Brave Kate
Parents remember the daughter they lost to cancer
Kate Mehigan was nine when she was first diagnosed with a brain tumour. She endured a punishing course of treatment that lasted more than a year, but recovered and wrote a book, My Story, about her experience.
This had an incredibly uplifting effect on people who read it.
She wrote it, she said, “Because I was really scared before I started the treatment. I hope it helps other people to realise it’s not as scary as they think. I want the whole world to know that I’ve got through this. So you can do it too! Just hold on in there!”
Kate’s family presented a copy to the charity that had done so much to support them. And somebody at CLIC Sargent passed it on to the charity’s patron, Cherie Blair – which is how, to Kate’s great surprise, she was invited to 10 Downing Street, in 2004, for the 50th birthday celebrations of the then prime minister’s wife.
Every day, ten children and young people are diagnosed with cancer. Thirty years ago, only three in ten survived. Today, it’s more like seven out of ten, and there are more than 40,000 childhood cancer survivors in the UK.
But survival often comes at a price, leaving individuals with long-term medical problems, and massive gaps in their education.
For that reason, CLIC Sargent, the country’s largest child cancer charity, recently launched a National Cancer Survivorship Initiative. My Story could become an invaluable resource in that campaign, as could other books, such as Henry Tumour, a novel by Anthony McGowan, which won last year’s BookTrust Teenage Award, or Before I Die, by Jenny Downham, which was published to great acclaim this year.
But Kate Mehigan will not be involved.
Earlier this year – four and a half years after her original diagnosis, and six weeks after a routine scan showed she was tumour-free – the 14-year-old had a violent seizure in front of her classmates. She was rushed to hospital, where doctors found a new, more aggressive tumour that could not be removed cleanly. In October, she fell into a coma and she died a month later. Her funeral took place on 29 November.
Speaking this week, at the start of Childhood Cancer Awareness Month, Mrs Blair paid tribute to Kate. “She 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.”
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 this 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 couldn’t draw. Instead, she made collages by stapling old crisp packets together – and these remain among the many items that keep a strong sense of Kate’s presence in the cheerful room.
We talked first about Kate as a young child. “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.”
Kate certainly did that, Mike added. The couple smiled and laughed as they recalled a variety of episodes from her earliest childhood, involving ballet classes, performing in a school play, and covering herself with paint.
By the time Kate was nine, she had never really been ill. Her attendance at school was exemplary. So when she kept throwing up her parents took her to the GP. When the sickness re-occurred, the GP referred them for tests.
Arriving at the hospital, Kate was sick again. Doctors looked into her eyes and decided she needed a scan. She was taken to a specialist hospital on the other side of the city – Bristol, where they lived at the time – in an ambulance with its blue lights flashing.
After examining the results, the following morning, a consultant told her parents Kate had a tumour. She went into surgery for six hours.
When that finished, they were confronted by the sight of their beautiful, sweet-natured and confident daughter, covered in tubes and bleeding, punching a nurse, cursing, and generally throwing herself about.
“They had warned us that surgery in the areas where the tumour was located could cause patients to be violent afterwards,” says Lesley.
They were grateful for the warning, but it wasn’t enough to prepare them for what they saw. “It was frightening,” said Leslie. It was a side of her they’d not seen before.
“When you have a healthy child of nine who has not had anything wrong with her before,” she added, “it comes like a bolt from the blue. I didn’t know anyone else who had gone through this.”
Less than 48 hours earlier, they had left the family home under the impression that Kate had some kind of stomach bug. Now their lives had been turned upside down. Certainly, when Lesley 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.
Kate’s violent outburst didn’t last long. But it was replaced by a weakening of her entire left side, and total facial paralysis. This rendered her incapable of eating without a tube, or speaking, or even registering an emotional response to the information, necessarily alarming, that her parents and the medics gave her about the treatment that lay ahead.
It was only much later that Kate was able to describe what she went through. “When I first found out that I had got this I was really shocked, shaken up and I had no idea what was coming. I could hear a voice in my head but no sounds came out. I was very scared because I couldn’t speak to ask any questions.”
The doctors proposed a 59-week course of treatment. “We’d never even planned our holidays that far in advance,” said Lesley.
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 else was allowed in the room with her.
In case you have forgotten: she was just nine years old.
Her parents watched every session avidly on monitors, though 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.’”
On Lesley’s 40th birthday, Kate still wasn’t speaking but they all sat together on her hospital bed to unwrap the presents. As Kate later remembered: “I wasn’t supposed to eat 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!”
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, it had nearly all gone, apart from a few strands near her ears.
Mike and Lesley took photos all the way through. “It might seem cruel, taking photos of a sick child,” said Mike, “but showing the pictures to her afterwards made it so much easier to explain what was going on.”
Indeed, after the worst was over Kate would go through the photographs with them, and one day Lesley decided to write down what Kate had to say about them. The result of that collaboration was the book that ultimately found its way to Cherie Blair.
Not all the photos made their way into My Story. One that Lesley showed me pictures Kate sitting up in the bath, with the family cat looking on. Every one of the girl’s ribs is perfectly defined. The picture looks like evidence of some war crime, or natural disaster. “She was emaciated,” Lesley said. “There’s no other word for it.”
As well as reducing her appetite, 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,” says Lesley. “So she had to take three lots of hormone replacement every day.
Kate wrote: “When I get tired I look at the TV but my eyelids close even though I want to watch it. When I look at a book all the words move around in my vision. I feel I want to get glasses because this hurts my eyes so much. My hearing is going a bit and that won’t come back. When the chemo makes my blood count go down I have to have a blood transfusion.” Altogether, she had nine transfusions.
