A mum whose seven-year-old daughter died from a rare form of cancer says she will always be grateful for the care, support and positivity her family received from East Anglia’s Children’s Hospices (EACH).
Kayla Buttle was diagnosed with neuroblastoma in 2021 and died at The Nook in May 2025.
Mum Stacey has shared her story to express her gratitude – both for the care her daughter received and for her own bereavement counselling since.
When the time came, Stacey was adamant she wanted her daughter’s final moments to be at The Nook.
She didn’t want that moment to happen amid a ‘clinical, medical’ hospital environment and was also determined for it not to happen at home, which was their ‘sanctuary’ and a safe space for them to grieve, while also remembering the laughs, fun and joy they enjoyed together.
“EACH, and specifically the symptom management team, had been in our lives for about 18 months,” said Stacey, who is married to Wayne has two other children – Riley, 13, and Korey, 11.
“The team there are incredible and somehow have a way of remaining cheery and positive, despite the enormity of what’s happening around them.
“They’re never sad, sombre or morbid, and they just seemed to get what we needed.
“In the end, we spent eight days at The Nook before Kayla died.
“They cooked for us, washed our clothes and nothing was too much trouble.
“The team made sure she was as comfortable as possible, and, from my point of view, it was so helpful having people on hand to support me with her medications. In fact, they took over and did it for me.
“It was such a blessing and allowed me to focus on being a mum. It took a mental load away and was something I hadn’t truly been able to do for years.
“I could just sit there and give her a cuddle, without an overwhelming feeling of pressure or responsibility or constantly being on edge. Instead, it meant I could be present for all three of my children, not just Kayla.”
Kayla, who attended Norwich’s Magdalen Gates Primary School, was just three when she was diagnosed in May 2021.
After a normal, healthy childhood without so much as a chest infection, Stacey noticed her daughter had begun walking with a slight limp.
However, she was not in any distress, so they continued as normal, without any undue alarm or concern.
Kayla then started waking up in the night, complaining about achy legs.
“One evening, I told her dinner was on the table, and as she got up from the sofa, she screamed out loud,” said Stacey.
“I gave her some medicine, and we decided to see how it was in the morning.
“The next day she got out of bed and was inconsolable, dragging her leg behind her, and that’s when we decided to go to A&E.”
After what Stacey describes as a ‘difficult, traumatic’ experience, the family were eventually allowed home but had to return when it was noticed one of Kayla’s legs was swollen. A full day of investigations followed, including blood tests and X-rays.
“I then got a call early the following morning, asking me to bring her back in because of elevated infection levels in her blood,” said Stacey.
“We ended up returning for four days, during which time they confirmed they were considering the possibility of cancer.
“They’d found malignancy in her bone marrow but weren’t sure what it was, so said we’d need to go to Addenbrooke’s Hospital, in Cambridge.
“There they did a bone marrow biopsy, plus more blood tests, and it was confirmed Kayla had cancer. They weren’t sure what kind, initially thinking it might be leukaemia before establishing it was high-risk, stage four neuroblastoma.”
Stacey and Kayla stayed in hospital for another fortnight, while medics worked out the best course of action.
It was the start of a four-year journey that included near-continuous treatment – peaks and troughs, moments of hope and times of despair.
Starting with 18 months at Addenbrooke’s, Kayla also spent time at London’s Great Ormond Street Hospital as well as spells in Leeds, Southampton and even the Memorial Sloan Kettering Cancer Center, in New York.
“She was offered lots of different trials, so we took whatever opportunities were presented to us,” said Stacey.
“Every day was an emotional rollercoaster, filled with ups and downs.
“She responded to every treatment, but the cancer never disappeared, so there were moments of hope when she started to get better. Then it would aggressively return.
“I’m the kind of person who always tries to be positive – mainly because I have two other children looking to me for answers and guidance. I didn’t want them to think I didn’t have a plan.
