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

(186 Posts)
OscarPistoriusBitontheside Fri 07-Dec-12 14:49:11

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.

ReallyTired Fri 07-Dec-12 14:56:48

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.

ILikeToHoHoHo Fri 07-Dec-12 15:00:49

You don't know the full details.

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

Chopstheduck Fri 07-Dec-12 15:03:58

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.

flatpackhamster Fri 07-Dec-12 16:46:29

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.

lljkk Fri 07-Dec-12 16:52:10

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.

lljkk Fri 07-Dec-12 17:01:19

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

bunchamunchycrunchycarrots Fri 07-Dec-12 17:08:23

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.

lljkk Fri 07-Dec-12 17:19:37

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.

SantaFrontPaws Fri 07-Dec-12 17:22:17

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.

hellhasnofurylikeahungrywoman Fri 07-Dec-12 17:22:37

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

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.

Twasonastarrynight Fri 07-Dec-12 17:36:05

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

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.

EdgarAllanPond Fri 07-Dec-12 19:40:22

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'

ArtigeneAuberchoke Fri 07-Dec-12 19:49:55

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.

EdgarAllanPond Fri 07-Dec-12 19:51:54

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

both the disease and the treatment are terrifying.

lljkk Fri 07-Dec-12 19:57:05

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

Stinkystockingedfeet Fri 07-Dec-12 20:00:00

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.

EdgarAllanPond Fri 07-Dec-12 20:20:48

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

EdgarAllanPond Fri 07-Dec-12 20:28:48

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.

ChippingInAWinterWonderland Fri 07-Dec-12 20:31:39

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

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.

ReallyTired Fri 07-Dec-12 20:52:59

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.

Xenia Fri 07-Dec-12 20:59:14

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.

MrsDeVere Fri 07-Dec-12 21:09:40

This is one of a few situations that no-one should begin to try and judge this woman unless they have a certain amount of experience.

She does not come across as the hippy nutcase that the media are nudgingly trying to portray her as.

She has been terrified by the term a doctor has used and has witnessed her child go through brain surgery.

BTs have a very low cure rate across the board. The treatment is brutal and dangerous.

She is doing what she feels is best for her child. She may not be right but she is not neglectful or crazy.

She loves her boy and she doesn't want to lose him.

I would assume that a court case regarding this treatment would be very different from one regarding a blood transfusion. In the case of a blood transfusion the medics can usually state that it will categorically achieve a cure or prevent death.

This is never the case with cancer treatment.

MrsDeVere Fri 07-Dec-12 21:10:47

And massive hugs to you Edgar x

Skiffen Fri 07-Dec-12 21:11:04

lljkk the Mirror reports his sister is calle Elektra.

I have no idea what I would do in this situation, but I do know I would not run away to an oxygen chamber in Sussex. I would try and maintain a good level of communication with HCPs so that I could understand their recommendations and discuss my concerns. Running away will never help your cause.

OscarPistoriusBitontheside Fri 07-Dec-12 21:19:48

I know I'm judging her based in two shocking cases in my own circle in the last year. It's really coloured my view of what she's done.

The whole story is just desperately sad.

EdgarAllanPond Fri 07-Dec-12 22:00:08

well, just as well the child I had with a brain tumour was the only one with a normal name!

the mother isn't trying to cure him through wacko methods though, she's consented to subjecting him to chemo - that will have consequences for his general health, and for his development.

i can't guess at her logic, not really, but perhaps she has faith that chemo will be enough and doesn't want the added risks of radiotherapy.

she may have a feeling about it that is to do with knowing her son really well - that's one thing no doctor will have on it.

hugs back mdv i don't usually talk about this one, strangely i don't know much still cos i can't google it!

MrsDeVere Fri 07-Dec-12 22:09:04

WTAF is it with MN and fecking kid's names!

We all have to make decisions about our own and our children's health/treatment.
This case is nothing like refusing a blood transfusion.

Accepting cancer treatment is not a simple choice. It often seems that way, particularly right at the very beginning but as things progress it becomes more complex.

Radiotherapy on a young child's brain is not a simple treatment option.

Cancer is fucking wanky toss crap.

