Stories

Lil's story

Lil's story

Lil suffered from severe headaches, loss of mobility and personality changes for months before she was diagnosed with a brain tumour.

Desperate mum Amanda finally took Lil to her local accident and emergency department in August 2013. She told staff the then three-year-old had fallen and banged her head at home, in order to secure the brain scan she was convinced Lil needed.

The scan revealed a cancerous brain tumour the size of a lemon.

Following her diagnosis, Lil, now five, had surgery to remove the tumour and then proton beam therapy in the US. She is monitored regularly to check for any signs that the tumour is regrowing but scans so far have been clear.

I knew something was seriously wrong but I never thought in a million years that Lil could have a brain tumour. Later, when I read the HeadSmart card listing the signs and symptoms of brain tumours in children, it all made so much sense. She was showing all the obvious signs of a tumour. If it had only been picked up sooner, it would have been so much better for Lil.

- Amanda, Lil's mum

Amanda first sought medical help for Lil's symptoms in April 2014.

After numerous inconclusive GP consultations and a referral for physiotherapy, Amanda and husband Aled opted to see a private consultant.

He ruled out cerebral palsy and muscular dystrophy before diagnosing Lil with hypermobility and possible dyspraxia. He suggested Amanda bring Lil back if physiotherapy did not improve her condition.

As the weeks went on, things went from bad to worse.

“Lil started to crawl instead of walking and she screamed in pain at night and first thing in the morning," Amanda recalled.

“Finally I thought, 'I'm going to take her to A&E.'

But because Lil was still on the referral list for physiotherapy, Amanda was terrified doctors would refuse to do tests.

“I knew that if they turned me away I had literally nowhere left to go. So I told them she had fallen. I was so desperate."

The junior hospital doctor who examined Lil said she appeared uninjured. However, he was worried about the way she walked and the headaches reported by Amanda.

He called in a consultant paediatrician and within five minutes arrangements were under way for the brain scan which revealed the tumour.

Amanda, from Cardiff, said: “I probably owe that junior doctor Lil's life. I don't remember his name but his face is etched in in my mind forever.

“It was a fast-growing tumour and if we had waited until Lil's next appointment, who knows what would have happened?"