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.

FOLLOWING last year’s spectacular event, the Waterfront Community Runners are excited to announce the highly anticipated return of their 5K Charity Night Run on Milford Waterfront on Saturday 9 November 2024, in support of the RNLI.

This year’s run promises an unforgettable evening of fun, community spirit, and nostalgia, bringing back the best of the 80s to Milford Haven.

The evening’s festivities kick off at 6pm with an array of activities and entertainment creating an electric atmosphere from start to finish. Runners and supporters alike can look forward to live performances by the Samba DOC Band, a raffle stall with exciting prizes, and a selection of hot drinks and homemade cakes. The 80s-themed event encourages all participants to dress in neon, sparkles, or fancy dress, and get ready to run, dance, and celebrate for an important cause.

In line with the event’s night run theme, all participants are required to bring a head or chest torch to light their path along the route. Registration is open on the night from 4pm to 5:30pm with only 250 spots available on a first-come, first-served basis. To save time, runners can download the registration form in advance; however, early form submission does not guarantee entry. Due to safety concerns, dogs and pushchairs are not permitted, and children under 12 must be accompanied by an adult. 

The registration form can be downloaded here. This event is a “fun run” and will not feature official timing, allowing participants to fully enjoy the unique atmosphere. Guests are encouraged to bring cash for on-site donations to the RNLI, as well as to enjoy treats and warm drinks at the event stalls.

Volunteers from Milford Haven’s Lifeboat Station are preparing to participate in the upcoming event, proudly wearing their helmets, life jackets and high-visibility gear. Their involvement not only demonstrates their dedication to the local community but also emphasises the crucial role the RNLI plays in ensuring safety at sea, all while raising funds for the organisation’s essential operations.

PEMBROKESHIRE Association of Community Transport Organisations (PACTO) held a successful community transport operator workshop event at Letterston Memorial Hall on Friday 25 October, which was attended by the First Minister for Wales, Eluned Morgan. 

The event, titled ‘Building Tomorrow: Our Pembrokeshire Community Transport Model’, enabled PACTO to update their partners and key stakeholders on the progress the sector has made since October 2023, when they launched their three-year Pembrokeshire community transport transformation project- which has been funded by the Motability Foundation and UK Government.

The day got underway with a welcome address by the First Minister to representatives from PRTA Green Dragon, Narberth Bloomfield NDCSA, Pembrokeshire Voluntary Transport, Royal Voluntary Service, and PIVOT. Eluned outlined the importance of community transport – particularly in a rural county like Pembrokeshire – before thanking the army of dedicated volunteers and employees who work tirelessly to provide a vital service to so many people right across the county, as well as focusing on the challenges and opportunities which lie ahead.

The fantastic work that the PACTO community transport connector team do was a key focus of the event. Having completed over 215 referrals in 2024, the connector service is vital to ensuring that those in need of transport are pointed in the right direction.

John Evans, the county director for Pembrokeshire for Hywel Dda University Health Board, gave a speech which highlighted the crucial role that the PACTO transport connector team plays in ensuring that people are able to attend hospital appointments, as he shared the story of how they were instrumental in helping a member of the public who had previously been unable to find a transport solution.

Transport was provided through the Pembrokeshire Integrated Voluntary Organisation Team (PIVOT) CT service, allowing them to receive treatment for a very complex medical matter which was potentially at risk of life-threatening complication. This resolution enabled them to attend their appointment. Evans also revealed that there have been over 6,200 hospital and non-hospital trips carried out since September 2023, an average of 27 trips per operational day (Monday-Friday).

Also in attendance was Jayne Kendall, the Wales project manager for the Cranfield Trust, which provides free management support for charities. Jayne gave a presentation that outlined how PACTO and the Cranfield Trust have been working together this year and the many ways in which the organisation helps charities across the UK.

Facilitated by Sachá Petrie, the sustainable transport community development officer for Awel Aman Tawe, the workshop provided the county’s community transport operators with the opportunity to come together for further engagement, discussion and collaboration on key issues, building on the overwhelming response PACTO received from their recent face-to-face consultations and online survey, which had more than 700 responses.

The event also gave PACTO and the operators a chance to work together towards an agreed Pembrokeshire CT delivery model, which will focus on passengers’ needs as one sector which is united, robust and future-proof.

PACTO are now embarking on Year Two of the project, which will primarily consist of data analysis and volunteer recruitment to ensure the operators are able to continue offering a lifeline to those who need transport.

Speaking about the event, Wyndham Williams, PACTO’s community transport transformation project manager, said: “It was great to see everyone coming together to reflect on all of our achievements during the project’s first year.

“We have seen a 13% increase in the number of trips using community transport services in the last 12 months, with 50,855 completed since September 2023.

“It was interesting to see the figures for all the different journey purposes, from hospital to non-hospital, shopping, social, leisure, education, employment, and personal business.

“This was also the perfect opportunity to officially thank our community transport operators for the lifeline they continue to provide for people in Pembrokeshire, particularly passengers with mobility needs.

“There was brilliant attendance from our community transport operators, as we came together for the first time to discuss how we can work together effectively to continue providing a lifeline service to the people of Pembrokeshire, and we’re extremely thankful for the opportunity that the Motability Foundation’s funding has given us.”

If you would be interested in becoming a community driver, please contact Damian Golden, PACTO’s accessible vehicle coordinator, by emailing [email protected] or by calling 07767 539740.