In Our Hearts Stories
Less than 20% of those diagnosed with a brain tumour survive beyond five years
We are grateful to Freya, and her mum Kath, who worked with us in May 2021 to share her story here. Sadly, she passed away in December 2021. We remember Freya as we continue our work to raise awareness of this devastating disease and to fund research to help find a cure. She will be forever in our hearts.
Eight-year-old Freya Bevan, from Neath in Wales, was diagnosed with an aggressive brain tumour at just 20 months old. Following surgeries and chemotherapy, a huge fundraising effort then helped Freya to get specialist treatment in Oklahoma in the United States. Six years of stable scans followed but devastatingly, in October 2020, a new tumour growth was detected. The family has since returned to America, where Freya is having more privately-funded treatment, in a bid to save her life.
Freya’s mum Kath tells her story…
Freya was born on 16 August 2012. My husband John-Paul and I were thrilled to welcome a beautiful new baby into our family; his first child and a much-loved younger sister for my children, Olivia and William. For the first year of her life, there were no problems but not long after her first birthday, she started being sick in the mornings. I used to take her with me in the car to drop William at school, so at first, we put it down to car sickness. When it persisted, I took her to the doctor and we went back and forth to the surgery several times, trying to get to the bottom of what was causing her to vomit. They thought it might be her milk but changing that didn’t seem to make a difference.
“It wasn’t just the sickness. Roughly one day a month, she would be completely wiped out for the whole day.”
The doctors kept saying that nothing serious was wrong and that it was probably just a virus. The more it went on, the more I knew something wasn’t right. I felt as though I was being treated like an over-protective, neurotic mother. I googled every illness under the sun but I never googled ‘brain tumour’. With hindsight, I was so naïve. By March 2014, we’d had three stays in hospital with Freya and I was getting to the end of my tether. The following month, Freya was in the creche at my work one day, when I got a call to say she was really poorly. I picked her up and took her straight to my GP. He took one look at her and said she needed to be admitted to hospital. I later found of that he suspected she had leukaemia.
We took her to Morriston Hospital in Swansea, where we saw a paediatrician, who said they’d start from the top of her body and work their way down, to try to get to a diagnosis. Her words sent a cold shiver down my spine.
“She was taken for a CT scan and after just five minutes they came to tell us that they’d found a ‘growth’ the size of a golf ball on Freya’s brain. That’s when my world fell apart.”
My thoughts turned to all the suffering Freya had endured in her young life and the fact that because she was a baby, she couldn’t tell us how much pain she was in. Those thoughts still haunt me now.
Freya was transferred to University Hospital of Wales in Cardiff. When we met Freya’s neurosurgeon, Mr Paul Leach, he said he wanted to operate the next day. We consented to the surgery and the following day, our precious daughter went into theatre for brain surgery, to try to debulk the tumour.
Unfortunately, things didn’t go to plan. When Mr Leach went in, he quickly realised just how aggressive the tumour was. He was only able to remove a small slither, enough to carry out a biopsy. During the operation, Freya lost nearly half her body weight in blood. If it hadn’t been for the amazing theatre team running up and down the stairs to get more blood for her, we would have lost her that day.
“It was touch and go but after three days on life support, our miracle girl pulled through. But that’s when our nightmare cancer journey really began.”
The results from the biopsy showed that Freya’s tumour was a grade 4 primitive neuroectodermal (PNET) tumour. We met her oncologist, who talked us through the treatment plan. Freya was to have six rounds of high-dose chemotherapy, delivered through a Hickman line. She would also need a stem cell transplant. We knew it was going to be tough but we didn’t realise just how horrific it would turn out to be.
As well as the cancer treatment, Freya would need a second brain surgery, to try to remove more of the tumour. The date of her surgery was 11 September 2014. Ironically, the date of our wedding anniversary. Instead of celebrating, John-Paul and I found ourselves handing over our daughter to Mr Leach and praying like mad that nothing would go wrong. Leaving your toddler in theatre, helpless, while you wait desperately for it to be over, is truly heart-breaking.
