunotherapy treatment in November 2022.

“Starting immunotherapy was an incredibly positive step for Richard to take, and for the first time, he felt as though he was taking some control of his treatment.”

Alongside the immunotherapy, Richard also started a drug called Avastin, a drug offered as palliative care by the Royal Marsden, in the hope of improving Richard’s quality of life by reducing his seizures and improving his speech. Avastin is not available on the NHS and was only available to us through our health insurance. This is the only difference we had by having health insurance, otherwise we were in the same boat as everyone else when it came to treatment options.

We knew we needed to give immunotherapy time. Some eight weeks into this new treatment, in January 2023, we got the news we had all been wishing for; Richard’s MRI scan showed that his tumour was not only stable, but shrinking. Dr Nesselhut confirmed that Richard was showing a “positive immune response” and that his treatment was working. So, after conventional treatment had failed, we had forged our own way to something that was not only stopping the tumour from growing but actually making it smaller.

“We were blown away by the news.”

Sadly, the biggest issue for Richard, and many like him, is that immunotherapy treatment for glioblastoma is not available on the NHS – or even through private health insurance. The only way we can access this pioneering new treatment is abroad - and it is extremely expensive.

It costs our family approximately £9,000 per month for Richard’s treatment. About £7,000 covers the immunotherapy vaccine and supplementary treatment, with another £1,000 on costs to travel to Germany with one other person for support, in case of seizures. Then there is another £1,000 for the repurposed drugs and supplements. To this end, we started the process of fundraising.

In December 2022, we started our fundraising through our JustGiving campaign, Daddy’s Brain Bug. We are all extremely grateful to everyone who has donated so far, from friends and family through to the countless kind people we’ve never even met. But we need more support to keep Richard’s treatment going; we simply can’t afford it ourselves. 

“I have worked relentlessly to change the outcome for Richard. But it shouldn’t be this way. With more funding and research into brain tumours, promising treatments such as immunotherapy would be available in this country today.”

In the middle of all this are our two young children, Evie and Mabel. Evie is a beautifully sensitive and empathetic child. She had already endured the emotional impact of her sister’s cancer diagnosis and treatment concurrent with the pandemic. She suffered acute anxiety and needed psychological support. She was just coming through all this, when suddenly, her daddy was having seizures, hospital stays, brain surgery and ultimately diagnosis and treatment of brain cancer. Evie often asks me "why did this happen twice in our family?", and I wish I had the perfect answer.

Thankfully, we had amazing psychological support from Maggie’s Place at the Royal Marsden, who coached me through how to talk to our girls about what was happening, and to how handle their big questions. As a parent you want to protect your child, but at the same time I can’t sugar-coat the situation and pretend everything will be okay. To make those false promises would create an erosion of trust if their daddy then deteriorated. At the same time, I want my children to enjoy their time with their daddy without worrying about him dying. This is why we take the approach of drip-feeding information, so our girls know only what they need to know at the time, and at an age-appropriate level.

“There has to be a level of honesty. I need our girls to look back and feel they understood what was happening at the time and weren’t kept in the dark.”

Mabel is still in the all-clear from her cancer and has just started school. She is such a happy and confident little girl. That said, she too suffers from our situation. We try to keep life as normal as possible for our girls, but that isn't easy, for example when their daddy’s speech deteriorated, and he couldn’t read to them anymore.

“It is heart-breaking for Richard not to be able to read to Mabel before bed. He relies on audiobooks now and timely page turning, but it’s not the same.”

Finally, there is me. I am coming to understand that years of chronic stress arising from both a child and a husband having cancer are inevitably going to take their toll. But I have strategies that help. Firstly, I swifty came to a place that I’ve come to call radical acceptance. I experienced this with Mabel’s diagnosis too. Instead of falling to pieces, I knew I needed to accept what was happening. This was what allowed me to step away from the suffering and channel all that energy into something positive; supporting my husband to recovery and giving that everything I could, as well as looking after our girls.

 “Acceptance was the only way I could move forwards and focus on changing our situation, instead of being stuck inside the ‘why?’ of it all.”

Secondly, I try to focus on today. I have a lot of fears, but I take comfort that we’ve found a treatment that seems to be working; we just have to keep going forwards.

 “On the surface I look calm, but underneath I’m treading water constantly. I’m determined to carry on; there is no other choice.”

My main goal right now is to continue to fundraise. Families like ours facing this brutal disease shouldn’t have to desperately seek life-saving treatment abroad, or be forced to fundraise to afford it. Please consider donating to our JustGiving campaign, Daddy’s Brain Bug, so we can continue Richard’s treatment and also to Brain Tumour Research, to support all those affected by brain tumours. There is hope for those who suffer brain tumours - my husband is proof of this. 

Holly Brown
March 2023

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.

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Together we will find a cure