On 3 June 2013 my world was temporarily shattered. I attended Yorkhill Children’s Hospital that day with Freya, my three year old daughter, for what I thought was a routine MRI scan as she had previously been diagnosed with epilepsy. Once she was in recovery and I went to see her I was approached by a neurologist who took me into a side room and told me I was hours from losing my wee girl due to a build of fluid on the brain caused by a 5cm brain tumour.
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I was devastated as I had previously mentioned a brain tumour to two neurologists and an epilepsy nurse and had been told it was definitely epilepsy. A mother’s instinct should always be listened to. Freya was then taken to theatre to have an EVD put in to drain the fluid. We had to wait a week before surgeons could operate and on the Sunday she took a turn for the worse and I feared I was losing my daughter there and then. She was taken for an emergency CT scan which proved inconclusive, it then turned out she had an infection in her CSF (her fluid). She was then put on an IV drip and given four different types of antibiotics to help fight the infection. This didn’t hold the surgery back and Freya was operated on to have the tumour removed on Tuesday 11th June.
Freya was in theatre for eight hours and required a blood transfusion, once out of theatre she spent the night in HDU while my mum and I spent the night at Ronald McDonald House. We were told that the surgeons were satisfied that they had removed the whole tumour and our next hurdle was waiting a whole week for the results. Before we could receive the results, we were told Freya’s infection wasn’t clearing up the way they had hoped and her temperature kept spiking, she was then taken back to theatre to have her drain removed and replaced.
On Wednesday 19 June my mum, dad and I were told that Freya had a pilocytic astrocytoma grade 1 brain tumour – a benign tumour to me which we were absolutely delighted about although we were told there is a chance it could grow back. In the mean time all Freya needs is three-monthly MRI scans and physiotherapy due to being left with a weakness in both legs and having to learn to walk again.
Freya came on great and then woke up on Sat 13 July being violently sick. After taking her to A&E she was diagnosed with acute hydrocephalus and taken to theatre to have a shunt inserted. We are now back at home and Freya is recovering well.