“We were warned that this operation was risky. Mr Leach explained that he would painstakingly pick at the tumour, bit by bit, until he felt it was unsafe to go on.”
One false move could result in her having a stroke, being left paralysed, or worse. The fear was physically painful. I remember trembling in our room waiting for news. I couldn’t talk, eat or sleep. All I wanted was for everything to be OK and to have my baby back.
After eight excruciating hours, that felt like an eternity, we made our way to the theatre ward, desperate for news. As we walked onto the ward, we bumped into Mr Leach, who was only just coming out of the operating theatre. He explained that she was OK and in recovery. He said he had managed to pick away at the tumour for hours upon hours, but unfortunately, he was eventually forced to stop, as the remaining tumour was too close to her main artery and it was getting extremely dangerous.
We were just so relieved that she was OK and that at least some tumour had gone. We went to see Freya. Witnessing my child bandaged up and in pain was soul destroying but I just kept telling myself that it was needed, in order to save her. One side of her mouth looked droopy and she was slurring a little. I then noticed that she wouldn’t speak at all. Panic set in and doctors were called. They sent her for a scan and it was discovered that she’d had a mini stroke. The doctors said that we would have to wait and see if the stroke had caused any permanent damage. However, after a good night’s sleep, Freya woke the next morning and said: ‘I’m hungry, Mummy!’.
“She wasn’t slurring and although her mouth was still a little droopy, she was absolutely fine and was even playing in the toy room later that day.”
Freya had five rounds of chemotherapy treatment and it was brutal. She had seizures throughout and was seriously ill most of the time she was taking it, between April and December 2014. The final round of chemo, in December, was particularly harsh. She was in so much pain she could barely move. She couldn’t eat or drink as her little mouth was full of ulcers and her throat was burnt. I just wanted her to sleep the pain away and wake up when it was gone. I couldn’t bear it. I felt like my heart was physically breaking seeing her like that. Finally, and to our huge relief, Freya was well enough to be discharged on New Year’s Eve 2014.
However, our journey was far from over, as part of Freya’s tumour remained, she would need more treatment. The most targeted way of removing it, we were told, was proton beam therapy. It would also be less invasive. But is came at a huge cost – around £130,000. The NHS do pay for patients to have the treatment on a very limited basis but we were warned she was likely to be turned down. We applied anyway, desperate to give Freya the best possible chance. Unfortunately, in February 2015, the UK Clinical Advisory Board assessed her case and decided she was not a suitable candidate. We asked for their reasoning but no explanation was offered. We went to our MP and tried to get the decision reversed but ultimately, we were pushed into a corner and decided to take matters into our own hands.
We had support from the singer Katharine Jenkins, The Ospreys and Swansea City footballers. I set up a Facebook page, Freya Bevan And Her Fight, to document her journey and a GoFundMe page was created, to allow people to generously donate towards private treatment. I did huge amounts of research online and came across Dr Andrew Chang, a radiation oncologist at Procure Clinic in Oklahoma, United States of America, who we thought could help. We got on the phone to him and within a week our flights were booked and we were on our way to the US for Freya’s treatment to start straight away.
Freya coped with the proton beam therapy really well. She’d attend clinic every morning, have her treatment under general anaesthetic and after 30 minutes or so, she’d be out having something to eat and skipping around the place. The course was 11 weeks long and she absolutely smashed it! Meanwhile, the fundraising back home continued apace and our amazing community of supporters raised around £150,000, which covered Freya’s treatment, our travel, accommodation and associated costs of temporarily relocating to America.
