Zest for life after brush with brain tumour

Toby Cunliffe-Steel had surgery to remove a tumour the size of golf ball from his brain when he was 15.

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Toby Cunliffe-Steel was sitting in a small-town cafe in a dressing gown with an intravenous line attached to his hand when he found out a brain tumour was the cause of his constant falling over.

Aged 15, he had woken up in the ambulance carrying him from his home-city hospital in Tauranga to Starship, the national children's hospital in Auckland. "I said to her [one of the ambulance officers], 'Where am I, what's going on?'

"They said it's okay, you're in an ambulance, just relax, your parents are in a car behind us, we'll pull over and you can have a chat with them." At the Copper Kettle cafe in Ngatea, his parents explained he had a tumour.

Toby, one of the thousands of patients Starship sees each year that the Herald's Help Our Kids fundraising campaign aims to help, had known something was wrong for months. His symptoms had been steadily worsening, leading to an MRI scan at Tauranga Hospital. He had seen his mother burst into tears when a doctor spoke to his parents after the scan, but didn't hear what was said and, on pain relief, "passed out", not waking until the ambulance trip.

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His deteriorating handwriting had been the first sign. Classmates at Tauranga Boys' College couldn't read it, next his teachers, and finally Toby couldn't decipher his own scrawl.

Terrible headaches began to plague him every morning. Then he started walking into door-frames and eventually lost all coordination. Playing rugby with classmates he fell and hit his head, leaving his vision with a disturbed, rotating sensation.

"That was pretty scary so I went over to the side of the field and sat down. At first I tried to keep playing and every time I stood up I kept falling over."

A doctor put him on medication, thinking the problem was an ear infection, "but two weeks later, after I didn't improve, I went to my GP and he organised an MRI where they finally found it, and I went to Starship the next day".

Child and adolescent neurosurgery is done at the adjacent Auckland City Hospital, although the patients are cared for in Starship before and after their operations and some require other procedures at Starship's theatres as well.

Toby, who is now a sport and exercise university student and top rower with his hopes set on competing at the 2016 Olympics, was diagnosed with a tumour the size of a golfball - a haemangioblastoma - in the cerebellum, an area of the brain that controls balance, coordination and movement. The tumour was removed by surgery and no other treatment was needed.

"Fortunately they got all of it, they're pretty sure. I had started rowing and the doctors told me I was one of their fastest-recovering patients. What they put it down to was the physical condition my body was in from my rowing training."

He said having a brain tumour had changed his outlook on life. "It really hit me going through this experience and ... I decided that from then on, whatever I was going to undertake I might as well give it a hundred per cent rather than half-arsing it."

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