Elsie was diagnosed with a brain tumour aged seven years old. Her mum, Lucy, shares her story.
Towards the end of 2021, Elsie started waking up feeling dizzy, shaking, and sick some mornings. There was no pattern - it was random. It would happen, and she'd be fine for weeks, then it would happen again and after an hour or so, she was fine.
We took her to the doctors, who said it was a viral bug. It happened a few more times, so we took her to A&E. They checked her over and said it must be something she was eating and to keep a diary.
We didn't believe this was true as Elsie has always been a fussy eater and was eating the same two or three meals, so if this were the case, it would have been more regular.
In March 2022, we noticed one of Elsie's eyes slightly turning in sometimes. We booked into the opticians and were given glasses to hopefully correct her eye. In July, on the way to school one morning, she seemed very disoriented, and it was like she couldn't see me. I asked her if she was okay, and she said her eye was dark - but it's fine now.
She seemed okay and was adamant she wanted to go to school, but I went home to ring the doctors. The doctor asked questions, and I mentioned her being sick numerous times over the last few months. He said her prescription probably needed changing, and I should take her to the opticians.
I picked her up from school and took her to an appointment that day. When they did the eye test, it was clear straight away that she had lost all her sight in one eye. They told me to take her straight to A&E, which I did. After waiting hours, she was seen by a doctor who examined her and said she had lost her sight.
He didn't know why and told me to take her to the eye clinic A&E the next day. We went to the eye clinic the next morning, and people were in and out, poking and getting her to try and read one thing and another, which she could still only do with one eye.
It wasn't until one lady, who seemed concerned, looked at the back of Elsie's eyes to see that her optic nerves were swollen. She sent her some pictures of her eyes, which confirmed this. She sent us straight back to A&E and said that she would speak to the doctor and get them to do a CT scan.
They told us she would have to stop in overnight so they could fit her in. A couple of hours after the scan, a doctor came and told me that they’d found a large mass on Elsie's brain.
They couldn't tell me any more, but she was going to have to be taken by ambulance to the Queens Medical Centre (QMC) in Nottingham. It was a massive shock to us all, but Elsie was amazing. We arrived at QMC at midnight on Thursday, where I was told she’d need to stay in and have surgery to remove what they could. Then, we would have to wait for the biopsy results.
Tuesday came and it was surgery day. They took her at around 7.30 am, and we didn’t see her again until around 11pm! Although she lost a lot of blood, and they didn't manage to get all of it, they did an amazing job. Elsie was up chatting and making everyone in ICU laugh.
A couple of days after her surgery, Elsie lost sight in her other eye, too. It never fazed her. She was up and out of bed, and just over a week after major brain surgery, she was home! Weeks passed and they were still doing biopsies, but nothing solid was coming back to say what the tumour actually was. All they could tell us was it was high-grade. In September, she had another scan, and it showed some regrowth, so they gave her a round of chemotherapy while a plan was made.
They decided radiotherapy was a good option. Her mask was made, and she went through six weeks of radiotherapy. Stopping away from home Monday-Friday at 'Billy's house' in Nottingham, it was like a little holiday for Elsie. She loved it - and absolutely bossed the radiotherapy. More scans and tests were done, and there seemed to be no change, so her consultant said she was to start an intense course of chemotherapy.
She started this just before Christmas 2022. We were lucky enough to manage to be at home for Christmas! Her chemo finished in August 2023. Other than a few times she had a blood transfusion and had to stop in hospital because of a reaction, she did really well and managed to spend the majority of time between cycles at home - even managing going to school for a couple of hours.
Elsie had her latest MRI in September, and it showed slight improvement from the intense chemo. They told us that she could carry on with some oral chemotherapy that will hopefully keep it stable or reduce it more - we've just got to wait and see.
Elsie was registered as severely sight impaired (blind), but she hasn’t let this stop her one bit. She takes everything in her stride. She has pretty much been going to school the last few weeks for whole days and is learning braille & touch typing and is so clever at getting around using her stick! She really is an inspiration, and I think we could all learn a lot from her.
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