Ellie Watts, a University of Greenwich criminology and criminal justice undergraduate from Dartford, Kent, was diagnosed with a grade 1 pilocytic astrocytoma and found to be suffering from hydrocephalus in August 2022. She underwent surgery in which most of her tumour was removed and remained stable for 14 months before showing further signs of hydrocephalus. Sadly, she suffered a cardiac arrest and, despite being revived and undergoing further surgery, she died in October 2023, aged 19.
Here is Ellie’s story, as told by her mum Catherine …
Ellie was pretty special. She was full of fun and just the most amazing person to be around. She’d never been diagnosed with autism but she was definitely on the spectrum because she was quirky and had her little ways about her. As a child I treated her as spirited or naughty and I think that stood her in good stead because from her early teens she became more aware of herself and turned things around. She developed into the loveliest person who cared about everybody. She was so supportive of her sister, who’s two years younger, and when she interacted with people she did so without judgement and without any of the unconscious bias others have. She took everyone at face value and was really kind.
“All the tributes we got following her death spoke about how beautiful she was inside and out, and about her smile and positivity.”
I first noticed Ellie’s symptoms in late August 2021 when I took her for a final dress fitting ahead of my wedding the following month. She was almost swaying and said she felt a bit unsteady and had been getting dizzy. At 5ft 3in, and weighing just eight and a half stone, she was tiny and I thought she probably just needed some water. When she was still getting dizzy in October, I told her to go see the doctor to get checked out. Ellie had some blood tests, which came back normal, and was asked to return to get her B12 level tested, which also came back fine. We made another appointment in January to discuss what was next and were told she was probably deficient in vitamin D. She was told to take an antihistamine to help with her dizziness and to drink more water. This seemed to work but in April she began experiencing nausea and vomiting. By then she was going out socially and we put it down to something she’d had to eat or drink.
By the time she turned 18 in May, Ellie had a part-time job at John Lewis, Bluewater, but she’d had to take a couple of days off. The vomiting, which seemed to come out of nowhere, had continued and Ellie said she’d also had a couple of headaches, although I suspect she’d had more. I also sometimes noticed she had sweat on her top lip. We managed to get an appointment with our practice nurse in June. She did lots of tests and sent Ellie for an MRI scan to rule out a few things. This took place at a private clinic in Hornchurch, Essex, at the start of August 2022.
“There we were told they’d found an abnormality and given a letter and disk to take straight to A&E.”
Soon after arriving at Darent Valley Hospital, Ellie was admitted, strapped up to machines, fitted with a cannula and had her bloods taken. After a few hours, we were told a radiologist was on their way to look at her scans while the doctors were talking to colleagues at King’s College Hospital, which is our closest neuro hospital. The next thing we knew, we were being told Ellie had a brain tumour. I burst into tears as she told me not to worry and everything would be alright. I just remember being really forlorn that day. Ellie hated hospitals and was adamant she wasn’t staying so I took her to get some fresh air.
“I was struggling to breathe and felt so bad that Ellie was having to hold me up when it was her who had the brain tumour.”
I rang my husband, Chris, who arrived five minutes later and we were blue-lighted to King’s, where we learned Ellie also had hydrocephalus. An hour later, a man walked in and started talking to us. He looked very young and was dressed in jeans but he was a neurosurgeon and it was clear he knew what he was talking about. I felt instantly at ease. He told us Ellie had a tumour in her cerebellum which was pressing on her brain stem and causing a build-up of fluid. He said she may need surgery that night to relieve the pressure on her brain but he wanted to do his own scans and sent Ellie for a contrast MRI. It turned out Ellie’s hydrocephalus was being controlled by the steroids she was taking and so she didn’t need to have a shunt fitted after all. She was kept on the high dependency unit to be monitored until her debulking surgery three days later.
“Even though Ellie was 18, I was allowed to stay with her at King’s and I was given a gown so I could accompany her into theatre on the day of her op.”
She was in surgery for seven hours and in recovery for two. Within 48 hours she was demanding the removal of her cannula and she was able to walk unaided by the time she was discharged six days later. Her recovery continued at home and five weeks later she returned to her part-time job. A week after that, she started university. Her scan in November showed a bit of fluid in her cerebellum but by January this looked better and she was moved to six-monthly months. After her last one in July 2023, she was told everything looked fine and her tumour remained stable.