Xenia Fri 07-Dec-12 22:24:35

I was the one who mentioned the blood transfusion cases which I suppose are at the easy end of things and helped established the legal principle that a parent cannot in England decide something that might kill a child. The question is in particular cases what goes in which category. If I refused our babies extra vitamins because in my view breastmilk was enough the health visitor tutted but accept the position. Mothers can choose whether to breastfeed or take the probably worse option of bottle feeding. You can smoke at home around your child etc etc....

I had a discussion with a child tonight about medical treatment and suggest his proposed GP visit would be a waste of NHS resources. He made his case and it will be fixed up. Sometimes things are not clear cut.

If allowing chemo but not radiotherapy means death then it is in the blood transfusion cases. If it just means say a difference in outcome of 20% may be a court would let the parents decide (plusral not singular - children have two parents). It would help if the mother had her own medical expert putting her views but I'm not sure she does. Very difficult issues

FlyOverTheMistletoe Fri 07-Dec-12 22:28:38

Whilst people sit and judge - please just listen to MrsDeVere, and other parents who have had to go through - not only a living hell - but then regrets................should I have made my very very very ill child go through more of this ......shit............crap..............pain...............what, why, yep, cancer is a fucking wanky toss crap, and so are other illnesses and conditions. Today I am wearing no judgey pants. As parents - maybe we should all just ........................ <wish I knew the answer>

AmberLeaf Fri 07-Dec-12 22:30:54

Who cares what this womans children are called?! FGS

I can't imagine how she feels and what's going on in her mind as thankfully I have no experience of having a dangerously sick child.

I hope he ok.

MrsDeVere Fri 07-Dec-12 22:31:01

The blood transfusion has been bought up elsewhere and not in the intelligent context you have used Xenia.

People really do seem to think this is a clear and simple case. Give the radio and cure the child, the mother must be nuts to do anything else.

If only, if ONLY that were the case.

ReallyTired Fri 07-Dec-12 22:35:52

It would be interesting to know what Neon wants. Ultimately it is his life that will be affected.

ArthurandGeorge Fri 07-Dec-12 22:40:25

I wonder if both parents have parental responsibility. Usually you only need one person with PR to consent to a treatment to be able to go ahead.

I agree that it isn't as clear cut as a blood transfusion. The media are implying she is saying she would rather take the increased risk of death over risks to his growth (which can be managed with hormone treatment) and IQ and it is this rather than any distress that the treatment might cause him that is stopping her from consenting. If it was the case that the treatment would cause him significant pain and suffering and it was that that she was objecting to then I would have much more sympathy with her. If I was offered the choice of death or the loss of 10 IQ points I would take the loss of IQ.

Xenia Fri 07-Dec-12 22:41:03

I hvae a lot of sympathy for giving parents more rights - they are their children. I'm a libertarian. I want an England where you can home educate or use Eton or the Saudi school in London. I want parents to be able to make choices even of things of which I don't approve so I would side with the mother here.

However the principle is one of the most important parents ever need to consider. The easy cases are if the child will die anyway and X treatment will just make it suffer more then I think most of us would agree the parents should both decide. However if a treatment has an 82% success rate and without it there is a good chance of death which is what I think we were being told in this case that is a very different matter. I think the judge was surprised today that the mother said she would accept chemo though so if chemo can be a massive help even without radiot which may just be a bit of an added extra possible advantage it would seem reasonable to let the parents decided no radiot. It is certainly not wrong it's before a court.

lljkk Sat 08-Dec-12 08:51:05

I like Electra as a name, I went to school with one.
I think the comments re names were very obvious asides.

SantaFrontPaws Sat 08-Dec-12 09:26:53

I agree that a parent (or both) can make and informed choice over treatment for their child.

Sadly, we don't always agree on what is 'good' for a child - preventable deaths from refusal of medication/treatment (so a blood transfusion on religious grounds). Or maybe a mum who is just not in her right mind. This is where the courts do need to step in but it is a minefield in some cases.

Sadly there are also well meaning parents/family who read all sorts of crap on the web and get their hopes us - treatment regimes, diet, dodgy medicine from Mexico (which my brother was prepared to fly to Mexico to buy and smuggle home - no, really) and many other things in varying degrees of quackery.

I like the children's names and I agree that has bugger all relevance to anything.

