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

[OscarPistoriusBitontheside]

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.

'his consultant has told us that its not true that there is no NHS protocol for relapses, even at the moment, and clinical trials for relapse are starting soon, one at our hospital and one in London/ Birmingham.'

This must be relatively recent. Vanessa Riddle went to Germany in August for treatment of relapsed Stage 4 neuroblastoma after learning there was no treatment for her relapse.

A boy from A's unit, age 4, is on a trial now for Stage 3, but some of the others who were Stage 4 did not qualify for it due to either their staging, response to chemo or the location of their primary tumour. One is raising money to go to Germany.

I think it is. DS is stage 4 high risk. We were asking about whether we need to get the money together for treatment abroad in case of relapse. I don't know the timescales for the trials starting, in all honesty.

It may depend on where the relapse is in the body as well. I don't know.

In fairness the the doctors, many posters have commented on the importance of them listening to the parents - the complication here is that one of the parents did want to go ahead with radiotherapy. When the parents are not a united front, it must make it very difficult for the medical staff in seeking informed consent.

Thanks MrsD

I would prefer a line drawn more in the parents' favour even if it means more risk to children, not just in health issue but more generally although I accept a lines does need to be drawn and parents do not own children and there are limits to what they can do to them or refuse to allow happen to them. Very hard decisions.

xenia I respectfully disagree. I think that the decision needs to be what is best for the child, regardless of what the parents want. They know their child best, of course, and ultimately have to live with the consequences but the child needs a voice too.

In some ways I'm grateful that we have no choice but to blindly follow the Drs for the initial treatment. If we don't, DS will die so its a no-brainer. The risk of relapse for neuroblastoma is so high, even with treatment that I do think you would have to be a little crazy to refuse treatment for it, but that's my opinion. I can't imagine what the poor mum is going through.

on the consent score, although i think an older child should be consulted as reallytired suggests, i really can't imagine putting it to a 7 year old that they might die. because this couldn't be discussed without mentioning that, it is very understandable that childs consent isn't central.

taking their parents view has a wider logic - you are right that we don't own children xenia - but childrens views in adulthood often (though obviously not always!) reflect their parents own views. it's the best guide you get to how the child might think about it.

and, the parent will have to live whatever outcome the treatment has, and with the process of it, alongside their child.

Trazzle, I'm so sorry about your ds's condition and I really hope the new protocol helps. Neuroblastoma is grim. I'm a health journalist and a couple of years ago went to Hanover to hear the specialists there talking about their trials. Very impressive clinicians and scientists but it's really, really hard for them to make much progress - I do hope things have moved on since then.

The 'best interests of the child' test worries me as it often seems to be used to justify the authorities doing what they want to a child - as in the Rotherham foster parents case. Who defines 'the best interests', for instance - surely a dawn raid on a little boy who has been very ill, forcibly taking him away from his Mother, isn't in his best interests.

expat i didn't ask a ton of questions at the time because i could only take a piece of information at a time.

although i don't know what i'd have done different, and there was a logic to my thinking, the emotional state of that time i really couldn't call sanity

Same here, Edgar. man-hug. Nearly 8 months of complete exhaustion (because there are no breaks in the treatment, no going home, etc) and near insanity towards the end.

For us it was a no-brainer as well, but even with successful stem cell treatment Aillidh still had a very significant risk of relapse. Without it, the risk of relapse stood very close to 100%, and would probably have been quite rapid.

(((mrsdevere))) that must have been a heartbreaking decision to make, i hope you had some precious time with her in the comfort of your own home where she felt loved and secure xxx

You always 'speak' very eloquently about your experiences and i am sure your words give help and support to many parents xxx

Sorry, MrsD I have to say that, in your situation, (and obviously I can't say for certain) I would have done the same as you. Whilst there is still reasonable hope for us, DS will have whatever treatment we can access, but DH and I have talked over what might happen if we were given the choice of an extremely aggressive and possibly fatal treatment which left little chance of success, and we agreed that we would probably end treatment. I do understand though that that is talking about it now, when it's not a reality for us and things change.

