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At just 15 years old Ella's life completely changed when she was diagnosed with both a dysembryoplastic neuroepithelial (DNET) brain tumour and Chiari Malformation.

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When I first started showing symptoms, I was about 9 years old, this would have been. I woke up one day and I couldn’t use my legs properly. I was a very dramatic kid who used to fake being sick a lot, so mum was a bit skeptical, but of course she took me to hospital to get me checked out. She had to carry me into the hospital because I couldn’t walk but they told her it was a viral infection that would resolve on its own and sent us on our way.

Fast forward to 2018 and it happened again. I was 14 and in Year 8 at school. Suddenly, I was on the floor, and I couldn’t walk. Mum took me back to hospital, but this time the Doctor diagnosed it as anxiety, prescribed me with anxiety medication and we were sent home again.

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Then in Year 9, my arm stopped working properly at work. We went to the hospital again and they said it was due to a redback spider bite, because I think I had what looked like a little mosquito bite on my arm.

Towards the end of Year 9, I completely lost my sense of smell. This was around the time of the big SA bushfires in 2019. The fires were right by our house, and you could see smoke billowing over. My Mum knew something wasn’t right because I couldn’t smell a thing.

We went to Flinders Medical Centre, and they performed an allergy pin prick test. Nothing flagged as an allergy, so they booked me in for an ENT appointment in July of 2020. They did their exam and couldn’t find anything physically wrong with my nose. As part of that exam though, they did a CT scan on my nose, and told us to come back in August for the results.

In August 2020, the ENT Doctor called us and told us that the CT scan had picked up a small lump in my brain, they didn’t know what it was, but it wasn’t normal, and I needed to come back in for an MRI. The scan also found that I had Chiari malformation, which means part of my brain was falling out of my skull because my skull never formed completely.

The MRI scan came back and at first it was diagnosed as a cyst. However, on October 10th. 2020 I was at school and suddenly I could not take a step without vomiting. At the time I remember being so embarrassed because I was at school. My friend had to help walk me to the office and I called my Mum and since my recent scans had been done at Memorial, she decided to take me to the Women’s and Children’s where they did another scan.

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I was in the emergency bay and some neurosurgeons came over. I thought that was weird because at that point we were not even thinking about brain surgery. That’s when we found out the cyst was actually a tumour. I was assigned two neurosurgeons, Dr Xenia Doorenbosch for the brain tumour and Dr Stephen Santoreneos for the Chiari malformation. There was discussion about which condition needed to be treated first. I was in hospital for 3 days of observation, discharged on the 12 October and then came back on the 22 Oct for my decompression surgery to address the Chiari Malformation. Essentially, they cut through the back of the head, removed some of the skull bone, spinal column, and cerebellar tissue. The surgery went fine, but it was a horrible recovery.

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3 weeks later on the 27th of November, I went back to hospital have my brain tumour removed. It was the day before my 16th birthday, which I was not very happy about. The surgery was very difficult. The tumour was hard to visualise because of its position deep inside my brain so they had to use special equipment and visualise it on a monitor. I believe Xenia had to consult with surgeons in the US because the operation was so complex. They removed most of the tumour but could not get it all as it was too dangerous. They were able to test what they did get which is when they determined it was a DNET tumour, a type of tumour accounts for about 1-2% of brain tumours, so it’s quite rare even for a brain tumour. It’s benign so hopefully it won’t grow back. They closed me up and told my mum I would be out in ICU shortly, but I had a brain bleed and had to be taken back to theatre for evacuation of a hematoma that same day.

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After the second surgery I had no movement on one side, and I wasn’t very responsive. My Dad had a stroke when I was 11 so my mum recognised the signs. They considered putting me in an induced coma but decided it was safer to let me wake up and assess. When I woke up several hours after surgery, I was the happiest I’ve ever been, but to a level that was almost concerning. It turns out that I had some acquired brain damage which probably explains the extreme euphoria.

After the stroke they put me on steroids. They made me ravenous, but I had no short-term memory so I would forget that I had eaten, and it would be really hard for anyone to convince me otherwise. I became quite well known to the nurses as the cheese toastie girl.

In May 2021 I started vomiting again every day, so I went back to the ER. They decided having an ICP would help get some answers, so I came back to the hospital where they shaved my head and put in an Intracranial pressure monitor to check. I vomited every day for months but the results came back normal so they couldn’t explain it. Even now I still have issues with vomiting, I just don’t know when it’s going to happen. In April 2022, I had a lumbar puncture to look into it but came back normal so still no answer. That recovery was pretty horrible too. I have to take medication to manage it and residual nerve pain. I’ve had a team of specialists throughout my journey; eye doctors, oncologists, pain doctors, neurosurgeons, rehab, speech, OT and physio. Unfortunately, the one thing they agree on when I experience symptoms that can’t be explained is that I’m a very complicated case!

These days I still have weakness on one side, I lost vision in my right eye, and I can get a lot of ringing in my ears. I get regular check-ups and my last one was about a month ago. I’m studying a nursing VET course and I hope I can get into paediatrics. I’m still a bit forgetful but overall I’m actually a much more positive person now. I feel like it’s given me a different outlook. I used to be much more reserved and not want to try things, but now I think you only get one life just do it!”

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Ella recently celebrated her 18th Birthday and graduated high school, with plans to pursue paediatric nursing so she can give back and provide the same support that she received throughout her treatment and recovery. Happy Birthday Ella! Thank you so much for sharing your story.

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Ella was also recently featured in an ABC news interview, as she was the first patient to undergo surgery at the Adelaide Women’s and Children’s Hospital utilising a special updated endoscope that allows for a smaller incision, faster recovery times and less scarring. Thanks to the Wilkins Family Foundation and all our generous donors, the NeuroSurgical Research Foundation was able to fund the purchase of this piece of equipment, meaning access to safer less-invasive brain surgery for Adelaide children.

If you would like to support life-changing research and equipment, please donate to the NRF today.

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