Patient story: "We found Maisie’s tumour before it was too late."

Maisie Dury was diagnosed with a brain tumour when she was just two years old. Her parents, Vanessa and Ollie, describe their experience of Maisies diagnosis, treatment and recovery.

"When our lively, loving, mischievous daughter turned two-and-a-half in 2007, we noticed that she sometimes looked a bit vacant. We werent 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 Maisies condition was not urgent and we would be seen by a specialist in three months.

"A parents 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 Georges 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 wasnt life-threatening. How wrong we were.

"Fortunately, the neurologist suggested that Maisie had a routine MRI scan (which is not always the case). We went to the appointment on a Monday morning in June 2007 expecting to be home by lunchtime. That afternoon she was admitted to a childrens neurology ward."

Maisie had a brain tumour.

"Words cant describe the devastation we felt. The following day we were told Maisie had a tumour in the centre of her brain an unusual position. We were in complete shock. There were no leaflets to read and we didnt know what would happen to her. Maisies 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.

"Maisie continues to be closely monitored with regular scans. But we were lucky for many reasons from having a doctor who referred Maisie immediately, to securing a neurologists appointment early and getting an MRI scan quickly. We found Maisies tumour before it was too late.

"We also had amazing support from the surgeons, neurologists and hospital child psychologists who help us cope with the effects of Maisies 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."

This case history was provided by Brain Tumour Research.

Content supplied by the NHS Website

Medically Reviewed by a doctor on 15 Apr 2015