Nancy Dakin, a joyful three-year-old from Leicestershire, was just 12 months old when she began experiencing persistent vomiting in September 2023, initially thought to be caused by tonsillitis. As her symptoms worsened and she developed tremors and lost previously developed skills, an MRI revealed a large brain tumour on her left frontal lobe. The tumour was thought to be inoperable, but further assessment showed it was compressing her brain rather than infiltrating it. Nancy underwent two major surgeries to remove the tumour, later diagnosed as an aggressive ependymoma, before beginning intensive chemotherapy at Queen's Medical Centre in Nottingham. After a year of treatment, she completed chemotherapy in January 2025 and is now in remission, with her family holding onto hope for a happy, healthy future while raising awareness of childhood brain tumours.
Here is Nancy’s story, as told by her mum, Gemma…
Nancy is our little whirlwind. She’s cheeky, funny, and completely full of life, and everywhere she goes you can hear laughter. She loves being outside, especially playing football or catch in the garden with her big brother Mickey, and going to the park is her favourite thing at the moment. It’s actually quite hard to get her home once we’re there.
Looking back, everything started in September 2023 when Nancy was just 12 months old. She began vomiting on and off, and at first, we thought it might be linked to tonsillitis, as we had been told, so she was given different antibiotics. After about a week, I took her to Loughborough Urgent Treatment Centre, but the vomiting didn’t stop and continued for weeks despite the medication.
There were no other obvious signs at first, nothing that made us think it could be something serious. But over time, things began to change.
Nancy developed tremors in her right arm and became pale, grey, and lifeless.
She regressed completely, losing the ability to sit up properly, walk, crawl or talk, and it felt like she had gone back to being a baby overnight. Watching this happen was incredibly frightening, and I knew something wasn’t right.
When we went to Royal Derby Hospital A&E, we were told she was just dehydrated from vomiting, but I refused to leave because I knew something was seriously wrong with my child. The frustration of not being listened to while watching her deteriorate was overwhelming, and the anxiety of the situation began to take its toll on me too.
Eventually, someone listened and Nancy was admitted to a ward where she had an EEG and an MRI scan. A few hours later, a doctor and a nurse came into the room where me, Nancy and her dad, Sam, were sitting and told us they had found a large tumour on her brain.
They explained that the brain tumour was so big that if they operated, Nancy would die, and that the best they could do was to make her comfortable.
Hearing those words was devastating, and in that moment, our whole world came crashing down in a way that is impossible to put into words.
That same night, we were transferred to Queen's Medical Centre (QMC) in Nottingham, where everything changed. We were met by an incredible nurse who reassured us and explained that we should never have been given that kind of information so early. She acted quickly, getting Nancy on fluids, IV morphine, and steroids to reduce the swelling on her brain, which helped to stabilise her.
Within an hour, a neurosurgeon came to speak to us and explained that the tumour had not taken over the left side of Nancy’s brain as we had first been told. Instead, it was lying on top of it and was so large that it was compressing her brain. For the first time since hearing the diagnosis, we felt a sense of hope.
The following morning, after another MRI scan, Nancy’s lead surgeon met with us and explained that he would operate in six days’ time to try to remove as much of the tumour as possible. He successfully removed 95% of it during the first surgery, leaving a small portion behind because of the risk it posed to her mobility.
The tumour was later diagnosed as a grade 3 ependymoma, an aggressive form of brain cancer.
Two weeks later, he operated again and was able to remove the remaining tumour without causing paralysis, which was an incredible outcome for such a high-risk procedure.
Nancy began high-dose chemotherapy in December 2023 at Queen's Medical Centre when she was just 15 months old. The treatment was extremely challenging for her, as she wasn’t able to get out of her cot and play while the chemotherapy was running. It made her very poorly, drowsy and constantly sick.
She began to associate sickness with food and eventually stopped eating altogether, which led to her having an NG tube fitted for feeding. She found having the tube replaced particularly distressing, which was difficult for us to watch.
During her treatment, Nancy also had one of her ovaries removed and preserved due to the potential impact chemotherapy could have on her future fertility.
It was an incredibly difficult decision, but one that gave her the best chance for the future.
At the beginning, Nancy struggled because her routine had completely disappeared, but over time she adapted to being in and out of hospital and gradually returned to her usual cheeky self.
There were many moments during treatment that stood out, but one of the most difficult was following her ovary removal surgery. Although she had coped remarkably well with brain surgery, chemotherapy and having a Hickman line fitted, this experience was different. After the operation, she was in severe pain and couldn’t be comforted, despite the efforts of the medical team to manage it with medication.
As parents, we felt completely helpless watching her in that state, knowing there was nothing we could do to take the pain away. After hours of distress, she eventually cried herself to sleep, and although she improved slightly once we got her home and gave her medication, she remained unsettled for several days. It was one of the hardest parts of the entire journey.
Nancy’s illness also had a profound impact on her big brother Mickey, now six, who has been her biggest supporter throughout. He wanted to be with her constantly, visiting her in hospital every day after school and refusing to do anything at the weekends without seeing her first.
Even now, Mickey becomes upset if Nancy is unwell because he fears she may have to go back into hospital again.
Nancy completed her chemotherapy on 6th January 2025 and rang the bell, marking the end of an incredibly challenging chapter. Now, one year on, she is thriving and enjoying life as a happy three-year-old. It was a moment we didn’t think we would see.
She attends nursery two days a week, which she absolutely loves, and spends her time playing, laughing and being outdoors with Mickey. Although she does have some lasting side effects, including high-pitch hearing loss and some difficulty understanding her emotions, she continues to do incredibly well.
Going for follow-up scans is still very difficult, as returning to the hospital brings back many memories, both good and bad. The waiting period between scans and results is particularly hard, often filled with sleepless nights and worry, even though she currently shows no signs of recurrence.
Looking ahead, our hope for Nancy’s future is simply that she remains cancer-free and goes on to live a normal, happy life.
If there is one thing I would say to other parents, it is to trust your instincts. If you feel that something is not right with your child, go straight to A&E and do not let anyone dismiss your concerns. You know your child better than anyone, and it is important to keep pushing until you are heard.
To help make a difference, I’m taking on the 200k in May Your Way challenge to raise money for Brain Tumour Research. During Nancy’s treatment, I learned that research in this disease receives the least funding of all cancer types, despite being the biggest cancer killer of children and adults under 40, and that is something I feel strongly needs to change.
I plan to complete the 200k by walking, running and indoor cycling, with Nancy and Mickey joining me on many of the walks when they can. Balancing the challenge alongside being Nancy’s full-time carer won’t be easy, especially with the hills where we live, but we’ll take it one day at a time and get through it together.
On the tougher days, my motivation will always be Nancy and the knowledge that research has already helped save her life.
After everything we’ve been through, this challenge feels both difficult and rewarding, and I hope it can help make a difference for other families in the future.
Together, we can and will beat brain tumours.
Gemma Dakin
April 2026
One in three people in the UK knows someone affected by a brain tumour. This disease is indiscriminate; it can affect anyone at any age. What’s more, brain tumours continue to kill more children and adults under the age of 40 than any other cancer yet, to date, 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 inspired by Nancy’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
Together we will find a cure.
