You're Killing My Son C4

[difficultpickle]

Watching as I remember this news story. Rather surprised that both parents allowed a film crew to follow their son's progress and airing their views so publicly. I'm not sure I understand what they hope to gain from doing this.

Sadly, Sally Reynolds is a deluded fool. What came across in the documentary very strongly was that everything connected to her (inc. her very poorly son) was really all about her. Did you watch that diva strut into the High Court?

When this hit the press originally, we didn't see hide nor hair of the father on the TV at all, but how quick was she to "do the rounds" on Breakfast TV, Sky News and others? Appalling.

The father appears to be level-headed and lovingly motivated, and good for him. I was really heartened to see at the end that little Neon had the all clear for now and hope that he goes onto a long old life thanks to his father and the Justice system sticking up for him. He'd probably be dead already had it been down to his mother...

That horrendous ginger witch doctor needs putting down for filling up the mother's head of such total "alternative therapy" crap. I can't bear it when these unregulated and moronic fools are permitted to do/say/advise whatever they like on any medical matter without recourse. If it were possible, she should be struck off and blocked from practising for life. "Didn't know that the mother was on the run"? Send her to prison for knowingly harbouring a fugitive!

Kurri - I agree with your post. Very sad all round.

DuelingFango: you are completely wrong. Please re-watch the documentary fairly and objectively.

Sally Reynolds was unable to present any credible alternative treatment or therapy to the High Court (at all) despite being given two opportunities to do so. This statement of yours that she wanted an alternative treatment that was not available on the NHS is entirely wrong. Credibility is the key here, and I urge to read and research around what it takes for a treatment or therapy to gain "credibility" in scientific circles and eventually become an approved treatment or medicine for prescription to humans. It's a mammoth undertaking.

This family is not short on cash, and if there was something (that none of the rest of us know about), they could and quite probably would have funded it privately here or somewhere else. If you are suggesting that you think that the oxygen chamber therapy was in anyway credible and could encourage human immuno physiology to "self-heal" an incurable disease, then I'm afraid you need your head examining..... Did you see how large and quickly that brain tumor re-grew? I can assure you, as a medic, that Neon was sadly afflicted by some extremely aggressive cancer.

The only thing I do agree with you on, is that the attacks on the mother should not be personal. There is a massive weight of factual and documentary evidence on her ability to conduct herself rationally, and I'm afraid the vast majority of right thinking individuals agree that she cannot. She is clearly suggestable, gullible and naive. A prime candidate for Scientology no doubt or some other silly cult. I do feel extremely sorry for the paranoia that seems to grip her so tightly being fuelled so appallingly by the witch doctor and the salesperson featured in the documentary. I hope that one day she is able to rid herself of these vultures and develop her own rational decision making process and knowledge to make safe, educated decisions about the health and wellbeing of her children. IMHO, in her present state of mind, she's not fit as a parent.

"why can't the kid go to the cinema"?

A: coz it gives you brain tumors silly... Everybody knows that!

Reckon that leech radiation kit salesguy is related to the chap that went down a few months ago who was selling all those millions of pounds worth of fake landmine "detectors" to armies all over the world?!?

Rj I totally with you, Sally seemed very me orientated and self serving, it was her photographed in the media and on tv not the dad. She seemed to shun medical intervention in favour of the quack therapies, no mention of proton therapy, she did not want medical intervention period' the poor boy is not having a childhood, having to take all this stupid stuff that is unproven, not allowed to have a childhood like any other child his age. If I were the father I would be more forceful and would not allow her to get away with such rubbish.

To me it's the dad who seemed quite level headed and normal, treating Neon like any other little boy with treats aand fun instead of a human lab rat.

Life with mum did not seem fun, on te run to endure more quack therapy after mre quack therapy, no treats no fun, just a daily regime of pills and special juices

The court order was truly justified, the life of te little boy is more important than parent wishes, without this treatment the boy would die and Sally would have no son

Dueling you need to watch the documentary. I don't see how she can claim to be misrepresented, she was insistent that all doctors were brainwashed and wanted to refuse all conventional treatment for neon. He would be dead if she had done that.

I wonder whether the father decided to make the documentary as he wanted everything 'out in the open'.

I expect he was petrified the mum would get custody and he knew that would mean the end of conventional treatment. If everything was filmed, he had 'evidence' of the way Neon was calm and happy with his dad and family, and evidence of the mums 'unconventional behaviour'.

Yeah maybe. I did disagree with them being filmed but he clearly was better at looking after him. I wonder if neon will have a relationship with her when he is older?

"What came across in the documentary very strongly was that everything connected to her (inc. her very poorly son) was really all about her. Did you watch that diva strut into the High Court?"

I think this is an appalling thing to say. She's a diva?

You know, the programme was called 'you're killing my son' yet was made by with the co-operation of Neon's father and without the consent of his mother. Why did they put the focus onto her if it was a programme agreed to by his father? There was definite bias in the programme and that was to be nagative about Neon's mother.

I am not saying that Quack Therapies are fine, but I can see why his mother was against the treatment the NHS forced him to have.

The thing is we'll never know if he'd have died without the radiotherapy but does anyone really believe doctors would give radiotherapy to a child who didn't need it?

Aside from the 'didn't need it' thing, there is also the 'parent didn't want it - found an alternative' thing.

