Emma’s story

Emma was a chatty, bubbly girl who loved dancing, Sheffield Wednesday, and going to school. She was diagnosed with a rare brain tumour in 2004, and over the next four years she lost her sight and her ability to walk. Despite all this, she never lost her smile. Sadly, in 2008 she passed away at Bluebell Wood at just 13 years old. Mum and dad, Jane and Steve, share her story.

Jane said, “When she was young Emma always used to get headaches, but the doctors told us that it was normal and she should just take paracetamol. One day though, when Emma was nine, she woke up with a really bad headache and kept being sick. Something seemed different, so I took her to the doctors and they referred her to Sheffield Children’s Hospital the same day.

“The doctors at the hospital took Emma for a CT scan, and while I waited they asked me all sorts of questions, like ‘can she walk?’ and ‘can she do her homework?’ I didn’t know how to answer – she was just an ordinary girl. Eventually I was called into a private room, and the Consultants told me that Emma had a very rare brain tumour. I couldn’t believe it; I thought she just had a migraine. When Steve arrived at the hospital the first thing she did was run up to him and say, ‘daddy, I’ve got a lump in my head.’”

Over the next few months Emma had lots more tests, including a biopsy to fit a shunt in, to remove excess fluid from her head, and a 12 hour operation to reduce the size of her tumour. In December 2004 she also had an emergency operation after her radiotherapy treatment caused the fluid in her shunt to thicken and block her tube. Jane said, “The doctors said she could die from this, and she was rushed to theatre, but after the operation she was wide awake, and asking for a sausage sarnie and a colouring book. During her illness she had so many long procedures – 15 in total – and could be taking up to 20 tablets a day, but she was always upbeat and didn’t seem fazed by anything.”

Jane and Steve first heard about Bluebell Wood in 2006, and the Care Team helped the family care for Emma at home, and even stayed over one night a week so they could have a full night’s sleep. The Care Team also supported Emma’s sister, Katie, by taking her bowling and doing fun craft activities with her so she had time to just be herself.

Steve said, “During the last year of her life, Emma’s condition deteriorated, and she went blind and stopped being able to walk or talk. Having the Bluebell Wood Nurses at home was invaluable; they got to know Emma so well and she could still recognise their voices when she couldn’t see. Even though she was poorly, she was still so determined. She loved school and her dancing and she still wanted to go. She used to go to performances and tap her feet to the music, and give the dancers a thumbs up after each song.”

Sadly, at the end of June, Emma’s condition got worse, and on Tuesday 24th June, she passed away at home, surrounded by her family. Jane said, “Bluebell Wood arranged for us to stay in their Forget-me-not suite, so we had more time to say goodbye. Emma had all her teddies and photos from her room around her, and her favourite yellow bedding. She loved Westlife so we played that in the room constantly. The Care Team helped us dress Emma, so she didn’t look poorly anymore. Katie could see her sister in bed, and it wasn’t such a scary thing.”

Bluebell Wood also helped with Emma’s funeral service, and the Care Team spent time with Katie helping her make sense of what had happened.

Steve added, “Watching Emma deteriorate was the worst thing in our lives, but it would have been a lot worse without Bluebell Wood. Jane now works in the Care Team, and I help the hospice by volunteering. We both try to support Bluebell Wood however we can, and over the last ten years we’ve raised over £60,000 for the hospice.”