I understand that that court will br ruling today. I hope that means, whatever the outcome, that Neon is back in his mother's care as soon as possible. I think she's wrong about the treatment for him but nobody surely could doubt her love and care for him or his need of her.

Skiffen Sat 08-Dec-12 09:59:36

I think what is sad, and what is not necessarily clear from some news reports, is that it is disagreement between the parents that have led to legal action.

It must be so stressful to be in this situation and not feel able to come to joint decisions on treatment.

Ps-their names are unusual, they're twins named as a pair and I think comments on their names reflected that. Noting their names are unusual does not negate the sympathy posters feel for their parents.

Skiffen Sat 08-Dec-12 10:01:42

What I throught was really off and lacking relevance in lots of the online media reports is the number of photos of his Mum - clearly personal photos.

giraffesCantFlyLikeReindeer Sat 08-Dec-12 10:42:35

bbc doc on paediatric cancer really worth a watch - very moving and explains some of the very difficult decisions faced.

The treatment is cruel, grueing, and often uncertain. I have whitnessed many children die this year from paediatric cancer. Have leant things about brain tumours and radiotherapy that I had no idea about.

giraffesCantFlyLikeReindeer Sat 08-Dec-12 11:24:41

about 32min in is where the parents and drs are discussingt he long term side effects of radio therapy on their 5yr old dd.

Xenia Sat 08-Dec-12 12:18:25

The point is where does the law intervene and where not. Life and death they will. Issues like should the child have the MMR or not they won't.I don't know why this ie before the court. I don't think it was the father applying. I think it was the NHS trust which wanted to give more treatment than the mother wanted.

hackmum Sat 08-Dec-12 12:42:09

Treatment for cancer is almost always about weighing up a balance of probabilities - often two doctors will disagree about the best treatment. So it's a very sad story. I'm sure the mum has her son's best interests at heart.

PerryCombover Sat 08-Dec-12 12:47:26

I wish them all well and would hope that there is a mechanism the court can use to help them to make a decision rather than force one upon them.

Just heard on the radio that the decision has been postponed because of 'changes in the medical landscape'. No idea what that means. Just hope the lad's condition isn't worse.

MrsDeVere Sat 08-Dec-12 13:15:05

The fact is, he has a brain tumour.

The rates of cure are very low.
The treatment is brutal.
No one can tell her 'if we do this treatment your son will live'
She has been told the side affects and they are many and serious.
She loves her son.

I wish them all that they need to get through this terrible time. I wish him better.

TBH I think that is the only appropriate thing for an outsider to do.

Radiotherapy is truly horrific. What a decision to make sad

LoopsInHoops Sat 08-Dec-12 13:38:09

Surprisingly sensitive article from Daily Mail.

From reading the various newspaper articles about this case, it seems she has a point. Now though, the very worst thing that the authorities can do is keep the little boy from his mum. That is simply cruel IMO.

Xenia Sat 08-Dec-12 13:50:45

It sounds like some hospitals would not give the radiotherapy so not as cut and dried as the press present it and as ever police and social worker total over kill and child snatching by the state - plus ca change.

mercibucket Sat 08-Dec-12 14:04:14

Is the little boy in care? If so, how awful

I read that the father is now saying he supports whatever the mother's decision is

So so hard and so so sad. No rights and wrongs, and no guarantees either. It is the parents who will have to live with the consequences of any decision they take, not the doctors. I'm so glad I am not in their shoes. We have had to make decisions about chemo treatment for our son, in a much different and easier context, and it is so appallingly hard to have to make decisions you know could impact their whole life. I really feel for them

No, I don't think he is in care.

Here's what makes me angry. The mother has some very real concerns about radiotherapy and whether it's the right course of treatment for her son.

The media report it as if she is some negligent mother who is on the run from the law. In the emergency hearing this morning the judge reserved judgment for 10 days, obviously to consider the complex facts of the case, but also shows that the boy isn't going to die in days as was inferred by the hospital trust.

Pancakeflipper Sat 08-Dec-12 14:19:43

I was actually impressed that the mother has questionned the treatment for her son. I don't know if she is right or wrong, but impressed she has challenged it. She's not doing it to be awkward, she must be petrified.

