'Just brilliant': how one hospice is bringing a smile to 4-year-old Isla
Having been diagnosed with Gorlin Syndrome at an early age, little Isla had undergone months of treatment before starting to live ‘normally’ again. But disaster struck just two years later when her mum, Gemma, found a hard lump on Isla’s stomach.
In a story reproduced with kind permission from ellenor, she tells us about Isla’s referral to the hospice – and the unbelievable difference it’s made to the family’s life.
‘It was a relief’: getting a diagnosis
Finally getting the correct diagnosis and treatment is key to helping families get on with their lives. That’s why, for Gemma Stanley and her partner Ashley, discovering what was wrong with her daughter Isla was in some ways ‘a relief’. Now, the family is again finding day-to-day living manageable, thanks to ellenor in Kent.
“When you know something is wrong with your child but not exactly what, it’s very frightening. It’s the stage when you feel things are spiralling out of control. Getting a diagnosis for Isla was a relief in some ways because suddenly all her symptoms made sense. Once you’ve got a diagnosis, you can start working on a treatment plan.”
Isla was born with Gorlin syndrome, which leaves her with an increased risk of developing cancer. At just three months old, she was regularly having episodes during which she stopped breathing. It was a terrifying time for her parents.
After weeks of investigations, she was rushed to the Evelina Hospital in London where she was immediately given a tracheostomy. Gemma stayed with her for the five-month treatment and recovery process:
“You’re not discharged with your child until they’re well enough to cope physically. As their parent, you need to be able to cope in practical terms with the tracheostomy,” she explains. “I needed to be able to change the various tubes and, once she was at home, we had carers during the night so that someone was always awake whenever Isla needed care.”
Two and half years later, Isla was breathing independently, and the tracheostomy tube was removed in the summer of 2018. In many ways, life seemed to have returned to normal for the family. Isla was fit and happy and thriving at mainstream nursery, while Gemma and Ashley had decided to try for another baby.
Then, in February 2020 and with Gemma happily pregnant, they noticed that Isla was clearly unwell. Gemma says it was at this point that she thought things were on the verge of unravelling all over again: “the doctors were trying Isla on antibiotics because she was lethargic, vomiting and not eating. Then, I found a hard lump in her stomach.”
A biopsy at the Royal Marsden in Surrey revealed a cancerous tumour on her kidney. After an operation to remove it, an immediate and intensive 27 weeks of chemo followed. By July 2020, the ellenor team were involved in Isla’s care.
“We were referred to ellenor via the Marsden, so that we could have help at home. I’m a local girl and it’s always been ‘our’ hospice."
Referral to ellenor
Gemma explains, "ellenor looked after my Nan when she died, so as a family we’ve always supported their Christmas fundraising activities and our friends who’ve done their Twilight Walk.”
Gemma was genuinely surprised when she found out about the range of support ellenor offers: “there’s just so much holistic support for people who are preoccupied with living than dying. We know that they offer so much fantastic support in terms of holidays for families, and group days out.”
‘Just brilliant’: hospice care at home
For Gemma and Isla, ellenor’s at-home service makes life so much easier – and less stressful:
“We have a team of nurses who come in weekly to check Isla’s bloods and change her ‘wiggly’ – the name we have for her portacath! It’s just brilliant. It’s one less hospital visit for us, and Isla is so relaxed with the team that she just watches TV while they do what they need to do.
“The nurses will also make sure I have all the equipment and medication I need. Back in the days when I was dealing with the tracheostomy, I had to order some of the supplies myself.”
'Helping us get on with our lives'
Gemma explains how the ellenor team’s presence and constant availability at the end of the phone has made life so much easier – now that they have a new addition to the family. She and Ashley are now mum and dad not just to Isla, but also to Brooke, who was born in September 2020.
Gemma adds, “we’re so proud of Isla. She’s cheeky, funny and strong. While Covid hasn’t made things any easier, you can feel isolated even under normal circumstances as a parent with a sick child. The fact that now we all feel isolated is something of a leveller.
“It’s been a very full-on time, but we’re getting on with life as a family. Isla’s very good with Brooke!”
"We’re so grateful to have a whole team of people supporting us – family, friends, medical experts – and the brilliant team at ellenor is a key part of the network that’s helping us get on with our lives.”
As of June 2023, Isla is in remission and attends routine check-ups at the Royal Marsden Hospital.
Thank you to Isla, Gemma, Ashley and ellenor for sharing their story.
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