Nancy's Brain Tumour Story

The initial symptoms

At the end of September 2023, Nancy began to feel very poorly, experiencing severe vomiting. Concerned, we took her to a local walk-in centre since we couldn’t get an appointment with our GP. They diagnosed her with tonsillitis and prescribed antibiotics, but the vomiting didn’t stop. Two days later, we returned, and they suspected an allergy to the antibiotics and prescribed a different one. However, Nancy’s condition did not improve. Our GP then gave her antihistamines, but these also didn’t work.

Desperate for answers

Desperate for answers, we took Nancy to A&E. They conducted blood tests and swabs, but everything came back clear, and we were sent home. Over the next seven days, Nancy’s condition deteriorated rapidly. Our once happy 14-month-old had turned back into a new-born baby, lying lifeless on the sofa, unable to move, and her right arm began to shake uncontrollably. We rushed her back to A&E, where they administered anti-sickness medication and took more blood. Since the medication seemed to work, they wanted to send us home, but I refused.

How I found out my child had a brain tumour

After some time of arguing and refusing to leave the hospital, Nancy was taken to a ward and we were seen by a neurologist. We stayed the night and the next day she had an MRI. Less than an hour later, a doctor told us that the MRI revealed a large tumour on the left side of Nancy’s brain. Initially, we were told the tumour was inoperable and that surgery would be fatal. We were transferred to a different hospital, where we were met by a compassionate nurse who reassured us that this prognosis was incorrect and we should never have been told that. A neurosurgeon reviewed Nancy’s scan and discussed a plan of action. She was put on a steroid drip, which began to reduce the inflammation around the tumour and relieve the pressure on her brain.

The first surgery 

After six days in the ward, Nancy underwent brain surgery. Her surgeon and his team managed to remove 95% of the tumour, which was then sent for analysis. That night, Nancy experienced seizures and we had to spend the night in the ICU. The very big gap in between her brain and skull had filled with fluid and caused body spasms. She is now on anti-seizure medication to help this.

Nancy remained her cheerful self

The results confirmed the tumour was ependymoma, a type of brain tumour. The doctors decided to perform a second surgery to remove as much of the remaining tumour as possible to give chemotherapy the best chance of success. Remarkably, when they operated two weeks later, they found that the remaining tumour had already begun to die off, and they were able to remove it completely. Nancy was very swollen for about a week but remained her cheerful self.

Looking to the future

Two weeks after the last surgery, Nancy had a Hickman line fitted and received her first dose of chemotherapy. We were finally able to go home. Nancy will continue her chemotherapy until New Year’s Day 2025, provided her MRIs remain clear. Additionally, due to the high-strength chemotherapy, Nancy had to undergo surgery to remove and freeze one of her ovaries. This is because this type of treatment will make her infertile. I felt the need to share Nancy’s story so that other parents have an awareness of brain tumour symptoms. If you think your child is unwell and you aren’t being listened to, put your foot down and always get a second opinion. I’m so glad that we did.

Gemma, Nancy’s mum, June 2024

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