We returned to the UK in May 2015 and began trying to rebuild a ‘normal’ family life. Freya was back into NHS system and was being scanned every few months, for monitoring. We stayed in touch with Dr Chang and sent him the results from every scan. Life wasn’t always easy for Freya; she suffered hearing loss, growth issues and problems with her eyes. But true to her amazing character, she never complained and took it all in her stride. In September 2016 she started school, aged four, and loved every minute of it. I remained anxious about Freya’s health and would go into panic mode if she was ever sick. But the doctors always said how well she was doing and as we enjoyed six years of stable scans, we started to dare to believe that her brain tumour journey was over.
“She was due to have a routine scan in August 2020 but as the COVID-19 pandemic had hit the UK, her scan was postponed until October 2020.”
To our huge dismay, that scan picked up a tiny speck of new tumour, measuring 5mm. Mr Leach said it was far too small to operate on and advised us to come back for another scan in three months’ time. I refused to wait that long, as I knew how quickly aggressive tumours could grow, so we agreed to a two-month wait instead. In the meantime, I embarked on more research. I found a reiki practitioner in Berkshire, who claimed to have had great success in treating cancer patients by using vibration bowls to build up their immune systems and strengthen their bodies. I took Freya out of school and we travelled there four times a week for treatment. I put Freya on a plant-based diet and gave her lots of vitamins and supplements. I did everything in my power to try to curb any progression of the disease.
The next scan was on 10 December and, devastatingly, it revealed the tumour had grown and was now measuring 19mm. You couldn’t miss it on the images. We sent copies to Dr Chang and he agreed with the team in Cardiff that it signified a re-lapse. It was hugely upsetting and just so hard to believe. She appeared to be so well and hadn’t displayed any new symptoms whatsoever. Once again, our world fell apart.
“On the positive side, Mr Leach was confident that the tumour would be easy to get at. He sounded positive and talked about being able to remove all of it.”
He also explained that things had moved on since her first diagnosis and that more genetic testing was available now. After the initial shock, I composed myself and thought: ‘let’s just get this done’.
Freya’s surgery was on 31 December 2020. Yet again, I found myself pacing the corridors, unable to do anything else. The operation was longer this time – around nine hours – but thankfully, she recovered well and was discharged within two days. The good news was that they thought they’d got all of it out. The bad news, from the histology report, was that it was another aggressive tumour, the same type as before. The tumour tissue was sent off for more testing at Great Ormond Street Hospital (GOSH) in London and we busied ourselves trying to organise the next steps for Freya.
“Everyone agreed that Freya needed to travel back to America to have more proton beam therapy with Dr Chang, who treated her before.”
We had some funds left over from the generous donations we’d received previously, which was enough to pay for the proton beam again. After a frustrating five weeks of emails, form-filling and COVID tests to get our visas and paperwork sorted allowing us to travel, we finally got the green light to go and arrived in the USA on 22 February 2021. Since our last trip to the US, Dr Chang had moved from Oklahoma to California and was now based at California Protons Cancer Therapy Center in San Diego, so that would be our home for the next few weeks.
During the flight to America, Freya complained that her head was hurting. John-Paul told me not to panic but my stomach was in knots. I was right to be worried. When we got to San Diego, I got a phone call from Cardiff to tell us the further genetic testing had revealed the tumour was a high-grade glioblastoma multiforme (GBM). I was devastated. The next day I frantically googled to find out more about this tumour-type and when I read the stark prognosis, it was awful. I felt broken.
Things didn’t get any easier when, the next day, Freya went into clinic for her radiotherapy mask fitting. The plan was for her to have the treatment without general anaesthetic this time. Unfortunately, she was hysterical when they attempted to do the fitting. Her legs gave way, she became sick and dizzy and it brought on her headaches. We all agreed that Freya would have to be put to sleep for the treatment but that meant an additional £500 for each general anaesthetic – a total of around £20,000 for the whole course.
“Freya was still really unwell four days into our stay in San Diego, so Dr Chang thought it would be a good idea to do an MRI scan. The results were devastating.”