So often it all happens so fast, so unexpected that you put blind faith into something you know nothing about. The trust is with consultants etc. To really question and challenge isn't easy and saying no is very tough. For Neon it doesn't seem so clear cut on what is the best.

LoopsInHoops Sat 08-Dec-12 14:24:14

The doctor referred to the radiotherapy as 'frying' his brain. She understandably freaked out and looked into alternatives.
Other hospitals don't automatically radiate, and she has a friend who refused radiotherapy for their child, who is now doing well.
The surgery was successful and no signs of cancer atm.

Makes sense for all options to be considered if there is time to do so.

Poor woman. sad

MrsDeVere Sat 08-Dec-12 15:08:42

He was removed and put into emergency care for a very short while.
He was then taken to his father.
There never seemed to be a great animosity between the parents anyway.

Poor family. its just awful.

None of know the true implications and outcome if said treatment was given.
For all we know, it could be life-prolonging care rather than life-savingsad
I'm sure the mother has reasons for delaying or witholding treatment.
Sometimes chemo & radiotherapy are given purely just to add a few weeks/months on to ones life, maybe she didn't want to add more suffering to the pain he's already going through and wants his last days as normal as possible....we don't know so people shouldn't speculate, this lady will be going through hell & so will her little boysad

Thanks MrsDV - I'm glad to read he's with his father. The last thing I heard he was in foster care after he and his mum were found and that just seemed so unnecessarily traumatic for everybody.

Xenia Sat 08-Dec-12 16:45:41

These social workers like to go out of their way to cause as much trauma as possbile and move children straight to care in case like this even if there are abotu 10 suitable aother relatives like the father and other relatives available. It seems to be the way they operate with no concern for child psychology.

CoteDAzur Sat 08-Dec-12 17:03:53

Radiotherapy: Near-certainty that her boy will never have "normal" cognitive functions.

No radiotherapy: Reasonable chance that her boy will survive & have normal cognitive functions.

Tough choice to make, but her choice does not sound so unreasonable. Am I misunderstanding something?

MrsDeVere Sat 08-Dec-12 17:13:48

The boy went to his father Xenia.

Social workers would not have instigated this process and they would have very much been guided by the medical advice.

Cote - I think medical opinion would be that the side effects of radiotherapy are possible but not certain and may or may not be serious - I've read for example of a small drop in IQ points. However in this child's case there may be factors which make more serious consequences more likely? The statements made in court certainly seemed to suggest Neon's doctors felt there wasn't a 'reasonable' chance of survival without radiotherapy. POssibly that opinions been revised though?

Chandon Sat 08-Dec-12 19:22:45

Just feel dreadfully sorry forher.

In her shoes, I would be out of my mind. Literally.

Xenia Sat 08-Dec-12 19:22:54

He did not go right to his father. He was taken by social workers and put with foster parents over night and only returned to his father at 9[m at night which is very late for alittle boy. There was no need for that.

imaginethat Sat 08-Dec-12 19:23:24

I think she comes across as an intelligent and devoted mother who has and is faced with an unimaginably difficult situation. If she was here in NZ where she grew up, she would have had more choice.

MrsDeVere Sat 08-Dec-12 20:58:28

I didn't say he went right to his father. I said he went to his father. Further up thread I had already said he spent a short time with FC.

I have no idea why. It is not usual. Children will generally go straight to willing family members if they are identified and waiting. For one thing, it saves a hell of a lot of money and work if they do.

MrsDeVere Sat 08-Dec-12 21:04:06

Radio and surgery on the brain can cause a lot more than a dropping a few IQ points.

ADHD, ASD type behaviour, Learning difficulties from mild to profound, hemiplegia, deafness, blindness, seizures (which in turn can cause the already listed issues).

Very few children come through cancer treatment without sequela (including the increased risk of cancer later on in life).

There are parallels with very prem babies. A common view is that as long as they survive, all is well. This is not the case. As with childhood cancer the reality is far more complex.

IME people are not interested in that. They just want the 'miracle' feel good stuff.

bunchamunchycrunchycarrots Sat 08-Dec-12 21:36:50

The more I think about this, the more I think I'd probably have done the exact same thing as this mum did in her shoes. Whether it was done in a calm, calculated way taking the risks and benefits into account, or just the fear of what that treatment would do to my child, I honestly think I'd do the same thing. Whatever happens, I wish the boy well, and my thoughts are with his family.

