Frizington teenager helps others battling childhood brain tumours

Following his brain tumour diagnosis four years ago, Jamie Brannon, 18, of Frizington, has made the brave move to join children’s brain tumour charity, Tom’s Trust, as a Young Ambassador.

The role will see him support other children and young adults who are facing a brain tumour diagnosis by sharing his story and raising awareness of childhood brain tumours.

Jamie was diagnosed with a cancerous metastatic midbrain Germinoma in December 2020 at the age of 14.

He first had a ventriculoperitoneal shunt inserted due to reoccurring life-threatening hydrocephalus – a procedure to drain extra cerebrospinal fluid from Jamie’s brain and reduce pressure, which needed redoing in 2021.

His brain tumour was then successfully treated at the Proton Beam Radiotherapy Centre at Christies in Manchester. Jamie received 25 sessions - 10 to his brain and spine, and 15 to other areas of his brain.

Post treatment, the Keswick School student remains under the care of the Royal Victoria Infirmary in Newcastle.

Jamie’s tumour affected his pituitary gland, so Jamie has no signal from his brain to his endocrine system. This means he must take all of his hormones orally or by injection.

When diagnosed, he was very unwell due to adrenal insufficiency (having no cortisol), which can be life threatening. The tumour and hydrocephalus affected his optic nerve and eyes which led to vision problems.

Jamie also experiences issues with his balance and has undertaken 18 months of physiotherapy to help his balance and strength, and to assist with him being able to walk ‘normally’ again.

For Jamie, the worst of his resulting conditions was the fatigue he experienced. It lasted for 18 months and was a result of his hydrocephalus and radiotherapy.

 When he returned to school was moved back a year as he had missed so much of the school year. It was an extremely difficult time for him, as he lost all his original year group friends.

Longer term, Jamie finds organisation a challenge, sometimes struggles with motivation, and faces slower processing speeds and memory issues. He also experiences anxiety around things which are potentially dangerous and large crowds, but he is trying to overcome this.

Jamie Bannon proudly holds his exam results after undergoing lifesaving treatment for a brain tumour (Image: Family handout)

Jamie is currently studying for A-levels in music, maths and physics and has been volunteering with Sunbeams, a music therapy charity – which uses music to help adults and children with special educational needs.

He is considering a career in music therapy or as a special educational needs and disabilities teaching assistant, the excellent care he received from his TAs at school has inspired this choice.

Jamie’s mum, Rhona, said: “Jamie has never complained or felt sorry for himself. He has got on with his treatment and faced the aftereffects with determination, positivity and kindness.

“It has been so difficult for him, and he has worked so hard to get through post treatment life, his GCSEs and beyond. Everyone who meets him loves him and we are extremely proud of him.

“He is really excited about becoming a Young Ambassador for Tom’s Trust. As a family, we have said, ,wouldn’t it have been lovely to have seen/met someone like Jamie and hear his story when we were at the depths of darkness in our brain tumour journey'.”

Laura Bowditch, family liaison coordinator at Tom’s Trust said: “We are delighted to have Jamie on board. He tells his story so powerfully and has such enthusiasm for helping others. Jamie sharing his story will help so many others feel less alone as they face this devastating diagnosis. We are so grateful.”

Tom’s Trust is the UK's only charity dedicated to providing mental health support to children, with brain and other central nervous system tumours, and their families.

Tom’s Trust clinical psychologists support hundreds of children, and thousands of families, within hospitals in the East, North-East and North-West, helping children from diagnosis, through their brutal treatment and as they return to life at home.

To find out more about Tom’s Trust go to www.tomstrust.org.uk