AIBU That Mumsnet won't allow any discussion on the Sally Roberts case?

[Zealey]

There's something about her that is media hungry - if she hasn't sold her story to a tabloid or glossy mag in the next week then I'll take it back. But more importantly, WHY is Mumsnet towers deleting any threads discussing the case?

MrsDeVereFri 21-Dec-12 21:00:56

I would not be overly concerned with a few IQ points either. Or physical disabilities etc.

I wouldn't judge parents for pursuing a cure right till the very, very end.
I will not judge parents for saying 'no more'.

I do not think anyone else should either.

^ This. Just this.

A terrible dilema for Sally - all Moms will agree, but........
She should surely accept the medical specialists advice - fringe medicine is NOT for the seriously ill.

Also - who is paying for her continued and persistent High Court appeals I wonder? It may be her, but I suspect it is.....yes - you guessed it - all of us.

My view is that the High court should have warned her that if she withheld consent and the child died she would be held personally accountable for neglect or whatever. That might have sharpened her mind to agree with the medical specialists.
This is surely not appropreate use of our judiciary.

On the contrary, this is an entirely appropriate use of the judiciary - to adjudicate between disputing parties

"sharpen her mind"? Do you think she is dim, or just not paying attention? FGS.

Mrs DV has said all that needs to be said on this. If somebody who has been through it is saying it is impossible to judge, then what makes you think you know better?

I have recently worked with a charity called kidsncancer.org who specialise in sending kids to Florida for proton therapy as an alternative to radiation. I got in touch with Sally Roberts' legal team to see if they could see if neon was a suitable candidate for this treatment- it may be an avenue that would save him- the treatment is incredible with very high success rate and less evasive (details on their website) but she sacked her legal team the day after so I don't know if the information was communicated. If any of the mumsnet team have press contacts that could ask them to speak to the charity it would be appreciated!

AHEM

I wish Neon and his parents all the luck in the world. I do think it is sad and rather odd that his mother has chosen to sell her story to a paper. From what I understand of the story a lack of money is not an issue here.

IWishIWasSheRa why don't you contact Neon's father's legal team? According to reports I've read he has agreed to radiotherapy but has reservations about the treatment.

Off at a tangent but I do hate it when the media refer to him as 'tumour boy' or 'cancer boy' in headlines.So disrespectful

Worth a try! They won't be available til Monday As I'd have to go through the offices but will try.I expect they have had an influx of 'alternative' treatment options from wellwishers and as far as I am aware this is the only 'medical' alternative.

The news named his lawyer as Gwen Williams. The Law Soc has her listed as a partner at Goodman Ray

I forgot my point there- to add, it may be better coming from some one more reputable rather than me as 'joe public' along with lots of others who I'm sure have got in touch about a treatment they think is a miracle - I bet they are sick of people saying hemp oil cured their relative etc...

Thanks bisjo

What awfully hard decisions parents of ill children have to face. It's a horrible situation for all involved.

Sent them an email but if anyone has a better avenue please spread the word about kidsncancer.org

I've been here and will try to keep this as factual as I can.

My DS was diagnosed with medulloblastoma when he was 8 years old in 1995. He was very ill by the time we got the diagnosis. It is actually 17 years today since we were told he had brain cancer. 17 years ago we were sat by his bed scared out of our wits wondering what the hell was going to happen to our beautiful little boy.

He had neurosurgery where they removed 99% of the tumour and we were asked to put him into a medical trial where he might get chemo as well as the standard treatment of radiotherapy. Back then chemo was not a standard treatment for brain tumours. DS was selected to just have radiotherapy and no chemo.

We were warned about all the potential side effects of radiotherapy - short term memory problems, IQ issues, learning difficulties, growth problems etc but we felt we had no choice. We wanted DS to live more than anything.

He had 33 days of radiotherapy to his head and spine. He was very sick and had to take anti sickness tablets. He lost all his hair and couldn't go out in the sun without Factor 50 cream on for about 5 years. He also suffered from short term memory loss and some odd forms of dyslexia and dyscalcula. It did take his school to get a letter from DS's clinical psychologist before they took his problems seriously but once they did it was so much easier.

The radiotherapy did damage DS's pituitary gland and he had to have growth hormone injections for 2 years during puberty. He still has to take thyroxine tablets and will for life.

DS graduated from Uni last year with an BSc Honours degree. After all the warnings we were given about his treatment I never thought it would be possible.

Radiotherapy does sound terrifying but it is an effective treatment and it does save lives.

But alas, I guess my thread will be deleted as it's too interesting.

wow, you're like being super controversial

Oh Glittery, what a wonderful, life affirming post.
I have a tear in my eye now.
I hope little Neon will be like your ds in ten years time, fingers crossed.

IWishIWasSheRa: 'Proton therapy' is still the use of ionizing radiation....explain why its better please?

I'll say what I said on the other bitchfest thread

I wish with all my heart that my mum hadn't had radiotherapy. And even the doctors at the time have said that it was quite likely that without the radiotherapy she would have died sooner, but not have gone downhill so quickly. Her quality of life was fucking awful. So awful that she choose to starve to death.

Maybe I'd have lost her physically sooner.

But I'd have had her mentally and emotionally for longer.

She regretted the radiotherapy. Everyone in the family regretted it.

It is so far from black and white. Maybe this poor boy will recover after radiotherapy and go on to lead a full life. Maybe he'll recover for a while and buy them precious time. Maybe he'll survive a while but have an awful time of it. Maybe he wont survive any longer than without the radiotherapy.

Only way to know for certain is with hindsight.

Would you like to be the one to decide? And would you like forums of ill informed fuckwits people calling you names because your choice isn't the same as they think theirs would be?

Yes, there should be discussion about stuff like this. Because it is important stuff. But there is no good reason why threads bitching about a mother facing losing her child should be left up in the name of free fucking speech.