Emily's Story

"It started a couple of days before Christmas 2019. Emily was complaining of lower back pain which gradually got worse over the next couple of days. I took Emily to our GP who examined her and noticed that one of her legs was weaker than the other. The GP rang the local hospital who asked us to go in that evening. After an examination they put it down to back strain and sent us home with pain killers. A few days later Emily was unable to walk properly and so we took her back to the hospital and after having an MRI scan were told that Emily had a tumour in her spinal cord and straight away we were sent to the RMCH. It was New Years Eve. Even though Emily was in a lot of pain she was so very brave. In the most horrible of situations Emily was able to enjoy the fireworks and new year celebrations that were going on outside of the hospital window. After an 8 hour operation to remove the tumour in her spine and a couple of days of agonising wait we were told that Emily had a Diffuse Midline Glioma WHO grade IV and was to have radiotherapy over 6 weeks and a course of temozolomide to control the tumour for as long as possible. Emily was unable to walk after the operation but after nine weeks of intense physio at the hospital she was able to walk and come home. We enquired about clinical trials but there was nothing available at the time. Emily spent 4 happy months at home with her family until the beginning of July when she started to feel unwell again and became very sick. After another MRI scan we were told that the cancer had spread and that there was nothing that they could do. We brought Emily home from hospital and then 3 weeks later she passed away peacefully at the age of 13, 7 months after her diagnosis. The pain we feel every day as a family is horrendous. Emily was such a beautiful, bright caring girl so full of love and fun. Our lives will never be the same but we are so lucky to have had the honour of having Emily in our lives whilst we did"