Woman refuses child chemo due to side effects

Dean09 wrote: »

Chemo is basically poison. I know that if I was diagnosed with cancer I'd refuse to receive chemotherapy. If rather take my chances with other treatments.

Stheno wrote: »

Linky

Can't get over this, she seems to have a view that it might be better for the child to die rather than suffer side effects, some of those that she claims (like loss of IQ sound a big OTT?)

Stheno wrote: »

Can't get over this, she seems to have a view that it might be better for the child to die rather than suffer side effects..

Every parent’s worst nightmare began for the pair last August, when Neon started suffering from severe headaches. Sally also noticed that his neck was swollen.

After going back and forth to the doctor, they finally got a hospital appointment on October 23.

The following day, Neon was given an MRI brain scan and at 4pm Mrs Roberts and her mother, Lilian, were given the news they dreaded. Neon had a medulloblastoma, an aggressive, malignant brain tumour in his cerebellum, above the neck.

Your whole world collapses in front of you,’ says Mrs Roberts. ‘I think I said: “I can’t cope.” I nearly crumbled on to the floor. But you have to cope.’

With no time to be lost, the very next day Neon was taken to the operating theatre, where he spent nine hours in surgery. His mother attempts to describe what those nine hours were like, but breaks down in tears before she can complete the story.

‘It was horrific,’ she says. ‘The emotion, the fear, it’s totally overwhelming. Words can’t explain it.’

Thankfully, the operation was a success and doctors managed to remove the entire tumour.

‘It was the best we could have hoped for,’ she says. ‘But we didn’t know for sure until another scan three weeks later that none of the tumour had been left behind. We were incredibly anxious.

‘Neon was so poorly. He was struggling to get his words out and to move about. I spent the next three weeks with him in hospital, and Ben was there, too.

‘The amazing thing was how well Neon recovered. When he left hospital he was almost back to normal.

‘The way it’s been presented, you would think Neon is desperately sick. But he is running around, really bouncy, it’s incredible.’

A few days after Neon was discharged, Mrs Roberts met a consultant at the hospital to discuss the next stage of his care. This was to be a turning point.
‘We were talking about lots of things to do with Neon’s treatment. The doctor said he would need radiotherapy across all his brain.

‘When I questioned why they couldn’t target only the area where the tumour was, he replied: “You have to fry the whole brain.”

‘He immediately said: “Oh, I shouldn’t have put it like that.” But I was horrified.’

The prospect of radiotherapy would be horrifying for any parent. Among the numerous side-effects are limb weakness, poor balance and uncontrollable shaking.

Mrs Roberts began frantically researching options for treatment and says she discovered that not all hospitals automatically give follow-up radiotherapy to patients who have had brain tumours removed.

‘Giving radiation therapy is the standard protocol following the removal of a brain tumour,’ says Mrs Roberts.

‘But the scan had shown Neon to be cancer-free and his cerebral spinal fluid was clear, which was another strong indicator that the cancer was gone.
'The way it's been presented, you would think Neon is desperately sick. But he is running around, really bouncy, it's incredible.'

‘I felt we should consider the options before we ploughed ahead with radiotherapy.

‘I didn’t feel Neon was being treated as an individual, but that the medical advice I was getting was based on a blanket policy.

‘I wanted to monitor Neon, and if there was any sign that the cancer had come back then, of course, there would be no option but to go ahead with the radiotherapy.’

Over the next two weeks, Mrs Roberts and her son’s doctors argued over his treatment. The boy’s father was sympathetic to her concerns, but on balance felt that radiotherapy was the best way to proceed.

By last week, Mrs Roberts was in a state of near panic and could not bring herself to take Neon to two scheduled hospital appointments.

In response, two NHS trusts sought an emergency order last Saturday to compel Mrs Roberts to allow Neon to undergo treatment.

Already stressed and fearful, the High Court action planted another terrifying thought in Mrs Roberts’ mind — that the authorities were going to try to take Neon away from her.

