'My husband could still be alive if we got him the vaccine - I'm so angry'

It's been just over a year since Ellie James was left widowed after her husband Owain died of a brain tumourhe had previously defied all odds to beat.

Ellie, mum to beautiful Amelia, who was just 18-months-old when her father received his devastating diagnosis, says that without her little girl, she believes she wouldn't still be here today.

However, her daughter, along with a firm detirmination to change the law to help others, is what keeps her going in the darkest hours of grief. Owain, from Caerphilly, was a 34-year-old fit and healthy dad when doctors found a tumour after an agonising period of tests and scans. His heartbreaking story comes as another mum recieved a devastating brain tumour diagnosis after dismissing a major symptom.

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During the initial days following a brain scan, Owain and Ellie clung on to consultant's words that it was "pea-sized". But just a few days later, a specialist delivered the devastating news that Owain had a 14cm tumour, one of the largest they'd ever seen, Wales Online reports.

Following Owain's diagnosis, Ellie pursued every avenue possible, seeking additional and supplementary treatments, undergoing experimental procedures, travelling overseas, and even tying the knot with just a fortnight to organise everything, only for the growth to make a comeback.

In February 2022, he started experiencing minor seizures, but they didn't present in the way you might expect.

"He just went very weird for like a few seconds and then he'd be fine again, he did that multiple times a day," Ellie explained.

Owain was remarkably fit and healthy, and they found themselves repeatedly visiting his GP.

The pair were initially advised it could be a cardiac issue, but those investigations came back clear. Ellie recalls telling the GP about Owain's granddad, who had died of a brain tumour.

"I said, 'oh, you know, you hear those weird things about young 34-year-olds getting diagnosed with a brain tumour, could it be that?' and he said, no because he's not having any headaches'," she said.

The GP put Owain's symptoms down to anxiety, but that didn't add up for Ellie. "Owain was the least anxious person you could meet," she explained. "He was so laid back he was almost lying down and I remember saying to him, 'you must be anxious about something, tell me what it is'."

In August that year, Owain started experiencing headaches and returned to his GP, where he was given paracetamol and sent home. However, one night, his headache became so severe that he couldn't get out of bed.

Ellie took him to The Grange University Hospital and wouldn't leave until he got a brain scan.

But as the hospital's A&E department got busier, all visitors were asked to leave, leaving Owain alone when he was told a tumour had been found. "Owain was just completely in a daze," she said.

They were informed that the tumour was cancerous but the size of a pea. "We kind of really held on to that thinking 'it's the size of a pea, that's fine'."

However, they had to wait until the weekend before meeting a neurological specialist. The consultant then revealed that the tumour was one of the largest they'd seen, measuring 14cm, not pea-sized.

Owain was devastated when he received the news, while Ellie remained strong, reassuring him that everything would be OK. "He was told he would have a few weeks to live had he done nothing, so if we had left it to the GP, he probably would've died," she said.

In just a matter of days, Owain underwent emergency brain surgery where half of the tumour was successfully removed, providing a much-needed morale boost as the couple felt progress was being made.

His care was then transferred to Velindre, where he underwent chemotherapy and radiotherapy at the Cardiff hospital. However, Ellie and Owain were adamant that they didn't want a prognosis.

"That would give us the impending doom," Ellie explained. "Owain would decide when he would die. I spoke to the oncologist privately on my own and asked what would happen, was there even a tiny chance of getting rid of it? She told me it would not reduce in size, all it would do was hold it back."

When Ellie asked if there was any hope at all that it could shrink, she was told 'absolutely not'.

The couple then began exploring additional treatments beyond the standard ones offered on the NHS, a decision which they believe upset medical staff as it contradicted their advice.

Despite his diagnosis, Owain showed no symptoms. "You would never have known he was ill. It was in the right side of brain so it didn't affect mobility, you honestly wouldn't have known there's anything wrong with them. All they said was that it would stay at 7cm until it starts to then get bigger again," Ellie said.

In the midst of Owain's tumour nightmare, the couple, who had been together for a decade, got married. Just two weeks after his diagnosis, their wedding day was largely planned by others who offered to help.

They found an available venue and booked it on the spot. Ellie stumbled upon a sale dress at a bridal shop that she fell in love with and bought.

Their loved ones organised their dream day, which, thanks to a friend of a friend who also had a brain tumour, included a helicopter arrival for Owain. "It was phenomenal," Ellie revealed.

Instead of gifts, they asked for donations towards Owain's treatment, raising around £10,000 in their first fundraising effort alone.

Away from the hospital, they started doing everything possible. "Owain completely changed his diet and went on a quite strict keto diet. He was taking around 100 tablets a day, a mixture of supplements and drugs that we found off label, we had appointments the whole week," Ellie said.

"I was injecting him with mistletoe, which boosts your immune system three times a week. He was having IV drips of vitamin C and then we found this vaccine, which basically uses your tumour tissue and mixes your tumour tissue with your dendritic cells, which is part of your immune system in a petri dish.

"It kind of educates your dendritic [immune] cells to the tumour cells and educates them that they're bad, and then when re-educated, they will then be reinjected into your body so they can find them in your system and kill them basically.

"It's a really, really clever immunotherapy but you need tumour tissue for it. We thought we had a lot of tumour tissue because Owain had had 7cm removed, but we found out when going through this process that he only had 1cm of what's called fresh frozen, the other 6cm had had a chemical put on it."

The greater the amount of tissue available, the more vaccine doses can be administered, Ellie explained. For this particular treatment, patients typically receive six doses in the initial year followed by two annually thereafter.

Owain received three doses - the bare minimum they could provide. There was, and remains, no routine discussion about tissue preservation during surgery, Ellie says.

