Just 1% of the national research spend has been allocated to this devastating disease
The diagnosis of a brain tumour is devastating, however there is hope. We have been fortunate to meet some very brave people who have survived to tell the tale and who want to share their story to give hope to others.
“As a parent you never expect your child to get a brain tumour, but it can happen. There are so many children out there who do not get diagnosed early enough and whose symptoms are often missed. More children die of brain tumours in the UK than from any other cancer. We think of those children and families every day and are working to support the brain tumour cause in whatever way we can.”
When our lively, loving, mischievous daughter turned two-and-a-half in 2007, we noticed that she sometimes looked a bit vacant. We weren’t unduly worried but mentioned it to our doctor who suggested it could be a form of epilepsy. She referred us to a specialist.
Over the next few weeks, Maisie began to have seizures, during which she would shake and appear to lose control. The hospital told us that Maisie’s condition was not urgent and we would be seen by a specialist in three months.
A parent’s instinct told us that something was more seriously wrong with our little girl, so we pleaded for her to be seen earlier.
A neurologist at St George’s Hospital, in south-west London, saw Maisie a few weeks later. She was diagnosed with a common form of epilepsy and given medication for the seizures. We were relieved. We had a diagnosis and could help her. We were given leaflets and information and felt better. Although we were concerned about the epilepsy, her condition wasn’t life threatening. How wrong we were.
Fortunately the neurologist suggested Maisie had a routine MRI scan (which is not always the case). We went to the appointment on a Monday morning in June expecting to be home by lunchtime. That afternoon she was admitted to a children’s neurology ward.”
Maisie had a brain tumour.
Words can’t describe the devastation we felt. The following day we were told Maisie had a tumour in the centre of her brain in an unusual position. We were in complete shock. There were no leaflets to read and we didn’t know what would happen to her. Maisie’s surgeon was amazing. He took time to explain everything and went ahead with the operation the next day – the longest day of our lives.
Maisie has recovered well. Fortunately the tumour was ‘low grade’ and because it was discovered in time it could be successfully removed by the surgery. But Maisie is still young and the effects of brain surgery are long lasting. She had a central neurocytoma, which is a rare tumour among children and because so little is known about brain tumours in general, the future is uncertain.
In 2010 we moved from London back to St Andrews in Scotland. Maisie continues to be closely monitored with regular scans at Ninewells in Dundee. We were lucky for many reasons - from having a doctor who referred Maisie immediately, to securing a neurologist’s appointment early and getting an MRI scan quickly. We found Maisie’s tumour before it was too late.
We have had amazing support from the surgeons, neurologists and hospital child psychologists both in London and now Scotland, who help us cope with the effects of Maisie’s surgery and treatment.
As a parent you never expect your child to get a brain tumour, but it can happen. There are so many children out there who do not get diagnosed early enough and whose symptoms are often missed. More children die of brain tumours in the UK than from any other cancer. We think of those children and families every day and are working to support the brain tumour cause in whatever way we can.