‘Isla the Smiler’

Gemma Stanley’s first direct brush with ellenor – beyond living down the road, and seeing our vans go by daily – came when her nan was referred to us for end-of-life care.

Several years later, Gemma’s relationship with ellenor continued, when her mum, Elaine, won £2,500 playing our Grand Prize Draw in 2011.

Fast forward to 2020, and fate would bring Gemma and ellenor together again. But this time, it was in heart-wrenching circumstances. Gemma’s daughter Isla, then just four years old, was diagnosed with a cancerous tumour in her kidneys.

“It was absolutely devastating,” says Gemma. “Cancer is never something you think your child is going to get. It was terrifying.”

Isla also has Gorlin syndrome, having been diagnosed as a two-year-old. Caused by a chromosome deletion, it’s a rare disorder that causes developmental delays and skeletal abnormalities. Gorlin syndrome increases Isla’s risk of certain cancers – but not kidney cancer. So the diagnosis still came as a cruel, unexpected shock.

An intensive 27-week course of chemotherapy followed. During this time, ellenor stepped in to provide vital medical care, as well as support the Stanley family in other ways. But at first, Gemma was wary. Despite decades of familiarity with ellenor, Gemma heard the word ‘hospice’ – and panicked.

“When I heard ‘hospice’”, Gemma explains, “I immediately thought ‘end of life’ and ‘terminal’. I got scared. But then, ellenor explained that there’s a whole Children’s team – nurses dedicated to looking after young people, from the patients’ own homes in the community. When you get your head around the idea, and realise all the other services ellenor offers beyond end-of-life care, it feels completely normal.”

Every week, ellenor’s nurses visit the Stanley home to change Isla’s dressings, take blood samples, and provide line care. All to an…appreciative audience.

“Isla has gotten to know ellenor’s nurses. When they come in, she knows what’s going to happen, and lets them provide the care. She recognises them, and smiles at them. And, once they’re finished, Isla sits up and claps. The nurses always give her a sticker to say well done.

“The nurses are so sweet. If we ever end up in hospital, or Isla is poorly, they text me to ask if there’s anything they can do to help. They do the medical stuff, but they’re also there for a nice chat; to see Isla. They make a fuss of Isla’s sister, Brooke. They’re such a lovely team.”

Beyond the medical interventions, ellenor also supplied invitations – to its regular family days. Between pumpkin picking at a local patch to the entrancing stagecraft of Aladdin at the pantomime, there’s been plenty of family fun.

“ellenor is always there – as medical and mental support. Pumpkin picking is something most people do every October. But for a family going through cancer – and for a child who’s been in treatment for two years, and not been able to see anyone because of COVID-19 – it means the world.

“For ellenor to arrange an event that you know will be lower numbers, with a medical team on hand for emergencies, is so reassuring. You and your child can interact, and they don’t have to miss out on the things that every other child is doing.”

The treatment began to pay dividends. Isla went into remission. But then, in February 2022, tragedy struck. The unthinkable happened. Isla had relapsed.

Now, Isla is back under ellenor’s care, and receiving ongoing weekly visits again.

We’re back. We’re there for the Stanley family; for Isla. Offering support that’s not only medical, or mental – but musical.

Throughout her treatment, Isla – who is a non-verbal child – has received music therapy. It allows her to express herself, and communicate complex feelings, via a medium she knows.

“Music therapy kept Isla smiling all the way through her treatment,” says Gemma. “She loves music – she’s very sensory. That helped massively. It was an hour a week she could just express herself, and get rid of any anxieties and stresses.”

The Stanleys are facing one of the most trying, the most unimaginable, times in their family’s lifetime. But they have ellenor’s care and support. And something that, in their situation, is hard for us to fathom – a positive attitude.

“We always, as a family, try to look on the bright side of things. To focus on the good things that’ve come out of a bad situation. We’ve met amazing people on this journey – nurses, other parents with kids going through similar treatment – who we wouldn’t have met otherwise. Friendly, amazing people we’ll know for the rest of our lives.”

Of course, when it comes to remaining upbeat and positivity, the Stanleys have the best role model.

“Isla’s very cheeky, super bubbly, and has a wicked sense of humour,” Gemma smiles. “She’s very mischievous – but also very calm and wise for her age. I don’t know anyone like her. I think she’s amazing. She’s my best friend. And, considering everything she’s been through, she’s so happy. We call her ‘Isla the Smiler’!”

Gemma grew up down the road from ellenor’s Northfleet-based hospice. She’d seen the signs; visited our local charity shops. She’d even seen her Nan (who was treated “like a queen”, Gemma says) cared for by us in the final days of her life.

Yet she still didn’t fully understand the breadth of ellenor’s services. That we care for people of all ages, across the Kent and Bexley communities. And that we do so from within people’s homes: providing not only clinical, but emotional, social, and psychological care, too.

The Stanleys’ story is one of remarkable resilience. Yet it also highlights that none of us ever really know when we might need hospice care.

“You don’t always recognise what’s around you unless you’re in that situation, or know someone very close to you who is. Until you are, you don’t realise how much support you need, how much professional help – be it medical or respite care, or other therapies.

“So please, explore what ellenor does for everyday people in your community. I can’t imagine being without Isla. Help ellenor be there to help us.”