We are grateful to Sam, and his wife Mauricee who worked with us in November 2023 to share his story here. Sadly, he passed away in February 2024. We remember Sam as we continue our work to raise awareness of this devastating disease and to fund research to help find a cure. He will be forever in our hearts.
Sam Bravo-Hibberd was diagnosed with an inoperable glioblastoma (GBM) in September 2023, two months after welcoming his only daughter into the world. The father-of-three, from Peterborough, Cambridgeshire, had been experiencing personality changes for at least a year and had suffered from headaches, taste auras and confusion for about two weeks prior. He was given just eight to 12 weeks to live and was referred to palliative care. However, after seeking a second opinion privately, he underwent an open biopsy during which around 30% of his tumour was debulked. He is now waiting to start radiotherapy whilst his family are crowdfunding in the hope of sourcing alternative treatments not yet available on the NHS.
Here is Sam’s story, as told by his wife Mauricee …
We had a normal, comfortable, albeit somewhat hectic, family life until suddenly we didn’t; I really miss that now, the blissful chaos, manic mornings prepping for work, school and nursery, and Sam and our boys playing football in the garden as I watched from the kitchen. We used to take our kids to quite a lot of after school clubs too, which we’ve had to cancel since Sam’s diagnosis. Gabriel, our two-year-old, played football with a local club and Theo, who is 13, had acting club, cadets and karate. Sam used to do most of the running around because he worked locally in recruitment whereas I have a substantial role in healthcare about an hour away and work longer hours. I’m currently on maternity leave having had our daughter, Alejandria, three months ago and am now also Sam’s full-time carer.
“Our lives now feel like a living nightmare.”
Looking back, I recognise that Sam’s brain tumour symptoms started at least a year before he was diagnosed. Something changed in him but I couldn’t pinpoint exactly what it was at the time. We had a very happy marriage but suddenly that changed and I didn’t understand why. I had a difficult pregnancy and thought maybe it was my hormones. It was like living with Jekyll and Hyde. Sam would tell me he loved me and then the very next day he’d do something that showed me otherwise. Or else he’d seem to forget everything we spoke about the day before or have a completely different understanding of the sequences of events in our daily lives. He had a general disinterest in things that were important to me, and to us normally. He also struggled to hold down a job and even joked about changes in his accent and laughter which, in hindsight, were all symptoms of the tumour silently growing in his head.
“Things got so bad that, in March 2023, whilst pregnant, I filed for divorce.”
Fortunately, Sam and I were able to salvage our marriage after visiting my family in the US, and with the support of them and our friends. After that we were able to start focusing more on the baby. In July, I gave birth to Alejandria. I had a long recovery due to a few complications which meant numerous trips to the hospital but Sam was there to support me throughout and did most of the driving without any issues. We were just enjoying the baby snuggles when, two weeks after giving birth, Sam’s physical symptoms started.
“At first he got headaches lasting just a few minutes, but then these were accompanied by a metallic taste, which we now know to be seizures.”
On 20 August, I had planned a barbecue for a friend who was coming to visit Alejandria but, a few minutes before she was due to arrive, I found Sam on the floor. He was with Alejandria and said he’d had to sit down after changing her nappy because he felt faint and had a headache. Again, he refused to go to A&E but I’d had enough, so the next day I took him to the GP. Sam was told he was suffering from migraines, a result of sleep deprivation from having a newborn, and was prescribed migraine tablets. I wasn’t happy with that as I knew something wasn’t right and asked for a MRI scan. I chased this when I went back to the surgery for my postnatal review. They were more worried about the possibility of me having postnatal depression but I said if they were concerned about my mental health they should refer Sam for an MRI scan.
“They did make the referral but it was booked for four weeks later.”
It was during this time, the school summer holidays, that Theo went to stay with my sister for a couple of weeks. She offered to take him and Gabriel to give me a bit of relief after giving birth. Theo started complaining of having a stiff neck but he put it down to the bed at my sister’s being softer than he was used to. Eventually, when he returned home and symptoms didn’t improve, I phoned a 24-hour GP who said it sounded like he had a muscular problem and referred him to a physiotherapist. During that appointment I noticed Theo’s left jaw becoming swollen and decided to take him to the dentist, but we ended up at A&E after I noticed a lump at the back of his ear while sitting next to him in the dentist waiting area.
I don’t know what came over me but, when I got to the hospital, I signed Sam in as well as Theo. We were split between the paediatric waiting area and the adult one. After three and a half hours, Theo was seen and I was told they were going to admit him because his inflammatory markers were so high. He was eventually diagnosed with blood clots in his neck and a deep skull base infection which required him to spend a month in hospital, with treatment continuing at home for at least another month. Sam, however, told me he was still waiting to be seen but he couldn’t tell me exactly where he was in the hospital, so I rang my sister to ask for her help with the kids and went to find him.
“I didn’t realise at that point that he was lost.”
Sam was really confused but, if you spoke to him, you wouldn’t have known it. He was even able to make the volunteers who found him believe he was fine, which was frustrating. He had the nappy bag and Alejandria was with me, crying hysterically because she needed changing. Eventually, after a nurse helped me find him, Sam did get seen by a doctor about six and half hours later. His physical assessment and bloodwork came back normal, and they were just going to send him home. I was distraught and couldn’t stop crying. I begged the doctor for a CT scan, and pleaded with the nurse who found Sam to speak to the doctor and get him to believe there was something wrong with him. Sam was eventually sent for the scan.
“A few minutes later we were asked to move into a private room where the first line out of the doctor’s mouth was ‘I’m sorry I didn’t believe you at first but we listened to you and we sent him for a scan.’”