GlitterySparklyBaublesOfDoom Sat 08-Dec-12 22:12:19

I'm sorry but where are you getting all this bullshit info from? My DS had a malignant brain tumour aged 8 and had 33 days of radiotherapy to his head after neurosurgery and the only problems he had were short term memory loss and forms of dyslexia and dyscalcula that he overcame in about 2 years.

He graduated from Uni last year and has absolutely normal cognitive funtions and has had from about a year after he stopped treatment. Unless you could see the scar down the back of his head you wouldn't have a fecking clue that he'd had a brain tumour or radiotherapy.

How many of you posting all this scary shite on this thread have actually had a DC who has had radiotherapy to the head and spine after a brain tumour and know what it means in reality?

MrsDeVere Sat 08-Dec-12 22:18:28

My dd died from cancer
I work with children post radio therapy.

I am glad you child got better.

GlitterySparklyBaublesOfDoom Sat 08-Dec-12 22:22:40

And you know what? We were warned that it was likely that his tumour could grow back and kill him without radiotherapy as they hadn't been able to remove it all. We opted for radiotherapy rather than risk that. And it worked. We're 17 years on and no more cancer. Shoot me now - we fried his brain. And like I believe any doctor ever said that!

ChippingInAWinterWonderland Sat 08-Dec-12 22:28:28

MrsDV x

MrsDeVere Sat 08-Dec-12 22:29:08

As I said.
I am really glad your child survived and he graduated uni.

My daughter made it to the first year in secondary.

I don't get why you are being so hostile towards me. No one is criticizing parents who chose to go ahead with radiotherapy or any other kind of treatment.

We are trying to explain the reasons why a parent might not want to go ahead.

But thanks for your bullshit comments and hostility. They have really topped my day off a treat.

expatinscotland Sat 08-Dec-12 22:30:12

What MrsDeVere said. I'm very glad some children get better with no severe side effects. I saw many who had very serious ones following radiotherapy and two who relapsed despite having it and couldn't take anymore, they were so profoundly affected.

My child, however, died of leukaemia like MrsDeVere's.

ChippingInAWinterWonderland Sat 08-Dec-12 22:30:33

Glittery - I am so very very pleased it all worked for your DS and he's gone on to live a very good life so far - with lots more to come smile However, this is not always the case and to suggest others don't know what they are talking about is cruel and unfair.

TheSecondComing Sat 08-Dec-12 22:31:26

Message withdrawn at poster's request.

ChippingInAWinterWonderland Sat 08-Dec-12 22:31:55

Expat x

expatinscotland Sat 08-Dec-12 22:37:35

We don't have crystal balls. We try to weigh up what will be better for our children and whatever life they have left. Hey, if I'd have had a crystal ball, I'd never have gone for that fucking transplant that made the last 60 days of her life a sheer hell for her and all of us.

And to the mother of the boy who died of a brain tumour at the same age less than two days after A from the same unit, she wishes she'd never have gone for the radiotherapy, either, just gone home and enjoyed the time he had left, because his end would have been far more pleasant.

Moot point I guess when your kid isn't one of the success stories. No one likes to hear about those. Just bury them, cremate them, and stick to bereavement areas or be shot down as someone who doesn't have a clue what paediatric cancer is like.

giraffesCantFlyLikeReindeer Sat 08-Dec-12 22:43:26

xx

expatinscotland Sat 08-Dec-12 22:43:29

And children in the UK need more options than are available here! We have met so many stuck raising hundreds of thousands of pounds for treatments abroad - not quack treatments, treatments are Children's Hospital of Philadelphia such as proton therapy (which can be given to some children who are too young for radiotherapy, again, depending on the tumour, and antibody treatment in Germany, with much better rates of survival - or battling with boards for funding.

A good friend of mine has just been through the process. Her daughter is 3 and has Stage 3 anaplastic ependymoma. She was rejected twice before finally winning appeal for funding of proton therapy for her daughter.

GlitterySparklyBaublesOfDoom Sat 08-Dec-12 22:43:51

I'm absolutely not being hostile, how could one parent of a child with cancer be hostile to another? We only want the best for our DC and based on medical opinion that is what we do. I apologise completely if that is how my post came across, that was absolutely not my intention.

