Nicole was a focused, driven, and highly organised teenager with dreams of becoming an astrophysicist. But at just 14 years old, her life took a devastating turn when she was diagnosed with Diffuse Midline Glioma – a rare and aggressive form of brain and spinal tumour. Her prognosis was just 9 to 12 months.
Bethan, Nicole’s Mum said: “There was nothing they could do. It just wasn’t curable. They couldn’t take it out. It was, what it was. And we had to accept that. Before the diagnosis, she was so forward thinking that all she wanted was to be a astrophysicist, and she knew how she had to do it. But when that was taken away from her, she felt empty. There was nothing left.”
Finding Helen & Douglas House
Soon after Nicole’s diagnosis, Bethan met Dr Emily Harrop, Medical Director at Helen & Douglas House, who introduced the family to the hospice. Nicole initially visited for symptom management, but her stays soon became longer and more frequent. She thrived at the hospice, where staff treated her with respect and spoke to her as an equal. She formed close bonds with the team, especially Harry, one of our physiotherapists who helped her regain confidence and mobility.
The power of Physiotherapy
Harry played a vital role in Nicole’s journey.
Harry said: “When I first met Nicole, she was in significant pain, affecting her ability to do simple tasks such as getting out of bed. I spent lots of time with Nicole both at Helen & Douglas House, and at home, working with her and her family focused on specific goals important to her. Her primary goal was returning to school.”
Together, they worked on a plan to help Nicole reintegrate into school. Harry even collaborated with her teachers and peers to ensure they understood her condition and could support her. Nicole returned to school in May 2023 and enjoyed a summer filled with moments her family never thought possible.
Harry said: “A standout moment of mine was watching her cross the finish line at the Bubble Rush event in September 2023 and handing her a medal. Knowing that she got to do the things she enjoyed most before she died allowed me to reflect on the importance of my input.”
Bethan added: “Harry motivated Nicole to become more mobile at a time when she was scared to leave the safety of her hospital bed. Nicole had become distrusting of the medical world. Harry successfully broke Nicole’s mindset and she lived a much more positive life.”
End of life care
In late 2023, Nicole suffered a brain bleed, which caused severe symptoms and intense pain. The hospital environment was no longer suitable, and a nurse advised Bethan to bring Nicole to the hospice for end of life care. The family moved into one of the hospice’s family flats in early December.
Bethan said: “When we arrived, she was really sick, and we didn’t know what we were going to do for Christmas. And in fact, she wasn’t expected to survive until Christmas Day.”
Despite her condition, the hospice team made sure Nicole experienced as much joy as possible. She was baptised, celebrated with school friends, and received her Gold Diploma – a recognition of five years of hard work. She also surprised her family with personalised audio gifts, recorded with help from the play team.
Thoughtful touches
Nicole adored ducks, so Nurse Rhian decorated her room with laminated duck pictures on Christmas Eve. On Christmas Day, chef Carrisa prepared a festive lunch, and Nicole was able to join her family at the table. It couldn’t have been more different to the Christmas before, which Nicole spent in hospital, with a cheese sandwich perched on the edge of Nicole’s bed.
The hospice also hosted a Boxing Day party in Nicole’s honour, continuing a cherished family tradition.
Bethan said: “The nurses said just use the hospice like it’s your home. You would not think that looking at us all laughing and joking and enjoying ourselves, that Nicole was so sick, but that’s what Helen & Douglas House makes possible – normality in the most ridiculous circumstances.”
Nicole’s final moments
In the early hours of December 27th, Nicole woke and joked to her mum “I’ve got a killer headache!” Bethan said it was typical of Nicole to have that joke ready. A nurse quickly administered pain relieving medication.
“We were all there, in a room filled with ducks and love and joy. It was beautiful – perfectly beautiful. No pain, just love and calm.”
The Little Room
After Nicole died she was moved to the Little Room. Her book and glasses were left just as she had last used them.
Bethan said: “It’s like being at home with all your aunties around you to take care of your child. Helen & Douglas House was both life changing and death changing for Nicole. They are the fairy godmother taking care of everyday chores. Giving us quality time with Nicole. It’s like being in a bubble of love.”
Nicole’s legacy
Despite being private about her condition, Nicole chose to share her story towards the end of her life in a final effort to fundraise for Helen & Douglas House. To date, the work she started has raised over £25,000 through ‘Nicole’s Ninjas.’ An incredible achievement. Shortly before the end of her life she organised gift bags for over 100 members of staff, to show her true appreciation. A truly inspirational young woman. It’s no surprise her family are so proud of her.