To think that Neon's Mum, Sally Roberts, definitely displayed Narcissistic tendencies?

[VulvaVoom]

This is for anyone who watched the documentary last night. Maybe it was edited to make her look bad but I felt really angry and sad about her behaviour and attitude.

She seemed more concerned with pursuing a court case that she knew she was never going to win instead of being with her sick son. An example of this is that she didn't see him the night before his brain surgery (even though she could have done) Surely it doesn't really matter what you believe, once the decision was made, she should have been there for him.

She also seemed to be enjoying the media attention a bit too much IMO and spoke to Neon in quite an odd way, when she wanted him to go into a bariatric chamber for some 'alternative' treatment, she asked him to 'do it for her'.

She believes that radiotherapy will affect his DNA and change him - well isn't that better than him dying ffs? The poor bloody kid.

go expat

At the start, DS would only eat Greggs sausage rolls no one would have stopped me giving him them.

I can understand, to a degree, her reluctance for him to have radiotherapy on his brain - my DMIL had it and it changed her so much. She didn't live long afterwards but DH and I will never forget how awful that was. Twice we've thought (mistakenly) that DS might need it - both times we've agonised over what we ought to do and what questions to ask etc and whether we would be doing the right thing. In the end though, we would have thrashed it out with the Doctors and made a joint decision that we could both live with. I suspect we would have gone ahead in the end. But I can understand her fear.

In our case though, thankfully, the medical choices are pretty much out of our hands. If we don't follow the Drs, the cancer will relapse and DS will die.

DS has only had radiotherapy on his tummy. Nevertheless the side effects are brutal - one of his kidneys will fail, likely within the next year or so. It stunts growth in the area treated too so, God willing he survives, he'll be kind of lop-sided. Plus increased risk of other cancers (and there's a whole load of organs there to get cancer), more digestive problems... And he only had a short course.

The night before his operation I was terrified. But we were there because he needed us. I cuddled him as the anaesthetic worked because he was scared. That's the absolute basics of what you do for your child. As expat says, whatever you feel, you suck it up for them because they need you.

Completely different and in no way comparing myself - but when I was little and in and out of hospital - all I craved was lucozade (this is the 60's and 70's when it was a real treat and in those glass bottles!) I was never allowed it as it was 'too expensive'. All the other kids, who were only in for one operation would get it and I used to feel really sad :( It's made me recklessly spend the odd £1.50 on the little bottles when I feel angry!

If cheapie things like hyperbaric oxygen chambers actually worked, do people not think the NHS would be using them? I know we are supposed to believe doctors are all in thrall to Big Pharma, but what about the politicians who write the checks? Them too?

Bottom line, people keep getting, and dying of cancer. If any of these quack treatments worked, we'd know, from all the people who used them and recovered.

And yes to any food that appeals: my father has incurable cancer and doesn't feel hungry any more. We just keep finding things that will tempt him. And if that means heading to far-off markets to get food from his homeland and courier it to him, that's what we do.

It is a huge shame that attention is focused on how bizarre Sally Roberts is rather than on the woeful treatment of childhood cancers. As queen and others have said, current treatments are incredibly harsh - they may save your life, but are gruelling at the time and may leave you with permanent problems and predisposed to future serious illnesses. Needs to be far more R&D into treatment for paediatric cancer.

That doesn't mean you reject whatever the doctors can do to save the life of your seriously ill child. But it is not as simple as 'cure v. death'. Sadly.

'But it is not as simple as 'cure v. death'. Sadly.'

True, because Neon may well die in the future of his cancer or another form of cancer resulting from the treatment or another condition resulting from the treatment.

BUT 'treating' him the way Ms Roberts was, his death would have been imminent.

Research is hard though, isn't it, because of ethical difficulties with double-blind trials (or any trials) on children?

www.thetruth365.org/cancer-facts/

'In 20 years the FDA has initially approved only one drug for any childhood cancer.'

Wishing Neon all the best.

Santana, that is because it's hard to test drugs on children.

Paed cancer also behaves differently.

For example, the mutation my child had, FLT3, is one of the more common ones in adult AML. In children it is far rarer, accounting for only 12% of paed AMLs, and confers an utterly damning prognosis, whereas the same is not true in adults. And no one can figure out why.

