Freya's Family Need Your Help!
Eight-year-old from Neath Port Talbot is facing the fight of her life, as her aggressive brain cancer has returned after six years in remission.
Now, the family of Freya Bevan is desperately appealing for help to pay for their precious daughter's cancer treatment, which they say is their only hope of giving her a chance of survival.
Freya, a pupil at Bryncoch Church in Wales Primary School, was first diagnosed with a primitive neuroectodermal (PNET) in May 2014, when she was 22 months old. As a tiny tot she underwent two major brain surgeries, chemotherapy, and a stem cell transplant. In February 2015, she travelled with her family to Oklahoma in the US, for specialist proton beam therapy treatment, which she'd been turned down for on the NHS.
Freya's mum Kath Bevan, 48, said: "We returned to the UK in May 2015 and began trying to rebuild a 'normal' family life. 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. 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."
Devastatingly, a routine scan in October 2020, revealed a new tumour growth in Freya's brain. Doctors re-scanned her two months later and as the growth had nearly quadrupled in size, they made the decision to operate again.
Freya Bevan Appeal
Kath, who is also mum to William, 16 and Olivia, 22, said: "We were utterly heartbroken to receive the news of Freya's tumour reoccurrence. The pain we felt, after praying for so long that it wouldn't happen, was incomprehensible."
On 31 December 2020, Freya underwent a nine-hour craniotomy to remove the new growth. Afterwards, it was agreed that she would need to travel back to America to have more proton beam therapy with Dr Andrew Chang, who had treated her before.
Kath said: "We had enough money saved to pay for the proton beam therapy again, in part thanks to the amazing fundraising our community of supporters did for us the first time around.
"Since our last trip to the US, Dr Chang had moved from Oklahoma to California and was now based in San Diego, so that would be our home for the next few weeks."
During the flight to the US, Freya complained of headaches, which rang alarm bells for Kath.
She said: "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, the results from further genetic testing in the UK had arrived and Dr Chang told us 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."
Shortly afterwards, due to Freya's persisting headaches, Dr Chang carried out an MRI scan, which revealed more, devastating results.
Kath said: "Freya's tumour had already grown and was spreading fast. We were destroyed by this news. 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 refused to accept this. She'd fought since she was 20 months and we were not ready to give up on her. We told them to help us search for a clinical trial, as Freya was not going anywhere!"
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.
Kath said: "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 now waiting for another MRI scan, which will happen once the swelling from the radiation goes down."
Meanwhile, Freya's parents continue to 'throw everything at it' in a bid to try to save their daughter. Freya is about to start on an inhibitor drug, which targets mutations from her tumour (at a cost of £9,000 a month) and she is having intravenous vitamin c administered three times a week. She's also taking off-label medication to try and block the pathways that the tumour likes to spread into, a protocol mostly used in adults.
Kath added: "We are also embarking on a clinical 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. Freya will be the youngest 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."
The unexpected additional clinical trials, MRI scans, inhibitor drugs, ECG tests, PICC line insertion, blood tests, vaccines and drug supplements come at a huge cost, way beyond the amount the Bevans had saved and budgeted for initially.
Kath said: "The medical bills are stacking up to the tune of tens - or possibly hundreds - of thousands of pounds, so 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, if we are lucky enough to any funds left over, they will be put aside for any future, much-needed treatment In any case, she needs to stay on the costly inhibitor drug and Care Oncology Clinic (COC) protocol for years to come."
As they continue in desperation to privately fund Freya's make or break treatment, Kath and John-Paul are urging people to follow their daughter's journey on their Facebook page, Freya Bevan And Her Fight, and to consider donating via her GoFundMe page.
Kath said: "It pains us to have to rely on the support and generosity of others, in order to give Freya the best shot at life. We've searched the world for the best treatment options for our darling girl and we will continue to go to the ends of the earth to try to rid her of this vile disease.
"Watching your precious child suffer day after day, getting weaker in front of your eyes, is truly torturous. Watching her being put to sleep, 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. We have to accept that our future is 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."
Hugh Adams, head of stakeholder relations at Brain Tumour Research said: "We were so very sorry to learn about the latest developments in Freya's condition and wish her all the very best for her continued treatment. She is an extremely brave little girl and our thoughts are with her and her family, as they continue to fight this beastly disease.
"It is absolutely appalling that Freya's parents find themselves in a situation where they have to travel thousands of miles to access expensive, private treatment, which is pushing them to their financial limits. Their family has been ripped apart and they deserve so much better.
"Funding for research into brain tumours needs to be increased to £35 million a year in order to prevent more families from being plunged into this nightmare. We need to improve options and outcomes for patients like Freya. We owe it to her, to her loved ones and to everyone for whom childhood brain cancer becomes a reality."
Brain Tumour Research funds sustainable research at dedicated centres in the UK. It also campaigns for the Government and the larger cancer charities to invest more in research into brain tumours in order to speed up new treatments for patients and, ultimately, to find a cure. The charity is calling for a national annual spend of £35 million in order to improve survival rates and patient outcomes in line with other cancers such as breast cancer and leukaemia and is also campaigning for greater repurposing of drugs.