Kate Mehigan was nine when she was diagnosed with a brain tumour. It must have seemed a bit of an adventure, racing to hospital in an ambulance with flashing lights. Like any child of that age she had no idea of the implications.

It was the start of a punishing course of treatment that lasted more than a year involving two operations, 32 sessions of radiotherapy and a course of chemotherapy that saw her lose her hair and grow so weak that “I found it difficult to walk upstairs”.

It’s not such an uncommon experience. Every day 10 children and young people are diagnosed with cancer but, unlike with adults, we know little of how they cope. Kate may change that: while she was undergoing treatment she wrote a book, My Story (you can read an extract on this page).

Her courage and good humour had an uplifting effect on everyone who read it and Kate’s family presented a copy to CLIC, the children’s cancer charity which had helped to support them. Its patron, Cherie Blair, read it and invited Kate to Downing Street in 2004 to join her in her 50th birthday celebrations. Speaking last week, at the start of Childhood Cancer Awareness Month, Blair said: “Kate was determined not to let her illness rule her and to make the most of every moment she had. It is an overused word, but Kate really was an inspiration.”

Earlier this year – 4½ years after the original diagnosis and six weeks after a routine scan had showed she was tumour-free – the 14-year-old had a violent seizure in front of her classmates. In hospital, doctors found a new, more aggressive tumour that could not be removed cleanly. In October Kate fell into a coma and died a month later. Her parents now hope that her book will be published.

The second child of Mike and Lesley Mehigan, Kate was born just 20 months after her sister Claire. She was always busy, her parents told me when I met them last week at their modern, detached house on the outskirts of Exeter. We sat round the table where Kate had spent her last weeks making art. Her fine motor skills had gone by then so she could not draw.

Instead she made collages by stapling old crisp packets together, and these remain among the many items that keep a strong sense of her presence.

“I always wanted my children to be confident and to try things,” said Lesley, “to try their best and to take an opportunity when it’s offered.” She and Mike laughed often as they recalled Kate’s earliest childhood.

By the time Kate was nine she had never really been ill, so when she kept throwing up her parents took her to the GP. When the sickness reoccurred, the GP referred her for tests. Arriving at the hospital, Kate was sick again. Doctors looked into her eyes and decided she needed a scan. The following morning a consultant told her parents that Kate had a tumour. She went into surgery for six hours.

The doctors proposed a 59-week course of treatment. “We’d never even planned our holidays that far in advance,” said Lesley, who had left the office, where she ran a sizeable IT department, to accompany Kate to hospital. She had no idea that she would never return to that office.

For the radiotherapy Kate had to lie face down, motionless, for 45 minutes. Her back was tattooed with spots so that the radiographers could be sure to hit the same points each time with the lasers. Her head was strapped into a mask that was clamped tightly in place on the bed. Nobody was allowed in the room with her.

In case you have forgotten, she was just nine years old. Her parents watched every session on monitors, although nothing at all seemed to be happening. “She did that 32 times,” said Lesley proudly. “Never once did she say, ‘I’m not going back in there’.”

She returned home in time for Christmas. Soon after, her father went to wake her and found great clumps of hair on her pillow. In three days nearly all her hair had gone, apart from a few strands near her ears.

The treatment damaged Kate’s ability to balance, diminished her hearing, caused one of her eyes to roll and affected her pituitary gland. “That affected her growth,” said Lesley. “So she had to take three lots of hormone replacement every day.”

Cancer patients and their families frequently talk about five years as a kind of magical period, beyond which – if the cancer has not reappeared – the patient has recovered. This is not true, but it’s a common idea and offers great comfort. Early this year Kate passed 4½ years and the family started to plan for the longer term. She went on trips, with school and with relatives, involving vigorous activity. Pictures in My Story show that she enjoyed herself.

Less than six weeks after a routine scan had given Kate the all-clear, just before the summer holidays, she had her big seizure. This time the scans showed that surgery would be considerably more hazardous and the operation took 13 hours.

“We kept getting calls telling us it was going to be a bit longer,” said Mike. “When we were eventually called in to see the doctor I had this awful feeling that we were going to be told she hadn’t survived.”

She had survived, but the doctors had been unable to remove all of the tumour, which had taken over key areas of the brain. “We were told there was no protocol for this kind of tumour,” said Mike. “She could do trials, but they might have put her through hell. The alternative was to give her a better quality of life for the days or months she had left.”

They chose quality of life rather than quantity. The family went away for a weekend and stayed in a cottage with a pool, where Kate could swim. Mike quit his job to spend time with her. In October she slipped into a coma. “The doctors told us to gather the family together,” Mike remembered, “because it would be her last night.”

But she came through and lived on for a month. Towards the end she came out of her coma sufficiently to grip their hands and smile. They never told her that the cancer was terminal. “She did understand how ill she was,” said Lesley, “but things happened so fast at the end that we never told her.”

Hospital diary

It all started off in November 2002 when I went into hospital for a check-up because I kept being sick and they found a lump in my brain. The next day I went to the Operating Theatre. There they injected me with Penguin Milk!! That’s an anaesthetic which is a medicine to make you go to sleep and it feels icy cold going in. When it starts to work it feels like I’m flying away somewhere as I drift to sleep. Mum says I was in surgery for over 6 hours!

One morning I woke up and Daddy asked me a question, I went to speak to him and nothing came out. I could hear my voice in my head but no sounds came out. It was a reaction to the operation called Post Fosser Syndrome [posterior fossa syndrome]. It meant I couldn’t talk, eat, swallow or even smile and my left leg and arm were weak.

My class made a big card with pictures and jokes from everyone to make me feel happy, when I opened it a big frog’s head was in the middle.

The pathologists found that my tumour was cancer, all I can say is that I’m glad they found out then and it was not too late to stop the tumour.

Before my radiotherapy I had to have a mask made. I had to lie down on a bed and keep my head very still. They mixed up some stuff that looked like a pink face pack!

They put cream on my eyebrows so they didn’t pull them out! They used a plastic knife and spread the pink stuff all over my face, it felt freezing to my skin.

By now it was the end of November [2002] and that means it’s my Mum’s birthday! Mummy had all her presents to unwrap on the bed next to me. After all the presents Mummy cut her cake, I wasn’t supposed to eat then because I still couldn’t swallow properly, but because it was a special day Mummy asked me if I wanted a piece of cake or icing. Mummy thought I was going to point but I said “Cake”, it didn’t feel like my own voice because it came out so croaky. Everyone stopped talking and stared at me and said “Was that you?” Mum thought that was her best present!

To read more of Kate’s book go to www.timesonline.co.uk/alphamummy

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