'Little warrior', 10, with two brain tumours inspires Milton Keynes family fundraiser

Elsie Pyner with her aunt Lindsey McCluskie. Credit: Brain Tumour Research

A 10-year-old girl who has undergone treatment for two unrelated brain tumours has been described as a "little warrior", as she inspires her family to raise money for research into the condition.

Elsie Pyner was first diagnosed with a grade 4 medulloblastoma in March 2015 at the age of two, and underwent emergency brain surgery, during which she suffered a major haemorrhage.

That led to the youngster from Newport Pagnell near Milton Keynes developing a condition known as posterior fossa syndrome, which can cause changes in speech, movement, emotions and behaviour.

Now her aunt Lindsey McCluskie is taking part in a month-long fundraiser to raise money for the charity Brain Tumour Research.

"Your life changes forever after a brain tumour diagnosis. You don’t think something like that will ever happen to your family," said Ms McCluskie, 48.

"I watched my sister’s world come crashing down and saw her somehow find the strength to carry on because she has another daughter too, who was six when Elsie was first diagnosed.

“It’s horrible to watch what they’re going through and know you can’t fix it. We hold our breath and pray every time Elsie has a scan. She’s the baby of the family so it’s really tough.

"She suffered lots of side-effects from her first operation and has her everyday struggles but just gets on with it. She’s our little warrior, our miracle, and a very cheeky little girl."

Elsie now wears hearing aids because of the high-grade chemotherapy used to treat her brain tumour. Credit: Brain Tumour Research

After the diagnosis of her first tumour, Elsie also developed selective mutism, a severe anxiety disorder which makes her unable to speak in certain social situations, and a processing delay.

She went on to have five months of intensive chemotherapy and more surgery on the tumour, followed by high-dose chemotherapy and a stem cell transplant.

In March 2020, a routine MRI scan showed a second tumour, thought to be a relapse of Elsie’s cancerous medulloblastoma - and her parents were told that treatment would be palliative rather than life-saving.

But after two more operations, doctors realised her second tumour was entirely unrelated to the first, and the 10-year-old is now being monitored with six-monthly scans.

Elsie’s ordeal has inspired her aunt to take part in the Brain Tumour Research charity’s 100 Squats or Star Jumps a day in November Challenge.

Ms McCluskie said she had managed to persuade seven work colleagues from Milton Keynes-based Display Creatives UK to take part alongside her.

Ms McCluskie has roped in work colleagues to help with the fundraiser. Credit: Brain Tumour Research

Having seen what her niece had endured has inspired her to do her bit.

“I didn’t know anything about brain tumours before Elsie got sick but now I know they’re the biggest cancer killer of children and young people under 40, which is terrible," she said.

"There needs to be more research and more funding to help other families going through this because it’s a horrible disease and shouldn’t happen, especially to children.”

Her sister and Elsie’s mum, Kate Pyner said: “I think what Lindsey’s doing is incredible. It’s her way of feeling like she’s doing something for us and everybody else affected whilst raising much-needed awareness of brain tumours.”

Charlie Allsebrook, community development manager for Brain Tumour Research, said: “Elsie’s heart-breaking story serves as a stark reminder of just how indiscriminate brain tumours are, affecting anyone at any age, time, or place. They kill more children than leukaemia and any other cancer, yet, historically, just 1% of the national spend on cancer research has been allocated to this devastating disease."

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