‘They wanted to take him away so they could give him the radiotherapy. I was convinced the police were going to knock on my door looking for Neon and I wasn’t going to let that happen,’ she says.

On Sunday night, Mrs Roberts packed a small bag and she and Neon left home. While he has been recovering from his treatment, Elektra has been staying with her father in London.

Mrs Roberts drove to the house of a friend in East Grinstead, who runs a centre offering a form of oxygen therapy for people who have suffered brain injuries.

‘It made sense to do something that would help Neon — oxygen therapy has been shown to help the brain heal. It’s not quackery,’ she says.

She had not told anyone where she had taken Neon — not even his father.
On Tuesday, Mrs Roberts failed to turn up at a High Court hearing set to decide Neon’s cancer treatment.

When she failed to appear at the High Court again the following day, the judge took the unusual decision of lifting reporting restrictions to improve the chances of locating the boy.

Doctors speaking at the hearing said Neon’s chances of surviving would be ‘dramatically reduced’ if he did not begin radiotherapy soon. The judge said she was ‘deeply concerned’ for the boy’s welfare.

The hunt for Neon and his mother began. By the early hours of Thursday morning — it is not known how — the police had located her at East Grinstead.

Mrs Roberts was awoken by the sound of police banging loudly on the front door, and then running upstairs and thumping on her bedroom door.

‘There were about four officers outside, shining a torch in my face. Neon was asleep, but I had to wake him and leave,’ she says.

Mrs Roberts and Neon were taken to a local hospital, where he was examined by doctors.

‘They had no idea what was going on, they were saying: “What’s wrong with him? He seems fine.” A few hours later he was discharged.’

But Mrs Roberts was not permitted to remain with her son. She was stunned to be told he was being placed in foster care. She watched powerless as two social workers, a woman and a man, left the hospital with her son.

‘The last words he said to me were: “Am I ever going to see you again, Mummy?”

‘Having him taken away was like losing my arm. I’d rather have lost a limb than go through that.

‘After everything Neon has been through, was it really necessary to put him through that as well?

‘The police wouldn’t tell me where he was being taken. The way they did all this was unbelievable. I was allowed to return to my friend’s house in East Grinstead and got straight on the phone to Ben.’

After hours of frantic calls, Mr Roberts was informed that afternoon that Neon was going to be returned to him at his home in Knightsbridge, central London.

‘Neon got back to Ben’s house at 9pm, which is far too late for a seven-year-old,’ says Mrs Roberts.

‘You have to ask whether they really have his welfare at heart. I had a short chat with him. He was OK, thankfully. But he should have been back home with his mother.’

'After everything Neon has been through, was it really necessary to put him through that as well?'

It wasn’t just Mrs Roberts who was subjected to heavy-handed police tactics.

She had spent a few days staying with a friend, Kevin Wright, whose son was treated successfully for the same type of brain tumour as Neon several years ago. His house was raided in the hunt for the missing boy.

Naturally, I was keen to get advice from Kevin, because he also refused radiotherapy for his son and the boy has recovered.

‘The police found out I’d gone to stay with him. Fifteen armed officers turned up and searched his house as a police helicopter circled overhead. That is ridiculous.’

Yesterday, Mrs Roberts spent the day at the High Court, determined, as Neon’s mother, to research all treatment options for him before making a final decision about radiotherapy.

Explaining why she went on the run, she told the court: ‘I was forced into that situation. That was the very worst thing I could possibly have done.

‘I was given no choice. I thought if I brought him to the hospital they would not let me take him home, but would proceed with the treatment.

‘I feel that if you go ahead with the radiotherapy, we are depriving him of his talents. He is more likely to be infertile — no grandchildren.’

Afterwards, she said: ‘I’m exhausted — it’s a rollercoaster, but it went as well as it could and I am hoping for the best.

‘I can’t wait to see Neon — he is everything to me. He and Elektra are my world. I want to be able to say to them that I’ve done everything in my power to do the right thing for Neon.’