I do think, though, that it is not fair to judge this lady, who is doing her best as a Mother, however much we think that she may not (or may) be doing the "right thing" for her child, until we have been in her shoes. I thank God that I'm not in them because it would be horrific to have to choose to put DS through some of this, knowing what the possible outcomes/side effects will be.

Thanks ((unmumsnetty hugs))

Not read whole thread but I believe in England a parent can be taken to court to force treatment if it the chances of that treatment offer a certain percentage chance of survival which I think is 60%. Does that make sense. In lots of cases can be hard to prove as usually when parents disputing treatment it's about difficult choices with less than certain outcomes. Hence the emphasis here about the radiotherapy being potentially curative.

This child will potentially already have lots of side effects of his surgery, the mum will be hoping against hope he will be okay without radiotherapy, she will be having to make very quick decisions whilst in shock. I find it hard to condem her even if I disagree.

Who I can easily condem are the multitude of quacks out there offering. Oxygen therapies, vitamin infusions etc to children with cancer at a price. Often exploiting desperate families who have been told conventional treatment has nothing to offer. Fine in some ways to keep trying but I think better to be at home for your last days or months with your child.
Again I find it hard to condem the families but I think those profiting are unethical and exploitative.

Sorry told conventional treatment has nothing MORE to offer

I'm reading back and realise this thread has now turned to many families now sharing their own experiences - I'm sorry if my post now looks stark and out of place. Should have read whole thread. You all have my sympathies and I wish your children all the best. Lesson learned on reading thread.

bissy, the 60% may be right - that would be an issue of when a parent could force the NHS to fund something.

As someone who hasn't had a sick child I almost feel an interloper amongst parents with such sad stories, but it is still a really important issue where that line is drawn of the state over ruling the decision of the parents particularly where the advantage of the treatment is not clear or not a massive advantage. If it improves the chance from 67% to 80% as was quoted in this case in my view that is small enough to enable the parents to have the right to decide, just like you could decide if your child eats sprouts or MacDonalds. If it's life or death and just about all doctors in the UK and abroad would agree and the child is under about 13 and the parent will not agree then the court should decide and force the treatment.

Bissy I think you're totally right about the 'alternative' treatments. There was a terrible case recently where parents raised money to take their child to Mexico as a 'last hope'. Sadly she started to fail and they had to get her home where she died. Somebody made a lot of money out of their despair.

Xenia - those figures make very different reading to the ones I read - 35% survival without radiotherapy and 80% with. I hope yours are right!

'Bissy I think you're totally right about the 'alternative' treatments. There was a terrible case recently where parents raised money to take their child to Mexico as a 'last hope'. Sadly she started to fail and they had to get her home where she died. Somebody made a lot of money out of their despair.'

I know and have met that child's mother. Again, at issue was the fact that there are non-'quack', if you will, alternative treatments, real treatments in top hospitals in Europe and N. America that are not available here or funded by the NHS which are viable alternatives for children like this one, who had relapsed neuroblastoma. So people like this child's family find themselves absolutely desperate and preyed upon. Or, by the time the monies are raised to partake of these treatments, the child is very sick and their odds of survival far decreased.

Believe me, I'd never have believed this is as common as it is until I saw it myself . Just look at Neuroblasoma Alliance's appeals page.

And for many other cancers, there's not enough treatment because they are not as 'popular' - well, none of them are because children can't lobby as well as adults. Blood cancers like leukaemia and lymphoma, the only treatment for relapsers who can be remitted again or those with high-risk genetic abnormalities is bone marrow/stem cell transplant, it has limited success in more than a few cases, and many who are mixed race or ethnicity can't find a donor.

Northern, the problem with press articles is they are often not right. I did read in the press 67% with just radiot and 80% chance of survival with. I know doctors often cannot easily know the statistics anyway so it must be pretty easy to present figures to a court to push through your view as a doctor although I am sure most of them just want what is best for the child anyway. Apparently no tests have been done on children on radiotherapy anyway and in Germany they don't give radiotherapy to children whose operation has left them cancer free as they think the risks do not justify the damage.

Anyway I think this mother has said if the cancer comes back she will consider her position and a very recent scan was uncertain as to whether it were back despite the press reporting and one of her relatives wrongly saying to the press it was back.

As for what is a quack treatment and what is not it is really important parents and doctors look at all possibilities.