Yes - I absolutely agree that the people in the programme were leeches offering wacky therapies but I know from personal experience of infertility that you get to a point where you will try anything just in case it works. That's why I had a crystal round my neck, did acupuncture, drank wheatgrass, ate eggs and organic milk and wore orange while going through IVF. I still had the proven medical treatment but I did all these other things while going through it because of a 'what have I got to lose' attitude.

I just think, looking at it rationally, that this programme was something the father decided to do and was quite happy for it to be a hatchet job on his son's mother when there was no need for him to do so. The court has already decided on the treatment that has already been given and is on-going. Inviting cameras into your home to make a programme that is so obviously biased against Neon's mother and which shows your son during moments of real distress is just horrible. What is he hoping to gain? Public sympathy?

I personally think they would be better off dealing with their issues privately for the sake of their son.

'The thing is we'll never know if he'd have died without the radiotherapy but does anyone really believe doctors would give radiotherapy to a child who didn't need it?'

He would have died. That form of cancer cannot be treated with proton therapy yet, surgery cannot get all the tumour cells and it has a high chance of relapse.

I weighed in on the other thread.

I reserved judgement on this woman whilst it was going on, but after watching the show, she's a fucking nutcase.

The father and aunt deserve a metal for putting up with her shit. If I were the father I'd have moved to have her access terminated.

Her actions could have killed her son.

And yes, I have been in that situation. I know exactly what it's like. It's horrifying.

But you must put the child first and buck the fuck up for him/her.

And not see my child the night before/as they are being put under for surgery? W.T.A.F? Not unless I were unconscious.

'I just think, looking at it rationally, that this programme was something the father decided to do and was quite happy for it to be a hatchet job on his son's mother when there was no need for him to do so.'

She agreed to it. And it was her actions that made the entire case so public.

My daughter would certainly have been infertile after her treatments. Had she lived. Now, she is dead. She wanted to live.

Treating a child with such a disease is not a choice because the alternative is death.

If anyone were killing her son, it was her.

"If anyone were killing her son, it was her."

no - I think you will find it was the Cancer.

' If there were available and proven therapies available in the US then I don't understand why Sally didn't give that evidence at the court hearing.'

There are not for that type of cancer. Several children who were treated alongside my daughter had that form of brain cancer. It's surgery, chemo and radiotherapy for the present. Everywhere. It has a high relapse risk without it. Even with all that, about 30% of children with it will die.

And when they are hungry, you feed them whatever the hell they want, whenever they want it.

This woman was brainwashed and preyed upon by charlatans.

'"If anyone were killing her son, it was her."

no - I think you will find it was the Cancer.'

Um, no, I think you'll find that if you delay treatment in that form, you allow death to become a certainty.

It is aggressive and has a high relapse risk. ANY delays in surgery, well, if you had actually watched the show, the tumour grew quickly post the first op and he needed a second resection within weeks whilst she dithered around with the courts.

The NHS can and does regularly fund children to receive proton beam therapy in the US (usually in Oklahoma and Florida) in cases where it is shown to be effective and/or the child is too young for radiotherapy (usually under age 4). We knew a couple of children who went. They hope to have a centre offering it to children set up by 2017 here in the UK.

It is not an effective therapy for that form of brain cancer even in the US.

I wanted to run away with my daughter after her 4th round of chemo. She was so, bar the Hickman line, NG tube and bald head, well.

But her form of leukaemia was not curable with chemo. This was well-known and established. The only way to try to save her life was to try the risky allogenic stem-cell transplant.

She died of secondary infection/pneumonia less than 2 months later.

BUT, had we not tried it, she would have had zero chance of long-term survival.

So I understand, what a horrible decision this is. DD1 had far, far less of a chance of long-term survival even with successful stem cell transplant than little Neon, so the urge to just run off was strong.

But you have have to try the best you can and put aside your fear and pain for that child. And be the bigger person.

Obviously I don't know much about this kind of cancer and the treatment involved.

is she (the mum) lying when she says that after 2 operations the scans show that he has no cancer?

I think from what was said last night that after the 2 operation the tumour had been removed but treatement was still needed to ensure all the cancer was gone. It also seemed the second operation was caused because she took him away meaning the tumour grew back - although that could have just been the way it was edited, thankfully its not a topic I know a lot about.

You do realise it is not possible to see or resect every single tumour cell during surgery? So the scan can be clear, but chemo and radiation are to take out the tumour cells that neither the surgeon now the scan can detect. That's why they do it, not to damage their DNA or for kicks or because they have a God complex, but to try to kill the cancer before it kills the child.

He was clear after the first resection. They wanted to start treatment within 4-6 weeks because yes, the cancer really can take off in that short a time. And it did. So he needed a second resection.

Another example, my child had a rare form of acute myeloid leukaemia.

After one round of 8-day, completely inpatient chemo via a central line, her bone marrow went from 60-3% leukaemia. That is morphological remission. Yes, with 3% leukaemia. Further genetics testing revealed that within that 3%, she still carried an extremely dangerous and deadly mutation (FLT3). Without further chemo, this cancer would beyond a doubt very quickly hijacked her bone marrow and CNS and killed her within weeks. There could be no delays. As soon as her counts rose enough, we had to fire in more chemo.

When there is no viable 'alternative' treatment you must treat as you can or your child will die.

Yes, they may die as a result of the treatment, mine did, but that doesn't mean you take them to quacks instead and expect to find any sympathy.

Ah right, Not sure where I saw/read it but I was under the impression that the second OP just found scar tissue and no tumor.