Whose life is it anyway? The cancer girl who's had enough of treatment

The side-effects of the highest grade chemotherapy and radiotherapy her body could tolerate, plus the after-effects of traumatic surgery, had left her shattered.

Her weight had dropped by 9lb, her hair was and her skin was cracked and black around the right side of her stomach from the side-effects of five-times-a-week radiotherapy.

"Leah Beth was being fed through a gastric nasal tube and couldn't walk more than two steps without keeling over with exhaustion," says her mother Kathryn, 36, a housewife. Five weeks earlier, she had been discharged after 24 weeks in hospital.

"Because of the strength of the chemotherapy, she had been nursed in isolation," says Kathryn. "She had become doubly incontinent and was often too weak to lift her head to vomit. Passing faeces was painful, and she had constant mouth sores.

"I remember her asking us if she was going to die and when we said 'No, of course not', she would say 'I feel better now', pick herself up and get on with having the next painful treatment."

But now, with three radiation treatments left to go, even Leah Beth has cracked. "I know my daughter and realise she would not give up the fight lightly," says Kathryn. "So when she looked me in the eye and begged me, with tears flooding down her face, to end her treatment and give her some peace, I knew I had to abide by her decision.

"She knew that giving up treatment would mean her life expectancy would be much shorter, but she had got to the point where she didn't think it was worth carrying on.

"We had to make a choice between quality and quantity of life, and if we had a few special months rather than a couple of miserable years then that was what she wanted. I made her a promise she would not have to go back to hospital."

But, having made that impossible choice, Kathryn discovered she was not able to honour her promise. She called the hospital and asked to speak to Leah Beth's paediatric oncologist.

"I explained that she had suffered enough and, as her mother, I was determined to support her. I wanted to halt the last few treatments of radiotherapy," says Kathryn. "I don't know what I expected - perhaps attempts to try to make me change my mind or agreement to a postponement of the treatment."

But, instead, the consultant said: "If that's your attitude, we'll get Child Protection Services involved."

Kathryn says: "I burst into tears, shaking with anger and fear. I had nursed my child through three bouts of cancer. I sat by her bed night and day for seven months, doing the job of the nurses. The doctors used to check with me about her drug dosages and they trusted us to be in charge of her isolation unit.

"Leah Beth was capable of making up her own mind about her treatment. She knows all about her illness - she used to correct the nurses if they got her drugs muddled up and knew all the medical jargon.

"But as a mother, I had no real rights over my daughter's treatment. And as a child, Leah Beth had no rights at all."

Medical guidelines say this is not quite the case. Although traditionally children under 16 have not been considered competent to make their own medical decisions, their parents, acting for them, have the right to withdraw consent for treatment any time.

But, if doctors feel the treatment is in the child's best interest, no matter what the child or parent wants, they can simply - as Leah Beth's consultant so abruptly said - involve Child Protection Services and instigate court proceedings.

"As an adult, you have the absolute right to refuse consent to any treatment," says Michael Keegan, policy adviser on the General Medical Council Standards and Ethics team.

"Children, especially if they're young, are presumed not to be competent enough to make these decisions. This is why you ask the parents to sign their consent form. It is always acting in the best interests of the child. But if parental consent is withdrawn, the doctors can - and do - involve the courts."

The Richards's nightmare began in December 2000 when Leah Beth suddenly developed a swollen tummy. "Within a week, she looked like a famine victim", says her father Mark, 51, a security consultant.

"On December 21, we took her to our GP, who sent us straight to the Royal GLamorgan hospital for a scan. We ended up in A&E and were told to take her immediately to Llandough, the oncology unit at the University Hospital in Cardiff. It wasn't until we walked into the ward and saw all the photos of former patients with bald heads that I realised we were in trouble.

"Showing us the scan, the radiologist pointed to a large mass attached to her left kidney." Then the oncologist explained that Leah Beth was suffering from a very rare form of childhood kidney cancer called Wilms tumour.

Fewer than 70 children a year in Britain are diagnosed with it. The cause is unknown, and the survival rate for a first episode is around 85 per cent.

"They estimated the tumour already weighed about 5lb and was growing rapidly," says Mark. "We were told Leah Beth would need chemotherapy to shrink it before it was surgically removed. They sent us home for Christmas, asking us to come back in January to begin her treatment as an inpatient.

"That month, Leah Beth had the first of her fortnightly doses of two chemotherapy drugs, Vincristine and Actinomycin. Within days, our once lively toddler lay there, sick and wizened like an old woman. She had to wear nappies again and, unable to eat, was fitted with a gastric tube."

Despite the awful side-effects, Kathryn and Mark supported the treatment. In April, the tumour was successfully removed. The surgeon had to remove Leah Beth's left kidney, but said he was confident that the tumour had not spread.

"Three weeks later, she was home. She went back to the hospital for ultrasound scans and blood tests, but as she became stronger we dared to hope she was truly in remission," says Mark.

Ten months after her discharge, Kathryn put Leah Beth in the bath and noticed her stomach was swelling again. Within a few hours, the little girl was lying in the ultrasound department.

