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Mother doesn't want her son to have radiotherapy after having brain tumour removed.

185 replies

OscarPistoriusBitontheside · 07/12/2012 14:49

Can't make the link work but it's on sky news.

Long story short a mother wants to deny her son radiotherapy treatment after his having ha a brain tumour removed because she is worried it will affect his long term health. Doctors have said he had a better chance of survival if he has it. Then estranged (according to the press) father agrees with the doctor.

Personally I think she's crazy. I know two small children who died of brain tumours in the last year and I can only imagine their parents would have given anything to even have had the chance of a discussion about radiotherapy with their doctors.

OP posts:
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ReallyTired · 07/12/2012 14:56

None of us know the medical details. It may well be that the child's chances of survial are slim and the mother wants to maximise quality of life left.

It would be interesting to know what the seven year old boy wants. Children can be surprisingly mature when faced with death.

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ILikeToHoHoHo · 07/12/2012 15:00

You don't know the full details.

Maybe try walking a mile in their shoes before you judge.

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Chopstheduck · 07/12/2012 15:03

here


It does sound like he is expected to recover in the long term from the quotes of the mother, she seems to be talking about the risks of long term effects.

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flatpackhamster · 07/12/2012 16:46

Chopstheduck

here

It does sound like he is expected to recover in the long term

IIRC you don't get a long-term recovery. What you get is a period of time during which the cancer probably won't get any bigger. It's usually 5 or 10 years.

from the quotes of the mother, she seems to be talking about the risks of long term effects.

What long-term effects? More serious than dying?

I'd be really interested to know which 'experts' she consulted and where she did her research.

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lljkk · 07/12/2012 16:52

I understand the mother's concerns but it sounds like she has a naive view of cancer. Because her son appeared healthy, she wanted to think he was fine, really.
But cancer is a ticking time bomb. I can't tell you how many times I've spoken to bonny happy people who knew they had cancer, had already had some cancer, went on to get treatment for years, & died of it anyway. After horrid lengthy illness.

Such a nasty nasty disease.

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lljkk · 07/12/2012 17:01

Oh heavens, the boy's name really IS Neon.

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bunchamunchycrunchycarrots · 07/12/2012 17:08

Elsewhere she has commented on a doctor referring to the radiotherapy as 'frying his brain' and following this comment, she has 'freaked out' at the thought of what this treatment can do to him. I think she has been foolish to not seek a second opinion if she lost faith in the treating doctor, but it sounds like an ill advised comment on a treatment that is pretty potent, and is for prevention as opposed to cure (his tumour was removed completely and they want to make sure no cancer cells remain, not that there are cancer cells to blast with the treatment). It's a difficult situation, but I don't think she's really thought through the implications in her panic over what exactly this treatment is for and can do to her son.

As a side note, I met a girl I went to school with a couple of years ago, and she'd just gotten over treatment for a 3rd brain tumour she'd had in 2 years. She had 2 young kids, but the tumours were as a result of chemotherapy she'd had in childhood to treat cancer she had at the time (I think that was lukemia).

I don't think her fears over his long term health are without any foundation, but she should have sought further advise before deciding to 'bolt' with her son, although she claims she didn't she just doesn't take her mobile phone with her case is affects her son's health.

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lljkk · 07/12/2012 17:19

She had a long list of concerns, the radio news was detailing today. She may be right, but the most likely alternative is a hideous death at a relatively young age. I know it's a hard choice.

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SantaFrontPaws · 07/12/2012 17:22

Maybe she is just scared shitless and is just trying to,run away from the problem. Cancer is a right fucker - your loved one looks ok-ish and you can't imagine them just fading away. You kid yourself that if you love them enough, care for them enough, protect them enough, pray... they won't die.

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hellhasnofurylikeahungrywoman · 07/12/2012 17:22

We can't possibly know because we are not privvy to all the facts.

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DreamsTurnToGoldDust · 07/12/2012 17:31

I saw the story but I think its really hard as I guess none of us knows how we would react if it were our child, just seemed so terribly sad really.

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Twasonastarrynight · 07/12/2012 17:36

It sounds like a horrendous situation for all the family but sometimes death is not the worst option.