Of course, she wasn’t the only person to suffer. Her parents were warned in the earliest stages that childhood cancer tears families apart. Some couples disagree about what should be done, or blame each other. One person might get knotted up with questions – “Why us?” “What could we have done to prevent it?” – becoming embittered and difficult, while the other struggles to remain positive.
The Mehigans took care always to talk to each other about what troubled them, and seem uncommonly good at avoiding those unanswerable questions that put iron in the soul.
“I take it as a compliment that you say we look like we are dealing with it well,” Lesley said to me. “When you have a child who is so seriously ill, it’s easy to be so focused on the child that you forget about each other. But you do sometimes need to stop and make time for each other. We would not have got through this if we didn’t have each other.
“But of course there are times when we can’t cope so well. And it’s obvious that when you wake up in the morning and you feel awful about things you take it out on the person who is nearest.”
Mike says the difficult times included trying to arrive on time for hospital appointments and finding nowhere to park: in the circumstances, even that kind of banal, everyday stress can cause tensions to bubble up uncontrollably.
Cancer patients and their families frequently talk about five years as a kind of magical period, beyond which – if the cancer hasn’t reappeared – the patient has recovered. This is not true, but it’s a common enough idea, and offers great comfort.
Early this year Kate passed four and a half years, and the family started to plan for the longer term.
Kate went on trips, with school and with relatives, involving vigorous activity. Pictures in My Story show that she enjoyed herself.
Lesley decided to find a new job. She chose to do something quite different – to work as teaching assistant with special-needs children, on about a quarter of her old salary. “I wanted to do something that makes a real difference to people,” she explained.
But less than six weeks after a routine scan had given Kate the all-clear, just before the summer holidays, she had a seizure in class, and another in the ambulance that took her to hospital.
This time the scans showed that surgery would be considerably more hazardous. “What really got me was the consent form,” says Mike. “They talked about this being life threatening, and that being life threatening. And even if it worked she might not be able to eat or talk, ever. They pass you the pen and it’s devastating. You are taking decisions for someone else. You are giving permission for life-threatening surgery on your daughter. And if it was to go wrong you know the effects will be really severe.”
Nevertheless they consented to the operation, which lasted for 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 doctor told them he’d been unable to remove all of the tumour, which had taken over key areas of the brain. They faced a horrific choice, all too familiar to the families of cancer victims: to prolong life or improve the quality of the time that remained.
“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 weeks, or months she had left.”
They chose quality of life rather than quantity.
Rather than have Kate fitted with a permanent tube for chemo, as she had been in her first bout with cancer, they opted for tablets. This meant that she could go swimming and take baths. In the event she was too ill to do that most of the time. But CLIC Sargent arranged for the family to stay for a weekend in a cottage with a swimming pool, and she was able to swim after all. “It was fantastic,” said Mike.
He quit his job to spend valuable time as Kate’s primary carer for her last weeks at home. “I didn’t know how important that shared period would be, but I got very close to Kate.”
He took her to a nearby National Trust property, and to the seaside.
“At this stage I would be carrying her to her chair, but sometimes I would look round and find her groping along a wall, saying, ‘I will do it myself.’”
One day, as a memento for cousins and friends, they made a print of Kate’s palm alongside her sister Claire’s. A framed copy stands in the sitting room. The difference in size between the sisters who were so close in age shows clearly how much Kate’s natural growth was slowed by her treatment.
In September, her sickness worsened. 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 the cancer was terminal. “She did understand how ill she was,” said Lesley. “But things happened so fast at the end, we never told her.”
“You knew that she knew what was going on,” says Mike. “At meetings with consultants they had described the tumour as aggressive. They never said it would take her life, but I think she understood that.”
Mike was brought up a Catholic – like his daughters – and says the faith did provide a comfort to some members of the family. “In the early days, it probably was a comfort to me, too. But then I got to the state of thinking, why are we going through this? How would somebody allow this to happen? I didn’t think there was as much solace as other people have found in religion.”
The thing that gave them strength, they agree, was the amazing support they had from other people – family, friends, doctors and nurses and CLIC Sargent.
From the start, the charity provided social work supporters to discuss the diagnosis and its implications, and explain how to claim financial benefits, community nurses to visit them at home, saving endless trips to hospital, and youth support workers to help reintegrate Kate at school.
At Kate’s funeral, classmates presented messages and letters for the family to put into Kate’s coffin. Even this was largely down to CLIC Sargent, which sent a nurse into the school to ensure that classmates who may have watched Kate’s seizure, and learned about her death, were able to discuss how that affected them.
The help has not finished now that Kate has died: the charity has indicated that it will be there for the family for another two years, and will actively keep in touch rather than wait to hear from them.
It’s almost impossible to overstate their gratitude towards the people who helped them.
“That is what gave me strength,” said Mike. “There were so many people trying to give you back your kid. You put your trust in all these fantastic people. How courageous was that surgeon to do the 13 hour operation? It would have been easier to just say, ‘Sorry, we can’t do anything.’ You read so much in the papers about the bad things that happen in hospitals, with targets and so on. You hear nothing about the great work that individuals do. And it wasn’t just one or two, it was the whole team.”
For all the help they got, it’s a testament to the Mehigan parents themselves that they can talk to me about their lost daughter so calmly and cheerfully. They have the most extraordinary, shared determination to look on the bright side – as the poem read by one of Kate’s cousins at the funeral put it, to be thankful that she was alive, rather than sorry that she’s alive no longer.
Only towards the end of the three hours I’m with them does Lesley shed tears – but it’s entirely in character that she does so to express gratitude, rather than (entirely justifiable) self pity.
“I have to say that the Co-operative funeral director was just wonderful,” she says brightly, before suddenly starting to weep. “He was so sensitive. He just listened. He said that before anything else he wanted to hear about Kate. He wanted to know what she was like.” And the tears just pour down her cheeks.
16 December 07