I have just read some fairly inaccurate stuff about the effects of radiotherapy on here and can understand why some parents would be terrified if that was their understanding of the long term effects. My only aim in posting was to say that it really isn't always like that. The doctors only give the worst case scenarios and very, very few children ever suffer them. Yes one is one DC too many but it was a risk we felt we had to take for DC's long term survival.

My apologies if I have offended anyone.

Screaminabdabaubles Sat 08-Dec-12 22:43:52

Very poignant points well made, expat. sad

MrsDeVere Sat 08-Dec-12 22:45:12

I don't understand why I got screamed at.

All along I have just tried to explain how hard it is for parents to negotiate the treatment and make the decisions because people with no experience are judging the mother.
Then someone who has been through this shit comes on and screams at me because her child lived.

And doesn't acknowledge that my child died.

Today has truly been a crap day.

MrsDeVere Sat 08-Dec-12 22:46:29

It is NOT inaccurate. All those side affects are not uncommon and I have seen them all.

They didnt happen to your child and I am genuinely glad that they didnt.

And yes, you did offend me.

GlitterySparklyBaublesOfDoom Sat 08-Dec-12 22:51:53

I am truly sorry if I did Mrs DeVere. My apologies.

MrsDeVere Sat 08-Dec-12 23:01:43

Ok
Thank you.
I am glad your son beat it, I truly am.

chocoluvva Sat 08-Dec-12 23:19:50

The child is too little to give consent so it should surely be up to his parents to either give consent on his behalf or refuse it IMO.
It's my understanding that the NHS trust are the ones who've brought this case to court. The medics involved must be either very sure that radiotherapy is in this boy's best interests as far as they can tell or very unhappy that their advice isn't being taken. (I had chemo, surgery and radiotherapy last year and only afterwards did it occur to me that there were no choices offered. All the medics assumed I'd undergo the treatment plan. At one stage the duty consultant wouldn't let me go home from hospital when my immune system was very low - even when I pointed out that I was in a ward with infectious patients, had little access to food that I could eat due to my multiple food allergies and was being looked after by a nurse who had a runny nose. He explained that "he couldn't take the risk of discharging me."
What do they mean by the operation being successful? Curative? Or without complications? If it's the former and this little boy is having chemo, why are they desperate to give him radiotherapy?
What an awful situation for this mother and anyone else in her situation.

GlitterySparklyBaublesOfDoom Sat 08-Dec-12 23:27:18

I thank you and I am truly sorry for the loss of your beautiful DD. I cannot begin to imagine your sense of loss and pain. Cancer is an utter bastard. A thieving bastard, stealing loved ones away from us.

expatinscotland Sat 08-Dec-12 23:37:31

And sometimes, it steals our children away after they have endured every single horrendous treatment going. Sometimes, there's no 'miracle' (they don't exist, IMO) and no cure or extremely small chance of success or cure v. truly horrendous and potentially fatal side effects. That needs to be acknowledged when deciding or determining on a course of treatment for any child too young to decide for him or herself.

My child died cancer-free. Her treatment killed her.

expatinscotland Sat 08-Dec-12 23:44:16

People have become so programmed to view cancer as a 'battle' or fight that's to be 'lost' or 'won' that it's sometimes in situations like this, for those on the outside and not involved in the particular case, to forget that it's a disease, with treatments that can kill the patient and sometimes with very, very little chance of success or cure. And it's vital that people - medics, scientists, healthcare professionals, academics and patients and parents themselves - question these treatments constantly for progress to be made!

Why is there no protocol for relapsed neuroblastoma in the UK? Why is there no proton therapy centres? Why has so fucking little progress been made in the past 35 years towards the treatment of the most common form of leukaemia to strike adults and 20% of all paediatric leukaemias? Why are still so many dying of brain tumour?

We need to move past radiotherapy, and this is already being done. Hopefully, one day, the same will be true of chemotherapy.

