The family of a 30-year-old battling a cancer so “horrific” that medical professionals cried while performing radiotherapy is pleading for help with more treatment.
Alex Able from Horsted, Chatham, is believed to be the only adult ever recorded in the UK to be diagnosed with the very rare and aggressive Rhabdoid tumour and is now in a race against the clock.
His symptoms began in September 2023 – just two years after marrying partner Elle – when he experienced a pain in his shoulder which he believed was a gym injury.
But over the coming months, it became so excruciating he would be up all night “sobbing” from the discomfort.
Mother-in-law Katie Dine said: “Elle was so concerned because this wasn’t like Alex.
“He’s a tough bloke – he goes to the gym, he carries lots of weight. He’s physically fit, he’s physically strong.
“He was crying in agony, which is again something he rarely does, and she felt so helpless.”
Despite visits to a physiotherapist and chiropractor, Alex’s pain only worsened, and eventually he went to Medway Maritime Hospital’s A&E department, where an initial MRI scan came back clear.
After it “ramped up again” by February 2024, his mum, Claudia, demanded another. This time, they found a mass, and he was referred to King’s College Hospital in London
He had surgery in June and most of the tumour was removed. But, just a few weeks later, the results of a biopsy confirmed he had cancer.
Rhabdoid tumours are very rare in children, and even less common in adults. There have only ever been 11 cases in Europe, and Alex is understood to be the first diagnosed in the UK.
The disease creates spider-like webs from cells, spreading to other parts of the body, making it one of the most lethal forms of cancer.
Katie said: “This is normally associated with a defective gene and starts in the liver – Alex’s was different.
“Extensive gene testing showed there was no hereditary link and no issues with his liver. He was super fit and healthy – unfairly, this was just the worst case of bad luck.
“Certainly no fault to anyone, because we were dealing with something rare, but it just felt like, and it does still feel like, there’s no one really who has the knowledge of Alex’s condition that has been part of his case.”
After being referred to the Royal Marsden and then back to Guy’s Hospital in London, a group of oncologists, neuro-spine specialists, and paediatricians formed a team to help treat him.
They decided he would endure six weeks of intense radiotherapy first.
Katie said: “He had a mesh mask that sat from his shoulders and went all the way over his head, and it’s made so it sits as close as it possibly can to your skin.
“It’s quite claustrophobic, and to make it worse, they then strapped that and you to the bed so that you’re held in place.
“The treatment for the therapy was about an hour long. Even the radiographers cried while doing the treatment for Alex, saying this is probably the most horrific thing that they have had to do to someone.
“It was pretty horrific, and the side effects of the radiotherapy were equally as awful.
“He had visible burns on his back, burns all down his throat. He was covered from his tongue down with ulcers.
“He lost so much weight. He was just disappearing in front of us.”
But following a brief break and then nine rounds of chemotherapy every three weeks, Alex began to receive positive results and, by December, his family felt they had “a Christmas miracle” and “a lot to celebrate”.
Just a month after turning 30, in April this year, he began to feel unwell again, and initially shook it off.
But on the way home from Shropshire, where the couple had been to visit a house they had hoped to move into to enjoy the countryside and aid his route to recovery, he was in so much agony Elle drove him to King’s College Hospital A&E that night.
There, they took some scans and asked him to return the following day when his team would be in. He did so with his wife and both their mums.
Katie said: “I honestly can say that I thought he was going to die on us.
“On the way up there, he was so pale – he looked like a skeleton. He was sort of floaty, disconnected, didn’t have a single bit of colour in his face.
“He was shuffling like a man who was 90 years old – he could barely keep himself up.
“We got into the hospital, and his oncology nurse, who is a part of his team, took one look at him and just looked horrified.”
It was discovered Alex had two new tumours on his lower back and lesions on his brain.
He had an immediate blood transfusion and radiotherapy on the new masses, and was put on steroids, all of which he responded positively to.
“He came out as a completely different Alex again. He was walking, he’d built up his strength, he’d put on weight.
“Again, we had gone from this massive dip down to we’re back on top, and we thought, we’ve got lots to celebrate.”
But now, Alex has taken a complete turn and hit “rock bottom”.
On July 11, he woke up to find he had lost all sensation in his legs and was paralysed from the chest down.
After carrying out chest, head and spine MRIs at Medway Maritime Hospital, he was admitted to a ward that night.
The results showed he now had seven tumours on his spine.
Katie said: “The doctor came in with the Macmillan nurse, and sat us down and went around asking us all these questions about Alex’s treatment up until now.
“Then he said, ‘Well, all that aside, Alex, I’m really sorry to tell you, but your team in London have decided to cease treatment as of today’.
“Elle and Alex just burst out crying. His mum just lost all colour. His sister was hysterical.”
It came as a shock to the family, who had been told he would have three consecutive sessions of chemo before the team would make any decisions about what was next.
Three days later, Alex’s oncology nurse called to say the decision had been made as the tumours in his spine are moving too quickly.
“They said that they felt that Alex would have a better quality of life not having the treatment.
“He said, ‘Well, I’ve got no life if I don’t have the treatment. What if I would like it? Could you support it? I’ll take whatever the risks are,’ and they said no.
“To say that we are heartbroken is an understatement – it’s every parent’s worst nightmare.
“Alex is angry, frustrated and scared.
“The kids feel cheated out of their future together, all their hopes and dreams left hanging in the balance.”
Initially, during his second round of chemotherapy, Alex had dismissed suggestions of launching a GoFundMe page, saying he was fully confident the NHS would get him through, and didn’t want any “handouts”.
Katie said: “I spoke to him on Sunday [July 13] and said, ‘Do you think we should go down the route of exploring it because in all honesty, Alex, how do we fund this?
“How do we get you to all of these other places, in such a small window of time, because we’re against the clock, we are losing precious time, so we need to act fast, and we can’t do that on our own.’
“And he said, ‘Actually, if there’s anything that can be done to help me, I will be gladly grateful for any support,’ so that’s when we decided to set it up.”
The site breaks down fundraisers into proportional chunks, but the family are looking to raise £180,000 in total for Alex to seek private treatment outside of the UK.
Currently, they are looking at Germany, where research and clinical trials are being carried out, as well as Mexico, which has had proven success with some medication there that is not available here.
They are also already in talks with a top neurologist based in Birmingham who is looking into Alex’s case to see how the inflammation in his spine can be controlled.
As of writing, more than £10,000 has been raised on the GoFundMe page.
His mum-in-law added: “Elle said that Alex was extremely emotional when she told him how well we are doing.
“She was relieved that for the first time this week, he truly looks and feels hopeful.”
