Stories of families affected by a brain tumour

Harry's Story

Harry’s mum Penny knew something wasn’t right for the three years before Harry was eventually diagnosed with a type of brain tumour called a ‘juvenile pilocytic astrocytoma (grade 1)’ at the age of 7. Since Harry was 5, Penny had been a regular visitor to the GP with Harry, reporting symptoms of extreme tiredness (Harry would sleep for 15/16 hours out of every 24) and wobbly handwriting (noticed by Harry’s schoolteacher). The GP explained that some children were just tired all the time.

After two years Harry was finally referred to a paediatrician. After an initial misdiagnosis, Harry’s tumour was diagnosed and he underwent surgery. Some months later the tumour regrew and Harry had a long course of chemotherapy.

Harry is now 16 and getting on with his life. He only has to have a scan once a year as his tumour has shown no signs of growth for over seven years. Harry is deaf in his left ear which Penny feels could have been avoided if Harry’s diagnosis had been made earlier by linking his symptoms and referring him for a scan.

Hannah’s Story

At the age of 14 Hannah started to have epileptic pauses and was eventually prescribed medication to help control them. When the fits became worse, her doctor ordered a scan to eliminate the possibility of a brain tumour – not expecting to find one. To the shock and disbelief of Hannah, her family and the doctor, the scan revealed a brain tumour that required immediate surgery.

Hannah, who celebrated her 19th birthday in July, has had three operations to remove the tumour and has undergone radiotherapy and chemotherapy treatment. She is currently in her second year at university training to be a primary school teacher.

Ryan’s Story

Ryan was 4 when he started having seizures. Seven months after the seizures started Ryan had an MRI scan, even though his mum Tracey had previously begged for one, and had even offered to pay for it. Each doctor Tracey saw told her Ryan couldn’t have a brain tumour because he, ‘wasn’t ill enough’. After an initial misdiagnosis of neurofibromatosis, Ryan was eventually given the diagnosis of pilomyxoid astrocytoma (a type of brain tumour) and underwent surgery and chemotherapy.