Freya’s tumour had already grown and was spreading fast. We were all destroyed by this news. In just eight weeks it had grown massively. Dr Chang talked about getting her through some radiation treatment to make her well enough to be able to travel home for palliative care.
We were not ready to give up on Freya though and we begged him to try anything to save her. Dr Chang reached out to his team of experts and they decided to press ahead with 10 sessions of proton, after which he would re-scan, to see if the tumour had shrunk. At the same time, we searched in desperation for a clinical trial for Freya, as we knew that the proton alone would not be enough to stop this beast from growing.
The great news is that Freya’s proton beam therapy seems to have had a really positive impact. An MRI scan on 26 March showed that it had shrunk down to nearly nothing. Yet again, however, the good news came with the bad. The images also revealed that it had spread into her fluid and spine. The team decided to carry on with 20 sessions of full head and spine radiation. We knew this option was really invasive but felt that we had no choice. This finally finished on 12 May and we are not waiting for another MRI scan, which will happen once the swelling from the radiation goes down.
We are about to start Freya on an inhibitor drug, which targets mutations from her tumour (at a cost of £9,000 a month). Alongside this treatment, Freya has been put on intravenous vitamin C doses, administered three times a week. At this point, we have to throw everything at it. Freya is on medication to try and block the pathways that the tumour likes and spread into, a protocol mostly used in adults. Unfortunately, all these tablets come with the dreaded side effects, and she’s had a lot of sickness with them, which is heart-breaking to see. You feel like you’re poisoning your child, when all you’re trying to do is make them better. Her bloods have also come back with some worrying results; her white blood cell count is extremely low, which means her immune system is very weak and she’s more vulnerable to picking up infections. We have to be extremely cautious around her now.
“Also, a lot of her beautiful hair has fallen out. Even though we were warned it would happen, I prayed that it wouldn’t but devastatingly, it has.”
We are also embarking on a clinical trial vaccine, which is fairly new but looks very promising. By taking samples from her saliva, bloods and tumour tissue, a unique vaccine is being tailored specifically to Freya and to the genetics of her tumour. This, along with two generic vaccines she is being given, is likely to cost between £90,000 and £100,000. But we continue to hope and pray that something, maybe this, will work for her. The scary part is that Freya will be the first ever child to receive these vaccines, which fills us with deep fear but again we feel we have to give her this chance of a life.
“All of these clinical trials, additional MRIs, blood tests, ECGs and drug supplements come at a huge cost, way beyond the amount we had saved and budgeted for initially.”
So, as the medical bills stack up to the tune of tens, possibly hundreds, of thousands of pounds, we have re-launched our fundraising appeal and have once again been bowled over by the amazing support from our community. We have already raised £100,000 but realistically, we think we need at least another £100,000. As the chances of Freya relapsing again are extremely high, any funds left over will be put aside for any future, much-needed treatment. Obviously, my main concern is Freya’s health but the finances are worrying too and without the funds, we cannot continue this fight. Thankfully, Freya is mostly her happy, bubby self, and is just accepting all the prodding and poking she has to endure, as she knows she has to get rid of this vile disease once and for all. All she wants is to live a normal life like any other eight-year-old girl. She’s fought this illness since she was a toddler and now, surely, she deserves a break.
As for me, well, let’s just say I was at breaking point before but these past few weeks have taken it to a whole new level. Watching your precious child suffer day after day, getting weaker in front of your eyes, is truly torturous. Watching her be put to sleep every day, knowing she’s getting powerful radiation fried into her brain, is cruel beyond words. I sometimes feel there is no way our hearts can take much more pain but they always do. Freya’s cancer is so heterogeneous, it will always have the upper hand on us.
The simple fact is that this pain will never go away. It cuts too deep. The scars will never heal and we have to accept that our future is extremely unpredictable, so we take each day at a time and try to continue laughing, loving and just enjoying being parents to this incredible little girl. We keep on fighting for Freya because nobody deserves it more.
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 historically 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