“For the first year and a half, I was very rigid and regimented – mainly because I was exceptionally scared of being around too many people because of bugs and viruses. I was the one saying ‘she can’t do this’ and ‘she can’t do that’.
“Then my mindset changed, and we decided to start living life as best we could, creating memories and having fun.
“We bought her a drysuit so she could go swimming and did so many fun things together – from holidays, beach days and theme parks to trips to Center Parcs, Disneyland Paris and West Midlands Safari.
“I thought if I couldn’t save her, at least we’d have these memories no-one could take away from us. I didn’t want to have regrets and wanted to grab every opportunity.”
Shortly before Christmas 2024, Stacey was given the devastating news that no further treatment was possible – apart from a new trial called BEACON2.
It represented one last roll of the dice, and Kayla initially responded well, despite having a huge nosebleed during the first round. It was because one of the drugs she was taking overstimulated her blood vessels.
A second round followed, but it proved in vain. Stacey says she knew what was coming and expected the phone call that duly followed.
Then, in the early hours of one morning, Kayla called out to say she had been sick and needed the toilet. She said her legs felt like jelly and she needed help.
“She passed out in my arms, and when I laid her down and looked inside her nappy it was full of blood – what they call a catastrophic bleed,” said Stacey.
“She looked so pale, and I screamed downstairs for someone to call an ambulance.
“Kayla came round again and was as cool as a cucumber. She looked up at me and said ‘am I going to die?’. She’d never asked me that before, and I burst into tears.”
The Buttle family ended up at The Nook and Kayla died on 21st May 2025 – the day after Riley’s 13th birthday.
They stayed together at the hospice for another week, with Kayla’s body preserved in a special cold room.
“Having time together – rather than her being ripped away from me – made such a difference,” said Stacey.
“Family, friends and even her teachers were able to visit, which I loved.
“I didn’t need people hugging me and asking if I was OK.
“However, seeing them turn up for my daughter brought me so much love and warmth, knowing what an impact she had on people. She’ll always be the apple of my eye, but it was comforting to know how much she meant to others.
“The week after was a bit of a blur but being here allowed us to pop in and see her whenever we wanted. She looked so peaceful and beautiful.
“We had her favourite music on a loop, she had her quilt from home and she was surrounded by her favourite teddies.
“Sometimes I’d talk to her and on other occasions I’d sit in silence, alone with my thoughts.
“I’d hear the nurses speak to her, too, and sometimes they’d come and have a cup of tea with us.
“They had a job to do but always made time for us and catered to our every need. They took so much of the stress and strain off our shoulders.”
Nearly a year on, EACH continues to be a big part of Stacey’s life. She has fortnightly counselling sessions which she describes as her ‘dumping ground’ and an opportunity to share her innermost thoughts and feelings.
“The support I’ve received since has made such a difference,” she said.
“Some people don’t want to come back afterwards, but I find it comforting.
“I feel a real sense of belonging here, knowing it’s where Kayla spent her last days, but there’s also something about the atmosphere at The Nook.
“The staff are so lovely and positive, and it’s anything but a cold, clinical environment. It’s warm and relaxed.
“My counselling sessions are a bit of a dumping ground for me, in terms of conveying my emotions.
“I actually started having sessions just before Kayla died, when I realised I didn’t have a plan and started freaking out.
“I didn’t tell anyone to begin with, including my husband. It was something just for me and not for anyone else to question.
“It certainly wasn’t a secret and I’m proud of the fact I have counselling sessions, but I’ve never felt the need to broadcast it.
“A year on, it’s still so important for me to have a safe space where I can offload. It means I go back home in a much better place, which can only be good for Wayne, Riley and Korey.
“My counsellor is straight-talking, like me, which I really appreciate.
“I’m the kind of person who says it like it is, and I enjoy talking about my daughter. In fact, I love nothing more and get so much joy from it.
“I can’t think of anything better than remembering Kayla, celebrating her life and honouring the phenomenal, spirited and sassy little girl she was.”
