Olivia’s Brain Tumour Story

At just 18 months old, Olivia was diagnosed with an inoperable brain tumour that left her blind. Her father, Matthew, shares their family’s journey of resilience, love, and hope.

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Early diagnosis

In January 2018, my wife Lisa and I sat in a consultation room to receive the news that would change our lives forever. Olivia, our 18 months old daughter, had a massive brain tumour. For months, we sensed something was wrong. On so many occasions we were reassured that it was normal, or that she was just a “Dolly Daydreamer”. But finally, we had an answer on why she kept on falling over and why her speech was regressing.

After extensive scans and consultations with leading specialists, we were told the tumour was inoperable due to its location. Her consultant described it as “vision-threatening”. Surgery would mean complete loss of vision as the tumour had engulfed both optic nerves. Chemotherapy was the only option.

Losing her vision

But it was too late for her vision as one morning Olivia woke up crying and screaming in pain – her vision had gone. The best way I describe this is when you overload a plastic shopping bag and when the bag snaps, everything falls out – that’s what happened with her optic nerves, there was too much pressure for a long period.

Despite this, Olivia has adapted incredibly well. She’s blind and living with a brain tumour, yet she radiates joy and resilience. I always say that without visual influence, she’s developed a unique and beautiful personality that everyone falls in love with.

One morning Olivia woke up crying and screaming in pain – her vision had gone

Hope in a kinder treatment

Since her diagnosis at 18 months, Olivia has never stopped treatment. The tumour shrinks with chemotherapy, only to grow again months later. The relentless cycle has taken a toll on her – extreme fatigue, violent sickness, and more. Yet Olivia faces each day with bravery – I am so proud of her, she’s my role model.

This year, Olivia began a new clinical trial with the NHS. She’s previously been on Vincristine/Carboplatin (treatment 1), Vinblastine/Carboplatin, then Vinblastine (treatment 2), Bevacizumab/Irinotecan (treatment 3), and currently on Trametinib/Dabrafenib – one of the first children in the UK to receive this drug through the NHS. This new plan offers hope for fewer long-term side effects, something we deeply care about for Olivia’s future.

All her favourite things

Olivia doesn’t let anything hold her back. She takes part in junior park runs, theatre school, ballet, Brownies, and swimming. Her clubs have been amazing in adapting their lessons.

She loves using her imagination building with LEGO, acting, making bracelets, and playing with her little sister, Imogen.

Olivia also loves to sing. She was part of the choir featured in the King’s Christmas speech last year, which led to a personal invitation to sing for the Queen during afternoon tea!

Thriving at school

Despite frequent hospital appointments, Olivia maintains an impressive 86% school attendance. She never wants to miss a school day. She’s allowed power naps during the day as her energy levels would drop without a rest. She doesn’t just have to deal with the tiredness but also as a visually impaired student.

She’s learned Level 2 Braille and thrives at school. She’s made so many friends who see Olivia as Olivia – although it does help slightly when you’ve had afternoon tea with the Queen, and recently starred in Eastenders!

Imogen – Olivia’s little rock

Imogen was born two years into Olivia’s treatment and has been Olivia’s little rock. Siblings can sometimes feel overlooked, but Imogen has been at multiple appointments as Olivia’s little cheerleader and helps guide her at their school clubs. At just six years old, she’s wise beyond her years and would do anything for her sister. I am so lucky to have two amazing girls.

Day to day

Since Olivia’s diagnosis, my life has changed. I have run multiple marathons to support my mental health, spent countless nights on uncomfortable hospital beds, and have watched friends depart, but gained new ones. It has been tough on both Lisa and I, but we take it day by day. Lisa has been my rock, and I have seen how hard this has been for her. I hope no family ever has to go through this, but the reality is, many will.

I hope no family ever has to go through this, but the reality is, many will.

A shining light

As Olivia’s journey continues, I remind her never to let anyone dull her sparkle. She is a shining light in this world. With everything she has been through, I hope that she is an inspiration to others.

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