BETHAN CARTER-HEWINS has spoken to The Pembrokeshire Herald about the her husband’s Josh’s desperate fight to conquer a very rare and aggressive cancer.

She said: “Josh is my life.  He’s my absolute everything and it’s awful to watch him suffer.  He doesn’t deserve anything bad in this world as he has so much to live for.”

Two weeks ago Josh, was told that the intense chemotherapy treatment he’d been receiving to treat his rare and aggressive Burkitt Lymphoma, had failed.

The 27-year-old, who was born in a prison in 1996 after his mother was wrongly convicted of arson, was told that his cancer had spread. As a result of its aggression, he was told that he isn’t eligible for further treatment.

“So essentially, Josh was sent home from hospital to die,” his wife, Beth, told The Pembrokeshire Herald.

“But Josh is the strongest person I know – his mind is so powerful and even when he’s physically down, he’s determined not to stop.  Our fight is far from over.”

Josh has learnt to battle emotional hardship throughout his life after his mother, Annette Hewins, was jailed following her wrongful conviction for causing the death of a mother and two children in 1995.  She was just three months pregnant with Joshua at the time of her arrest, and she gave birth to him while she was in custody.

Josh and his siblings were subsequently put into foster care and spent their childhood  in the Crymych area and Carmarthenshire.

He moved to Pembroke after meeting Beth in secondary school, and in May, 2023, the couple were married in Pembroke Castle.

But Josh began feeling unwell two years earlier when he was diagnosed with ulcerative colitis, which is a chronic inflammatory bowel disease.  He later developed chronic liver disease and in 2023, he underwent a liver transplant.

“Everything seemed to be going well but when we were on holiday in Greece earlier this summer, he began feeling unwell again,” continues Beth.

“His symptoms were very similar to that of his ulcerative colitis with stomach pain, bloating and a general fatigue so initially, this is what we believed it was.”

But further analyses showed that Josh, who is employed as a CAD technician and account manager for the traffic light company, CORE highways, was suffering from the extremely rare post transplant lymphoma – Burkitt Lymphoma.

“Josh’s initial reaction was ‘Let’s get this done’, and he’s shown the most incredible strength right from the beginning.”

His intensive chemotherapy treatment began in June of this year.

“He was initially on EPOCH, which is a slow infusion that goes in over 24 hours five times a week, but quite early on it became apparent that it wasn’t working,” explains Beth.  “So he had the choice of either sticking with it or moving onto another extremely intense chemo, called R-IVAC and R-CODOX-M.

“He chose the extreme chemo as he knew he’d be strong enough to cope, and he was.”

Josh was treated at the University Hospital of Wales, Cardiff.

“It was a horrific chemo and very toxic on the gut and the liver, which are both very sensitive areas for Josh as a result of his liver transplant and the ulcerative colitis.  But he coped incredibly well and his gut and liver functioned near perfectly all the way through.”

But two weeks ago Josh was given a scan that showed his intensive chemotherapy had failed and his cancer was showing up in more places than before.

He was also told that the only option available to treat the cancer is CAR-T cell therapy.

“But unfortunately Josh isn’t eligible because his lymphoma is driven by being immunosuppressed,” said Beth.  “He isn’t eligible for bone marrow transplants nor stem cell transplants because his disease isn’t under control and it’s too aggressive. 

“But when we received this news, we knew that our fight was far from over.

“Josh wasn’t going to accept this, so he did his own extensive research and found a drug – Glofitamab – which has been used to treat a very small number of  Burkitt’s lymphoma cases across Canada, Copenhagen, Sweden and the USA.  And all those cases have gone into remission.”

Sold under the brand name Columvi, this bispecific monoclonal antibody is used for the treatment of large B-cell lymphoma.

“But it isn’t licensed for use on Burkitt’s lymphoma, which means that to treat Josh, it has to be given unlicensed.  His consultant has reached out to the drug company to try and obtain physical data confirming its treatment of Burkitt’s and to try and build a case for the NHS to fund it.  But the company didn’t have the data because all the cases had used the drug unlicensed, through private hospitals.

“We’re currently desperately trying to reach out to the NHS and the drug company, Roche, to ask them to grant the use of the drug on compassionate grounds.  This has been done before, although it’s very rare.

“We’re also talking with private hospitals across the UK and abroad to try and get Josh the very best option.  Obviously this isn’t cheap, but how can we put a price on Josh’s life?”

The treatment is expected to cost in excess of £50,000, with the result that Beth has set up a gofundme link- ‘Joshua’s fight for life; Burkitt’s Lymphoma.

“We’ve had some incredibly difficult conversations over the last few weeks – conversations that no young couple should have to have, but that just comes with those waves of emotion that we’re dealing with,” continued Beth.

“In all honesty, I don’t know how I’m feeling at the moment. One day I;m full of hope, and then the next day it’s complete and utter sadness and this feeling of =dread creeping up behind me, that I’m not ready to face.

“But we’re both so overwhelmed and touched by all the love and support we’re getting.  And this is really helping us through.

“Despite what has happened, we’re both totally determined, and we’re not stopping until we’re heard.

“Josh is totally ready to face whatever is coming next.”

To support Josh click here.