Childrens Hospice Week
Childrens Hospice Week


When 17-year-old John and his mum Elisabeth travelled to the UK to visit relatives, they never anticipated the ordeal that awaited them. What began as a very large swelling on John’s calf quickly escalated into a life altering diagnosis of tissue cancer.  

Soon, John couldn’t walk, and was in serious pain. He was taken straight to the local emergency room.

After multiple hospital stays, a doctor broke the news – John had tissue cancer. And soon, he was faced with an unimaginable choice: have his leg amputated, and live; or let the cancer in his calf kill him.

“Through it all,” remembers Elisabeth, “I think I saw John cry only twice. Once was when we were admitted to the hospital for the amputation. There was a basketball court, and he wanted to get out there and play. When I told him it was time to head in for the operation, it finally hit him – that this would be his last basketball game with both legs. He just broke down.”

Now, a journey that started in Montserrat – a British island territory in the Caribbean, where John and Elisabeth had been living for 13 years after relocating from Guyana – has led the pair, against all probability, to ellenor: a hospice charity providing care and support for patients and families facing life-limiting and life-threatening illnesses throughout the Kent and Bexley communities.

Initially unable to access NHS funding due to their non UK residency status, doctors actively advocated on John and Elisabeths behalf. Consequently, in February 2023 – a mere month after touching down on what was supposed to be a relaxing, restful holiday – John began a series of urgent and intensive chemotherapy treatments.

It was during this critical period that John was referred to ellenor’s Children’s Services team.

By stepping in, ellenor – still one of the only hospices providing acute oncology care to seriously ill young people from their own homes in the community – enabled John to receive treatment from his temporary accommodation in the local area.

Under the guidance of Children’s Clinical Nurse Specialist Tina Dodd, ellenor’s dedicated nurses delivered comprehensive care, administered blood tests, and changed John’s dressings from his home. This helped avoid costly trips to hospital and long, difficult spells in waiting rooms – trips which for John, who was already facing chemotherapy’s crippling side effects, would have been impossible to face.

Part of ellenor’s ethos of holistic care – which encompasses not only the patient’s clinical needs, but their social, psychological, and spiritual ones, too – involves looking at the wider network around that patient. John’s dad, forced to remain in Montserrat to continue providing financially for his wife and son, was out of reach.

But there were a few things ellenor could do for his mum. Because, when what was supposed to be a holiday turns into a longer stay, problems arise. Beyond the battle to access NHS funding, there were other questions – where would John and Elisabeth live?  John’s step-dad was only making enough money to cover their expenses at home, and Elisabeth wasn’t working, so money – even enough to cover basic living expenses, let alone to rent somewhere suitable to stay – was tight.

So, when John and Elisabeth were made homeless and forced to move into emergency temporary accommodation – a place where there weren’t even facilities to wash their clothes – Tina sprang into action. Tina arranged to have their laundry done for them ongoing, had parcels of food delivered to their home, and even managed to facilitate free therapeutic massages for Elisabeth to help her deal with the overwhelming stress of the situation.

Not to mention a more informal, yet just as effective, form of therapy – laughter.

“Tina has been a blessing to us,” says Elisabeth. “She came in with laughter and smiles; she was a bundle of joy at a time when we needed it most. She’d tell John these jokes, and we’d all be giggling – those jokes were like therapy for me, too! Tina helped to take our minds off all the things that were going on, as well as being instrumental in finding out what other services we could tap into.

“Tina and ellenor have been a breath of fresh air where there was none; the first rains after a drought.”

John agrees. “Tina is amazing – she walks in, cracks a joke, and we all smile and have a laugh; she’s so much fun to be around.”

For Elisabeth, the concept of hospice care – particularly given her home, the island of Montserrat, has a population of only 4,000 – was unknown. As for cancer, it was something that happened to older people, or on the television: not to her 17-year-old son. So it’s fair to say the last year hasn’t been something either of them would, or could, have ever envisioned.

What it has been? A learning curve – and John himself is growing from it.

“It’s not the end of the world,” he smiles. “Everything in life is a lesson, and what doesn’t kill you is an opportunity to learn and grow. “I’m a stronger person than I was when I came into it; I’m less stubborn, and have more of a mind of my own. I see it all as a season in my life that will pass.”

Elisabeth adds, “It’s like my son says: everything that happens in life makes us stronger. Life is about what we take from those lessons; how we build our character and grow into someone better than we were before. It’s important to remain thankful and full of gratitude. To thank the Lord that my son is alive, that we have somewhere to live, and that we have people like Tina – and places like ellenor – to be there for us when no one else is.”

ellenor’s Children’s Services provides acute oncology and end-of-life care for babies, children, and young people of all ages (0 to 19 years), and is one of the only hospices to do this from the patient’s own home in the Dartford, Gravesham, and Swanley areas. We serve a population of more than 500,000 people in Kent, with over 90% of our services provided at home – but we require £7 million, every year, to make that happen.

To help us continue providing clinical nursing support for local children – as well as respite and bereavement support services for their family – make a tax-free donation today, or learn more about how we care for seriously ill children. With your help, we can continue being there for local families facing the most challenging period of their lives. And ensure that, wherever their journey started out, we can be there for them until it ends.