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Northernlurker · 07/12/2012 17:38

I think if the radiotherapy had been suggested as a palliative measure her view would be key. But it isn't, it's proposed as curative isn't it? That's why her wishes should imo be disregarded. Because a cure - even with side effects - is a better outcome than recurrence. Sometimes parents are wrong. That's very painful for all concerned.

I hope this can be swiftly resolved and the little lad gets home to his mum. He needs her but he also needs the best medicine can throw at his tumour.

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EdgarAllanPond · 07/12/2012 19:40

i saw this and have much sympathy for those involved.

treatments for brain tumours are brutal - DS1 was deemed too young for radiotherapy at 2 - they did think chemo would be enough to knock it away (at least until he was old enough to have radiotherapy) i have no idea if that
would have worked.

this womans opinion is that her son shouldn't have it - presumably that is the belief of someone who will be with their child 24/7 throughout the treatment he has - can we not believe it to be a rational one?

doctors priorities aren't always the same as parents - any way i doubt very much this is as simple a case as 'you should do anything you can to save his life'

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ArtigeneAuberchoke · 07/12/2012 19:49

The doctor told the High Court today that radiotherapy would almost certainly lead to some cognitive impairment. The mother told the Court she was happy to consent to chemo but not radiotherapy because of the risk of cognitive impairment. The doctor acknowledged chemo could prevent a relapse but it was less certain than chemo plus radiotherapy.

Given those facts I can understand why the mother is at least questioning the radiotherapy. I hope I never have to find out what I'd do in her situation and I hope that if I were in her situation strangers wouldn't judge me.

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EdgarAllanPond · 07/12/2012 19:51

IME being scared can make you blindly follow advice and not question treatment.

both the disease and the treatment are terrifying.

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lljkk · 07/12/2012 19:57

We are forgetting that Dad is involved, too, he wants the radiotherapy for his son.

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Stinkystockingedfeet · 07/12/2012 20:00

I agree with Edgar.

It is likely that the tumour was diagnosed and removed fairly recently - they like to begin the radiotherapy within 6 weeks of the surgery. The poor woman is probably still in shock. I was in her shoes a year ago and it is terrifying.

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EdgarAllanPond · 07/12/2012 20:20

presumably it is the lack of agreement between parents that has meant it going to court?

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EdgarAllanPond · 07/12/2012 20:28

i think it is slightly disingenuous for them to state that he could die within months without radiotherapy - death is possible at any point on either road.

incidentally as Ds was too young, they were 'confident' about chemo being sufficient. i guess if you don't have any choice, then you need to be positive about the options you have.

it did bother me because it seemed obvious they do radio on older kids for a reason, because it increases the chances of survival.

that said, i found the treatment worse than the tumour - by the time you get a diagnosis you've been living with the tumour a while - finding they were going to put a hole through my sons head was a new and terrifying prospect. and that's just the beginning...the urge to pick him and run as far and as fast as we could was strong. but not followed. instead e just followed the prescribed road.

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ChippingInAWinterWonderland · 07/12/2012 20:31

I think, to anyone who hasn't been where she is, the answer is as simple as 'you'd do anything to save them if you loved them' - sadly, as others have said, the reality is, it isn't that simple.

Sometimes parents are wrong, but sometimes they are right.

My heart breaks for those posters who have been there, who had to make these heart breaking decisions for their children x

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Northernlurker · 07/12/2012 20:35

Radiotherapy is brutal no doubt and of course anything can happen. I think though that in this child's case the available evidence must be overwhelmingly that radiotherapy improves his prognosis. The Trust concerned simply would not have taken this to court otherwise.

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ReallyTired · 07/12/2012 20:52

Maybe the mother's view is that her son would be better off dead than having severe brain damage. Sometimes loving a child means letting them go and not having lots and lots of fruitless medical interventions. Sometimes loving a child means making their death as peaceful as possible rather than artifically prolonging their discomfort.

Its very sad and I hope that the little boy has a postive outcome.

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Xenia · 07/12/2012 20:59

The parents will agree the treatment. The mother is happy for chemo but not radiotherapy.

I think the law has always been that you can decide your own treatment or lack of it but not cause the death of your child eg Jeohovah's witnesses who cannot have blood transfusions - they can refuse them for themselves but the English courts will force their children to have them.

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MrsDeVere · 07/12/2012 21:09

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