Woodbridge mum shares heartbreaking moment she learned young daughter had a brain tumour as part of national campaign

A Suffolk mum has described the heartbreaking moment she learned her young daughter had a brain tumour.

Camille, of Woodbridge, was diagnosed with an Ependymoma brain tumour in 2009 aged just 16 months.

Mum Hayley said she felt disconnected from reality upon learning of the diagnosis.

She has shared her story for Brain Tumour Awareness Month and in support of a national campaign by mental health charity Tom’s Trust.

Hayley said: “When we were first told that there was a large mass in Camille’s brain, it just changed our lives forever.

“I’m not sure we really knew the impact at that moment, because nobody mentioned the ‘cancer’ word and there was a part of me thinking ‘oh that’s fine, we’ll get it removed’ – and then slowly the reality sunk in.

“As the consultant kept talking, I can only describe it as feeling like an out of body experience like I was being recorded, and this was some sort of game show.

“The other way I’ve described it over the years is also like this feeling, and I think those feelings came later when we got more information, and it just felt very much like being buried alive because there’s no running away from it.”

Ependymoma is a rare type of brain tumour which is more common in adults than children.

Tom’s Trust estimates that about 500 people aged 19 or under are diagnosed with a brain tumour each year.

Hayley said Camille spent two years undergoing treatment, including gruelling high-dose chemotherapy, three resections and ‘aggressive’ radiotherapy.

She told of the effect going through treatment at such a young age had on her, including how she became anxious, her difficulty trusting anyone outside her family and how she could easily become agitated in hospital.

Camille is now 17 but Hayley said the her family’s lives have not been the same since.

When Camille was going through treatment, Hayley said, the hospital did not have the resources to support her with her fears and emotional difficulties.

Tom’s Trust offered a dedicated team, with Camille going through cognitive behavioural therapy.

This helped make medical procedures easier and helped her be honest with her feelings.

The charity provides mental health support for children and young people, with tumours in the brain or other parts of the central nervous system.

Its campaign seeks to shine a light on the devastation, loneliness, and uncertainty that parents face when given the news and how it can support children and their families.

Hayley added: “The support, looking back now, pre-treatment and post treatment, it’s just been outstanding.

“We know we can pick up the phone and call the team at any time and they will very quickly help us with whatever we need.

“We have that continuity with Tom’s Trust that we can really rely on, and you know, they’ve just been fantastic, they really have.”