Just 1% of the national research spend has been allocated to this devastating disease
The diagnosis of a brain tumour is devastating, however there is hope. We have been fortunate to meet some very brave people who have survived to tell the tale and who want to share their story to give hope to others.
Here, Lyra’s dad Dan tells her story …
My partner Ellie had a perfectly normal pregnancy and Lyra was born on 12th May 2013. We settled into life in Highbridge, Somerset, as a new family. The first inkling we had that anything was wrong came in October when we noticed Lyra seemed to have lost her appetite and she developed a rash. The doctor told us it was a virus but the symptoms didn’t go away and we persisted as we weren’t happy with the diagnosis. Lyra seemed to be very tired and didn’t eat much. Then she started vomiting two or three times each day. We went to our GP four times in all and each time we were told it was a virus and that she would get over it. One morning she could hardly keep her eyes open and was still being sick although she had nothing left in her stomach. We later learned the vomiting was a side effect of the massive pressure which was building up insider her head.
Unhappy with what the doctor had been telling us and with this new development, we took her to Bridgewater Community Hospital but there were no doctors on duty. A nurse there repeated the diagnosis of a virus but we refused to accept this and took her straight away to Musgrove Park Hospital in Taunton. We saw a doctor from paediatrics who initially thought Lyra might have meningitis. They did a lumbar puncture but this proved negative so Lyra was taken for a CT scan. This revealed she had a tumour the size of a small orange growing in the back of her brain. It was later diagnosed as a low grade choroid plexus papilloma. Ellie and I were numb and in total shock. Although we didn’t believe she had a virus we never in our worst dreams thought it would be this.
Within half an hour we were in an ambulance being transferred to the Frenchay Hospital in Bristol and Lyra was taken into surgery early the following morning. The procedure lasted 11 hours and it has hard to explain how we felt during that time. However, it went well and the surgeons managed to resect the tumour.
We got Lyra home and she recovered well but a few months later we realised there was something wrong with her eyesight. It became so bad that she could only distinguish night and day. Back to hospital we went to discover that a cyst as growing on her optic nerve. The cyst was a complication of her earlier surgery which had caused a build-up of fluid.
It was very frightening to think she would have to go back into surgery but fortunately the procedure proved very straightforward. The operation took place on 5th June 2014 and, thankfully, by the time she came round and was back on the ward it was obvious her sight was coming back.
Lyra looked happy and, instead of looking through us as she has previously done, there was a discernible difference that she was actually looking at us. She reached out to touch Ellie’s eyelashes – that was a lovely moment and a nice confidence boost for us all.
We have been through a very frightening time but feel fortunate at how things have turned out. We are feeling optimistic about the future and have been told that it is very unlikely that a tumour of this type will come back. Brain tumours kill more children and adults under the age of 40 than any other cancer ... yet just 1% of the national spend on cancer research is dedicated to this devastating disease. This is unacceptable! It is why we are working with Brain Tumour Research to raise awareness and supporting Lyra’s aunt, Jessie Hawkes, in her fundraising for the charity.Dan Cole