Following his brain tumour diagnosis four years ago, Jamie, 18, from Frizington in Cumbria, has decided to join us as a Young Ambassador. The role will see him support other children and young adults who are facing a brain tumour diagnosis by bravely sharing his story with the media and through our social and marketing channels, raising awareness of childhood brain tumours and taking part in our events. We are so delighted to welcome him to the Young Ambassador team and grateful for him telling his story.
Jamie’s story: –
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, this 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 Jamie remains under the care of the Royal Victoria Infirmary and Clinical Psychologist, Dr Sarah Verity at Great North Children’s Hospital in Newcastle and Dr Becky Hill and the Endocrine team at the Royal Victoria Hospital.
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) – this 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.
During Jamie’s treatment he lost all of his hair and looked unwell. 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 – they stopped messaging and visiting. He experienced a number of inappropriate remarks from peers who didn’t understand his condition. He does say though that in general his school was very supportive and helped him to get through his GCSE’s.
Longer term Jamie finds organisation a challenge, sometimes struggles with motivation, and faces slower processing speeds and memory issues. Things take a bit longer for Jamie and this is an area which he will battle with in adulthood as people can’t see that he has a disability so they may rush him and get impatient. Jamie also experiences anxiety around things which are potentially dangerous and large crowds, but he is trying to overcome this.
Jamie is currently studying for his A-levels in Music and Maths and has been volunteering with Sunbeams, a music therapy charity – which uses music to help adults and children with special educational needs. Jamie is considering at a career in either 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, says: “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 GCSE’s 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 says: “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.”
Our Young Ambassadors