The tell-tale signs of the tumour came into view on the screen. This time it was more aggressive and her prognosis was not so good.

The chemotherapy dosage was much higher and Leah Beth was very sick. And while the second operation was a success, this time, as well as follow-up chemotherapy, she was given four weeks of radiotherapy. It had to be focused on an area which included her ovaries and womb, which means she will never be able to conceive a child. Doctors said it had also damaged a section of her heart.

But the treatment seemed to have worked. For three years and nine months, she was in remission.

She put weight back on and her hair grew back. With the permission of the hospital, Mark felt confident about taking his family on holiday.

"The first week in Spain was idyllic," he says. "But on the middle Sunday, Kathryn and I were sitting watching the children. Leah Beth was wearing a bikini and suddenly Kathryn turned to me with panic in her eyes. "Mark, look at her stomach," she said.

One of the characteristics of Wilms tumour is that it can grow back overnight. "I didn't say a word. I just ran back into the villa, where I vomited and sobbed," says Mark. He drove Leah Beth to the nearest children's hospital.

"This time, the swelling was on the right-hand side, but there was no doubt what it was. As the tumour showed up on the screen, the radiologist looked over at me and I said: "You don't have to tell me." Leah Beth cried, then I did, and even the doctor had tears in his eyes.

"Back at UCH, the doctors put her on a very strong form of chemotherapy called ICE, a combination of three drugs, ifosfamide, carboplatin and etoposide, which basically kill everything.

"We were told this was a lastresort treatment that could be given just once to children or adults when the cancer was proving particularly aggressive."

But it also destroys the immune system, he says. Within a few days of the treatment starting, Leah Beth experienced shocking sideeffects: nausea, hair loss, loss of appetite and extreme fatigue.

"She was as close to death as she could be," says Mark. Leah Beth was being fed through a drip and was on anti-sickness drugs and morphine. At one point, she became so ill the chemo dose had to be halved until she was strong enough to continue with the full dose.

After four weeks of chemotherapy and several weeks recovering in isolation, on August 4, the day after her eighth birthday, the remaining tumour was removed by a surgeon. In October, Leah Beth was allowed home. As an outpatient, she was then to start a course of high-dose radiotherapy to mop up any undetected cancerous cells lurking in her body.

"She had only three doses left when she decided she couldn't face any more. We were amazed to find that the law was not on our side," says Kathryn.

As the law stands, children have no right to refuse medical treatment deemed to be in their best interest. However, as Michael Keegan points out, there are some exceptions.

"There was a case a few years ago where a child refused a heart and lung transplant against the wishes of her doctors and parents, and the court agreed with her," he says.

Kathryn rang Mark, who decided to speak to the consultant radiologist directly. "The radiologist told me the radiotherapy had been carefully calculated and to miss the last three doses could be costly in terms of Leah Beth's life expectancy," says Mark. That, coupled with the threat of child protection, was enough for Mark.

Despite his wife's pleadings and daughter's tears, two days later he took Leah Beth back to hospital for radiotherapy.

When Mark and his daughter reached the hospital, events took what he calls a 'suspicious turn'.

"As soon as I got there, the oncologist came up to me," he says. "She said Leah Beth was underweight and had to be re-admitted. "I think this was the doctor's way of keeping her in hospital so, if necessary, the hospital could carry out the treatment against her wishes. It was also a way of making sure we understood exactly who was the boss.

"As always, I took Leah Beth up to the radiotherapy department for treatment. Usually, once it was over, I'd take her for a walk. This time, a nurse told me I had to take her straight back to the ward. I felt as if she was a prisoner."

Throughout her final three treatments, Leah Beth was quiet and compliant. But a few days later, she turned on her father. "She said she would never trust me again," says Mark, with tears in his eyes. "Now, she won't even let me take her to the dentist."

Leah Beth's anger has not diminished. "I didn't want to have the treatment and I felt someone should have listened to me," she says, quietly.

"I feel guilty and angry with myself for not standing up to the doctors," says Mark. Today, a few months on, Leah Beth is back at school and though she gets tired easily, is enjoying life again.

Only time will tell if that last bout of radiotherapy was successful in preventing a recurrence of yet another tumour. There is a strong chance another will appear.

If that happens, because she has already had the strongest chemotherapy possible, Leah Beth will be offered only palliative care to ease her pain - and her parents are now united in their determination that their daughter will decide what treatment she receives.

They know they may still face fierce opposition from the doctors, but there may be some future help for parents in their position.

According to Michael Keegan, new General Medical Council guidelines due to be published in September should help resolve the dilemma.

"e have been aware for some time that doctors need guidance in this area," he says. "We have to work within the framework of the law, but I can say we will be advising doctors to negotiate with the children to resolve issues over consent.

"We feel that keeping the child up to date at all times will help them to be more accepting and aware of why they need to have sometimes unpleasant treatment."

They is a wise sentiment, but one that Mark treats with suspicion. "Who really has the rights over a child's treatment? The child, the parent or the hospital? It's the hospital every time.

"But the next time they try to force my child to have a treatment against her wishes, they will have a battle on their hands. I will go to prison for her if necessary."