They weren't informed about the crucial importance of tumour tissue and only learnt about it through their own research. The couple were discouraged from pursuing the vaccine due to its experimental nature, she says.

"The problem is these brain tumour patients live on an average 12 to 15 months, so they don't have time to wait for the NHS to come through," she said, explaining why they took the approach of trying anything they could.

"I said to Owain 'I don't care if this vaccine gives you an extra week, I will sell my house to get you that extra week' Money means nothing when you're in that kind of situation."

The month after his initial three jabs in February 2023, Owain underwent his first scan since the operation. "The 7cm tumour that was there in September had completely gone by February, which is unheard of in brain tumours," Ellie revealed.

At that moment, determining which treatment had achieved this wasn't their priority - they were simply thrilled it had been successful.

Owain then enjoyed nine more months with a completely normal quality of life. "He could still complete a 5k run in 20 minutes and play football," his wife revealed. "You would never have known there's anything wrong with him."

He underwent six additional months of chemotherapy and continued with the experimental treatment, but in December his tumour returned, detected when a shadow appeared on his three-monthly scans.

They travelled to Germany for treatment, but it was an extremely aggressive tumour and by the time they arrived, it had expanded 6cm in eight weeks, so they recommended a Turkish surgeon who removed it.

The couple continued to travel back and forth to Germany for oncolytic viral therapy. They attempted to produce more vaccine from his tumour, but Owain's condition declined too rapidly.

By May it had grown another 6cm, so he underwent another operation, which saw 90% of it removed, but afterwards he was no longer the same, Ellie admits.

"Within six weeks had taken over the whole left side of his brain and he died very quickly," she said.

"I made a vow that I would stay out in Turkey to get a treatment plan, and then I would copy that treatment plan and have it done over here, so we stayed up there really until the very last minute that we could. We came home on Friday and he died on the Wednesday.

"It was horrendous. The last two weeks of his life were probably the worst. He went downhill really suddenly. It was like dementia, all in two weeks. One day he couldn't speak. The next day he couldn't walk. The next day he couldn't see. It was like sudden, daily. I do look back and think, actually, that's the way he would have wanted it. He wouldn't have wanted to have been stuck in a wheelchair for months.

"I'm pleased that he had an amazing quality of life because you do see a lot of brain tumour patients who don't. And we were really big on trying to reduce the his steroid use, which I think does impact your survival and most end stage brain tumour patients have hugely swollen faced. He looked phenomenal. I mean, I would say he looked better on his deathbed than he did when I've seen him with some hangovers.

"So I look back I think 'the doctors were wrong. What we did was the right thing to do. And who were they to tell us that we shouldn't be doing it?"

Ellie confesses that the reality of what they endured has only just dawned on her. She spearheaded the medical appointments. "Owain didn't want to know about the tumour, so I just took over and I was I was completely his advocate. For him, that's what he needed. He needed someone to do it for him, he couldn't cope with it."

Throughout the heartbreaking ordeal, it's their daughter who keeps her going. "I honestly believe if she wasn't here I wouldn't be either, but she is, so I have to get out of bed for her".

Ellie's attention has now turns to campaigning for new legislation, representing the club she never wished to join - those affected by brain tumours.

"What makes me really mad is just had we known that information about freezing chamber. I believe Owain could still be alive today had more of his tumour have been frozen he could have had more vaccine and be alive today," she said.

She attempted to pursue the NHS complaints procedure over concerns she had about their treatment, but has chosen to concentrate on the political path, hoping to secure legal reform in Owain's memory.

Her aspiration is for Owain's law, ensuring that during surgery patients are informed about the consequences of histology and its significance, guaranteeing truly informed consent.

"I also feel like any tissue that's taken out of your body, but obviously we're just talking about brain tissue in this circumstance, is yours, it belongs to you so therefore, you need to consent to what happens to it.

"And then the other part is the minimum amount should be used for histology, not 90% of what's there. And then the rest of it should be fresh frozen as a standard so it's preserved in the freshest way possible and you can use it then for whatever you like.

"So you could use it for treatment like we did or you could use it for research or more testing. It's the the patient to choose".

There isn't, she explains, a precedent anywhere else globally, but it's something brain tumour charities are supporting through her petition which she's eager for as many people as possible to sign.

She has championed it in the Senedd, with assistance from her local MS Hefin David.

Nevertheless, health secretary Jeremy Miles appeared to reject it. "The introduction of a statutory requirement to fresh freeze all brain tumour tissue, in the Government's view, risks unintended consequences.

"Clinical teams already use their expert judgment to balance diagnostic needs with the potential for research and novel therapies. Overriding that clinical discretion through legislation could compromise timely diagnosis or create conflict where tissue volume is limited, which is why the Government does not believe that the case is made for legislation," Mr Miles told the Senedd.

Ellie said: "What worried me about what the health secretary said was that clinicians are there to use their discretion and by having Owain's law we're going to encourage disagreement between medics and patients.

"Using the words 'clinical discretion' in health care, I think, is scary. So one patient may have it, and another won't based on which clinical person you see and what decision they make, is so wrong."

She has been left gutted after being told she would be invited to meet the health secretary, only for a formal meeting to be refused.

"We live in a democratic society, if I want to go out and do other stuff, I can. That's absolutely my prerogative to do that and I should be able to do that without anyone holding us back. That's just not the case in the NHS at all.

"The gold standard of treatment for brain tumours has been in place since the 90s. It's not a gold standard. and glioblastoma was found in 1926 and at the time, average survival was 12 months well, it's now 12 to 15 months average survival," she said, adding it is the cancer with the least funding, and is classed as a rare cancer. "But it is actually the biggest killer of adults under 40 and children," she said.