Ellie started getting headaches at the beginning of October but she’d had them a few days before she told me. As soon as she started vomiting, I said ‘that’s it, we’re going to A&E’. I explained Ellie’s history to the nurse on the door at Darent Valley. I said she had a residual piece of a grade 1 astrocytoma in her brain stem following surgery in August 2022 and had been getting sharp pains in her head lasting up to two minutes and had been sick. I also told her I believed Ellie was suffering from hydrocephalus because her symptoms were identical the last time she had it. We were told to check in at reception and wait in A&E. When Ellie was called through, I reiterated my concerns about hydrocephalus and Ellie asked to have some pain relief. After having some blood tests and a cannula fitted, Ellie was sent back to the waiting room in A&E where a tannoy announcement informed us there was a four-hour wait for non-life-threatening injuries.
“Ellie began dripping with sweat and became uncoordinated.”
I was having to support her as we were called into a room with only a chair and a desk. Ellie’s hair was soaked and I thought she was going to pass out as I sat her down. I told the doctor what was happening and said ‘this is really serious, you have to help her, now’. ‘Oh my God’, she said, before leaving and returning with a wheelchair, looking really panicked. She literally ran Ellie up to the CT scanner with me in front opening doors. When the images appeared on the doctor’s computer, she didn’t seem concerned and told me there were no signs of hydrocephalus. I was still concerned about Ellie but I was relieved to know that wasn’t the problem.
We’d been back in the waiting room a couple of hours when a nurse called Ellie’s name and a doctor came running out. She shouted for a wheelchair and said ‘get her into resus, she’s got hydrocephalus’. Ellie had been given codeine but was still in a lot of pain so was given morphine, which more or less knocked her out. A registrar looked in her eyes and said there wasn’t anything wrong with the blood vessels behind them. I asked if they’d spoken to King’s and said I thought that’s where Ellie should be. I was told King’s wouldn’t accept her, but I was sure they would because she was a patient there and so I begged someone to speak to them.
“I was told we needed to wait three more hours so Ellie could have an MRI scan but I knew she didn’t have that long and said I wanted her transferred.”
Finally, at 5:45am, an ambulance arrived. Just as it was about to leave, Ellie started making strange noises and the driver rushed to get a registrar. Ellie was taken off the ambulance to be stabilised and as soon as she got to resus, they started CPR. It took eight minutes to get her back and she never woke up again after that. Chris and I were told to make our way to King’s whilst a critical care team transported Ellie, but then we were called back because Ellie’s pupils were blown and they weren’t sure King’s would accept her. There were discussions about using a helicopter to transport her but eventually it was decided to go by ambulance, which took just 40 minutes in rush hour traffic. When we arrived, a team were waiting in theatre to operate.
We were told Ellie’s brain hadn’t responded to surgery how they would have liked but they would monitor her and see what happened in critical care. A scan the following morning revealed Ellie’s brain stem had been pushed into her spine. We were told the damage was catastrophic and the only thing keeping her alive was her life-support. She was on the donor list, so kept alive until the following day. We handed her over to the organ donation team at 6pm on 8 October. In total, my wonderful 19-year-old daughter donated five organs. It was a rollercoaster of a weekend but Ellie’s family and close friends all got to say their goodbyes. There were 150 people at Ellie’s funeral, 55 from John Lewis where she had worked for two and a half years.
“Ellie’s death is a massive loss but she will live on, not just in those people to whom she donated organs but in all those who knew and loved her.”
We set up a much-loved page following Ellie’s death and chose Brain Tumour Research as the recipient, raising £2,755. This is enough to fund a day of research at one of the charity’s four Centres of Excellence and we’re proud to have done that in Ellie’s name. I’m also going to be running the Norfolk Marathon for the charity on 28 April 2024. I’ve never run more than a 10k but I thought training for a marathon would give me something to focus on because I do miss Ellie terribly. She was a positive person, however, and I know I need to try and carry that forward. Anyone wishing to sponsor me can do so at www.justgiving.com/page/catherine-warke.
Catherine O’Connor
November 2023
Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet just 1% of the national spend on cancer research has been allocated to this devastating disease since records began in 2002.
Brain Tumour Research is determined to change this.
If you have been touched by Ellie’s story you may like to make a donation via www.braintumourresearch.org/donate or leave a gift in your will via www.braintumourresearch.org/legacy