Northallerton woman opens up about brain tumour diagnosis at age four

Naomi Savage, 20, hadn’t even started school when she was diagnosed with a grade 3 ependymoma brain tumour back in 2007.

Today, she is a student doing a degree in Film and TV production at Northumbria University and hoping to work in factual TV: “the news and documentaries are what interest me most” Naomi says.

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But during her early years, Naomi endured three lots of surgery as well as gruelling chemotherapy and now has life-changing effects following her treatment.

The diagnosis came after Naomi’s mum, Lucy, a nurse, noticed very subtle symptoms, including a slight squint in her daughter’s right eye and a tremor in her right hand and leg, and decided to take her to A&E to be checked out.

Her swift thinking led to medics doing a CT scan.

Lucy said: “In the shortest space of time, our whole world turned upside down, but we were mercifully shrouded in the protective cotton wool of shock.

Amy, Naomi & Lucy Savage on a much earlier Wear A Hat Day (Image: NORTHERN ECHO)

"I remember watching Naomi sit calmly and happily, watching a magician on the children’s ward, whilst tears streamed down my face.

"She was oblivious to the shattering news we had just heard.”

Naomi was rushed by ambulance from the Friarage Hospital in Northallerton to Leeds General Infirmary for surgery to remove a massive tumour which was 10cm x 10cm in size.

Lucy added: “Our hopes that the tumour might be benign were shattered when the oncologist revealed that Naomi had a grade three ependymoma.

"The chemotherapy regime she embarked on was horrific. As an adult chemotherapy nurse, I was used to treating patients on a day-care basis.

Amy & Naomi Savage (2) (Image: NORTHERN ECHO)

"I didn’t even know regimens like hers existed. Naomi endured five different chemo drugs administered across four cycles every fortnight, totalling 28 sessions over 15 months – most of these as an inpatient.”

Later that year, Naomi underwent a second craniotomy to remove more of the tumour, after which she continued with chemo.

In 2008, a third and final operation took away the last bit of tumour, but also meant she lost the right peripheral vision of each eye. 

“It means that often I miss things, like a friend waving at me and I am hopeless at catching! It also means I won’t ever be able to have a driving licence, which didn’t bother me initially, but now that I am older, is quite frustrating as it means I have to rely on other people rather than being independent” said Naomi.

“I also have to contend with processing issues, so I am a bit slower at learning new things or getting what people are saying or doing. For example, it took me a long time to pick up how to use a cooker.”

Naomi, Lucy & Amy Savage looking forward to Wear A Hat Day (Image: NORTHERN ECHO)

Naomi continues to have regular MRI scans – now every two years – to check that the brain tumour isn’t growing again.

She also had a fit a couple of years ago when she went out for a meal on A Level results day, but was told the fit could have been linked to the tumour, although it was unlikely.

Making the decision to “try and do something to raise money to help research into brain tumours”, Lucy set up Naomi’s Fight for Life Fund in 2008, which became a Fundraising Group under the umbrella of national charity Brain Tumour Research.

“Over the years we’ve raised more than £70,000 which is helping find more effective, less brutal treatments and ultimately a cure for brain tumours” said Naomi.

Brain Tumour Awareness Month culminates in Brain Tumour Research’s biggest campaign, one of the UK’s most popular annual fundraisers – Wear A Hat Day, on 31 March when people look super for science and help research breakthroughs happen by putting on a hat, taking a selfie to share on social media and making a donation.