Despite my medical background, I was in denial as I waited for Sam to have an MRI. I knew something was off but I was hoping I was wrong and it really was just my hormones. I was leaning more towards him having early onset dementia because I knew there was a history of it in his family. Sadly, the truth was much worse than I’d ever expected. We were eventually told that Sam had a very large brain tumour. I felt some sort of relief at finally knowing what was wrong, and that I wasn’t going crazy, but it wasn’t the answer I had wanted. I was distraught and even Sam couldn’t comfort me. Even after the doctor had spoken to us about his scan, Sam didn’t comprehend he was talking about him. He thought we were at the hospital because I was poorly again.
Sam was admitted that night in our local hospital. He was on the adult surgical ward, whilst Theo was admitted on the paediatric ward. Sam was referred to our closest brain tumour centre, but he had to wait a week for the next neurooncology multidisciplinary team (MDT) meeting.
“The wait was torture; Sam was having seizures in front of me and no one believed that’s what they were because his whole body wasn’t shaking.”
I was still breastfeeding, so I lived in the hospital with Alejandria in a cot while Sam and Theo were admitted and Gabriel went to live at my sister’s. On 22 September, we went for our first appointment with Sam’s neurosurgeon only to be told there was nothing that could be done. I had prepared myself for a really long journey of surgery, radiotherapy and chemotherapy but the neurosurgeon told us Sam’s tumour, a glioblastoma (GBM), was inoperable and it was unlikely an oncologist would take his case on because of how aggressive his cancer was and how poor his baseline function was. This ruled out radiotherapy and chemo.
“I wasn’t prepared to be told my husband, my best friend and the father of my children, had just eight to 12 weeks to live and was being referred for palliative care.”
That weekend I found myself on a brain tumour support group on Facebook. I wanted to talk to someone but I couldn’t do it in person because I didn’t want to cry anymore. I needed to keep myself together for Sam and our children, but somehow being online talking to strangers made that easier. I posted about what had happened and lots of people replied telling me I needed to seek a second opinion, which is what I spent all Monday doing. Our first appointment, which we self-funded, was at a private hospital in London. As Sam was young and fit, they advised him to at least have a biopsy. This would enable us to know exactly what type of tumour we were dealing with and, if nothing else, could give us some sort of closure. I spoke to Sam about the risks, including the possibility of losing him on the table, but he was adamant he wanted to go ahead with the surgery.
I passed this recommendation back to our local neurosurgeon. I told him we would proceed with it privately if we had to but, with three children, Sam out of work and me on maternity leave, it would hit us hard financially and logistically. Thankfully, he showed compassion and booked us an appointment the following week to discuss it. The team talked about the risk of Sam bleeding during a needle biopsy and I asked about the possibility of him having an open biopsy instead, which might also allow them to remove some of his tumour. After much discussion, Sam was booked in for surgery three days later. His surgeons were able to take out about 30-40% of the tumour.
“This has undoubtedly bought Sam more time, but, as happy as I am, I’m sad for others who perhaps don’t have the medical background I do or the money to pay for a private consultation.”
We’ve since met with an oncologist consultant to discuss Sam’s options post-surgery. As well as confirming his tumour type, his biopsy results revealed it is unmethylated. This makes it less likely to respond to chemo and, with his liver function deranged from surgery and medications, radiotherapy is the only treatment they will consider at the moment. Sadly, Sam’s repeat MRI scan showed his tumour has progressed further and grown into where it was debulked from.
“Meanwhile, I’ve been researching alternative treatments like immunotherapy and tumour treating fields (TTF).”
We had set up a meeting to discuss Sam’s participation in the TRIDENT trial, which is evaluating TTF using the Optune system with chemo and radiotherapy, but the result of his most recent scan and blood test mean he’s no longer eligible for that trial. On average, Optune costs £17,500 to £20,000 a month whilst immunotherapies can cost £2,500 per infusion in the UK. Bespoke treatments offered by CeGat, a genetic research clinic in Germany, cost around £100,000 and DCVax-L, a type of immunotherapy known as a dendritic cell vaccine, costs patients around £250,000. Sam also signed up for the Minderoo Precision Brain Tumour Programme (MPBTP) and is awaiting the results of whole genome sequencing. This will unlikely change his prognosis but a more precise diagnosis will be helpful, not only for closure, but to hopefully shed light on possible heritable changes which will be valuable for our children as well as future brain cancer patients.
“My sister knows I will do everything for Sam but she is worried I will end up a widow, a single mum to three kids and in a financial crisis when the inevitable happens.”
I’m in touch with the wife of a GBM survivor who was able to have Optune, immunotherapy and CeGat treatment because of money raised through crowdfunding. I didn’t want to go down the route of asking other people for money but, after she suggested it, my sister persuaded me to swallow my pride for the sake of my children. People have already been very generous and we are very grateful, but we are still a long way off where we need to be in order to pursue treatments privately without compromising our children’s future and financial stability. I’m currently selling our car and a few more significant possessions and investments to raise money for Sam’s treatments, but anyone wishing to help us can donate at https://gofund.me/f85273b5.
Above everything else, I’m hoping that sharing Sam’s story far and wide will help raise awareness of brain tumours, which, despite being so common, don’t get enough attention publicly or medically. When the inevitable happens and Sam’s no longer with us, I want him to be talked about in a way that puts focus on brain tumour research and gives his life more purpose.
“I don’t want another family to have to endure the heartbreak we’re going through.”
Mauricee Bravo-Hibberd
November 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 since records began in 2002.
Brain Tumour Research is determined to change this.
If you have been touched by Sam’s 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
Together we will find a cure