When 13-year-old Olivia Stone from Swindon was diagnosed with a terminal brain tumour in February 2020, her family’s world shattered once again. Just two years earlier, Olivia’s dad, Jason, had died of lung cancer at the age of 40, leaving her mum, Donna, and sister, Cailey, to navigate life without him. Now, with Olivia’s cancer diagnosis, the family’s grief was compounded beyond imagination.
A sudden and devastating change
Olivia’s decline began unexpectedly during a school trip, where she soiled herself—something completely out of character. Donna feared Olivia was having a mental breakdown. When she picked her up, Olivia seemed like a different child, displaying tics and unusual behaviour. Donna took her to the doctor, who referred her to the mental health team. But due to recent travel to Italy and concerns around Covid-19, they refused to see her and advised going to A&E.
After a long wait, Olivia was admitted the next day and had a brain scan. She was shaking uncontrollably. The scan revealed a suspected tumour, and further sedation was needed to get a clearer image. The doctors then confirmed that Olivia had a rare tumour in the right side of her brain. She was blue-lighted to Oxford and underwent emergency brain surgery that evening to drain the tumour and relieve symptoms.
Genetic testing revealed Olivia carried the same gene as her father, Jason. Donna instinctively knew what the results meant before the doctors spoke. The tumour was aggressive and inoperable. Donna made the decision, with the gentle guidance and honesty of Dr Emily to bring her daughter to Helen & Douglas House for end-of-life care. It was just days before the UK entered its first national lockdown. The hospice gave the family a choice: if they stayed during lockdown, it would be for the duration. Donna, Cailey, and Donna’s twin sister Marie, her husband and their three children all moved in together with Olivia, knowing they would remain there until the end.
Finding sanctuary in the midst of a crisis
From the moment they arrived, the hospice became what Donna describes as “a cushion” and “a saviour.” Instead of a clinical environment, the family walked into warmth, calm, and compassion.
Donna, Olivia’s Mum said: “I breathed a sigh of relief when we came in. Olivia was so calm the whole time in the hospice. She didn’t look scared, frantic or in pain.”.
The hospice team cared for Olivia with expertise, but they also supported the entire family. They provided spaces for Marie’s children to continue schoolwork and for her son to carry on working remotely. They cooked meals, offered respite breaks, and most importantly ensured that Donna could simply be Olivia’s mum, not just her carer.
Living, not dying
Although Olivia was bedbound for most of her stay, the family made sure her final weeks were full of joy. They wheeled her into the garden for fresh air and daily exercise, played music, laughed together, and created special keepsakes. On Mother’s Day, Olivia painted with her family. The hospice even arranged for a personalised pair of Converse trainers in the style of Guns N’ Roses, a band Olivia and her dad loved.
In those four weeks, the family built precious memories that felt brighter than the tragedy around them. Even in her final moments on 6th April 2020, Olivia was surrounded by love. As her cousin Sam played the guitar, Olivia’s breathing slowed, and the family knew she was leaving them.
Donna said: “She looked settled and happy. We could see she was going up to her Dad.”
The gift of hospice care
For Donna, hospice care meant her daughter’s final weeks were not defined by illness, but by love and life.
Donna said: “Helen & Douglas House enabled Olivia to live during her final weeks. We could be Mum, Auntie, and Sister, not carers. I struggled at times, but each day we created happy memories. We never felt like she was dying. No one was sad. The staff helped generate this bright and positive atmosphere which helped us feel calm and protected as a family. They listened and always understood me.”
Olivia’s story is a powerful reminder of why children’s hospices like Helen & Douglas House are so important. In the darkest of times, they provide not just medical care, but sanctuary, dignity, and the chance for families to make every moment count.