The answer, from all the consultants I've come to know, is genetic research as much as drugs research.

In 20 years though, expat... 20 years! It's so hard to understand with all the advances made in 20 years.

But that's just the FDA, plenty more drugs are licensed for use here and in the rest of Europe.

Believe me, I realise how far we have to go. The chemo weakened my daughter so much, her damaged organs failed. And the only option she had to survive long-term was a risky allogenic stem cell transplant.

It didn't work because of the infections she contracted.

I know of one other girl, a healthy, athletic teenager, who died of infection in the same second round my child had. She didn't even make it to transplant.

And yet another, a beautiful toddler, for whom the chemo didn't work against her AML at all. She was sent home to die, which she did last year.

And another, a much-loved only child, who died of DIPG which has seen NO treatment in decades. Only now, a doctor at Children's in Philadelphia has a trial open. But otherwise, they all die.

Paed cancer is under-funded because they aren't as vocal a group, IMO.

Have just watched the program, I am in awe of his father and I hope that he retains full time custody of both the children.

I am pro holistic treatments but not instead of life saving treatment. Yes to good food, vitamins and even weird looking oxygen chambers if you want but not at the expense of life.

Yanu, she showed some very narcisstic behaviour during the multiple tv appearances, court appearance and in the documentary.

:(

I felt very sorry for everyone in that family.

I was disappointed that she didn't have arguments in favour of alternative treatments at her fingertips. Some of the things she was doing have some evidence eg milk thistle has been shown in one study on children receiving chemo to help them with some of the side effects. There is little research done into nutritional treatments as there is unlikely to be profit in them, unlike chemotherapy agents which are very profitable for the pharmaceutical companies who fund research into them.
Hyperbaric chambers are used by divers suffering from 'the bends'. She obviously thought it was worth a try. She was trying everything she could think of to get him to go.

She was desperately trying to avoid having her son's brain "fried". That was the word the consultant had used.

I felt she was probably in denial about the seriousness of her son's condition for whatever reason.

But to run away with him.......

What a sad case.

Thank you to Expat and other who have shared their first hand experiences for us to read, best wishes to you x

I had a friend who thought along the same lines as Sally - she only ate raw food and felt that as her son was eating vegan (albeit cooked) organic food and that he had been breasfed for 6 years, that he would have immunity from illness. He didn't. In their case it was only measles though.

I think questioning the medical establishment is fine. I think questioning treatment and making sure you have all the facts (from different doctors and specialists) is important. But she was claiming to have carried out 'research' when all she had done was to be brainwashed by the ginger haired woman. It's easy to see how it had happened - she was seeking an alternative to the harsh treatments proposed for her son.

I think as time wore on she became very detached from reality - she couldn't even really explain the link between her fillings and his cancer.

The father seemed like a decent bloke - admirable that he and his sister were able to stay so calm and reasonable with her when she was the one who had caused the second operation.

www.katesmagicbubble.com/interviews/interview-with-sally-roberts-2

This is a clip of a interview Sally Roberts did and she comes across as simply a worried parent who truly believes in an alternative treatment.

www.katesmagicbubble.com/interviews/interview-with-sally-roberts-2

hope this link works

Should also have added it's uncut and unedited (not like the channel 4 programme)

Afternoon.

We have no problem (of course) with you discussing this programme and the issues it raises.

But we'd also like to remind you that, at the centre of this story, are a mum and a dad whose child has been diagnosed with a potentially fatal condition ? and, given that immensely sad and stressful situation, we don't think it's right to attack either of them for their actions or to make insulting suggestions about their possible mental state.

We've deleted some posts that fall into this category. As well as some others that are potentially defamatory.

Well said.

Duelling
You seem to forget this was not just the doctors. He had a father who also wanted him to have the treatment
I think you will find on the cases of vaccines where one parents wants to vaccinate and the other doesn't the courts have sided with the pro vaccinating parent.
From the case the mum did provide very poorly researched evidence for her case . One of the so called specialists couldn't even spell the name of the condition properly.

Apologies got threads confused. Will post on other thread