Because all too often, these treatments are not magic bullets. They are last ditch attempts that will hopefully one day be akin to leeching.

chocoluvva Sat 08-Dec-12 23:46:56

The medics don't have all the answers. Many parents and patients decide to leave decisions about treatment to the medics but parents who don't agree with the medical advice are surely entitled to have their wishes respected, particularly when they are undergoing enormous stress already. There's often no black and white right or wrong choice in this complex situation.
I'm very sorry for your dreadful loss too, expat and MrsDeVere.
I hope the treatments for cancer improve.

chocoluvva Sat 08-Dec-12 23:50:21

Sorry expat, cross posts - my slow typing.
I so agree - chemo and radiotherapy only work because they destroy cells, including healthy tissue.

expatinscotland Sat 08-Dec-12 23:56:21

'Many parents and patients decide to leave decisions about treatment to the medics but parents who don't agree with the medical advice are surely entitled to have their wishes respected, particularly when they are undergoing enormous stress already.'

This friend of mine, well, it's pretty public who she is. I met her when she came onto A's unit last January. Her child's former consultant, without too much detail, is at the least, a git. If she hadn't been as gifted a researcher as she is, and so determined and relentless, her child, well beyond balance of probabilities, would be dead.

No case that gets this far is simple or black and white. Our own was more so but that's because a) we were blessed with one of the most amazing consultants known to leukaemia, a brilliant woman who works tirelessly with other medics worldwide to devise better and provide the best treatments for paediatric leukaemia possible b) very, very little progress has been made in decades for the form of leukaemia our daughter had.

Does that make our loss easier to bear? I can tell you only from the experiences of others, yes.

KEEP questioning! KEEP researching! KEEP lobbying and fundraising for more research into paediatric cancer. KEEP being open and pushy about paediatric cancer awareness!

If you don't feel comfortable with the protocol prescribed for your child, then DON'T take it lying down!

Radiotherapy isn't an ineffective treatment though. For some tumours it's a highly useful treatment and research is ongoing to establish when and how it should be used. My mil worked on a research programme a few years ago looking at the use of radiotherapy in breast cancer patients for example.

It may not be right for this child but it's not a pointless brutality per se. I hope that both parents and doctors can come to an agreement because they all have to live with this choice. It's a very, very hard world where you have to face this sort of thing - as a parent or as a professional.

Screaminabdabaubles Sun 09-Dec-12 00:10:06

Expat, which would you say are the best charities pursuing research into paediatric cancer, as far as you know, please?

expatinscotland Sun 09-Dec-12 00:56:45

It certainly does have a place, Northern, and it may have in this case and the judge has left a decision for two days so that all sides can speak and hopefully reach an agreement before he must rule on it.

Screaming, IMO, and it's just my opinion, Neuroblastoma Alliance is an excellent paediatric charity. The Brain Tumour Charity, Leukaemia and Lymphoma Research and The Aila Coull Foundation, which has just been set up as charity status, so see their page on FB, is exclusively dedicated to research into paediatric AML (Aila was a 16-month-old baby in Aillidh's unit whose mutations would have required bone marrow transplant, but she was unable to be remitted with the chemo available and died), are good ones.

Cancer Research UK dedicates very little of its takings into research of specifically paediatric cancers, or cancers which largely target children and teens, such as Ewing's sarcoma, osteosarcoma, retinoblastoma and neuroblastoma, although apparently it has been able to grant funding into a new drug that will hopefully pass trials to treat AML (AML is the most common form of leukaemia in adults) (the past two drugs designed failed in the last stage of trial). Many afflicted with AML, however, die from the chemo protocol, as it is one of the harshest, and those whose mutations require stem cell/bone marrow transplant present with rather shocking overall (OS) survival rates), particularly as many diagnosed are 'elderly', over 55.

Worldwide AML chemo protocol, including for children, involves 3-4 rounds of 7-10 days of treatment of 3-4 chemotherapy drugs delivered via Hickman/central line in a strict hospital setting. No oral, no day unit, no going home. The treatment causes rapid depletion of all immune system excepting lymphocyte (AML is a cancer of the granulocytes), so the patient is usually, from about the 4th-5th day of treatment, confined to strict isolation.

The goal is to annihilate pretty much all of the immune system, as theirs is a cancer of it.

The drug GCS-F is normally not used unless the patient has failed protocol and needs to have his/her blood cell counts induced to rise to be knocked out with more chemo. Instead, it is strict iso and blood and platelet transfusions until blood cell counts rise enough for the next round of chemo to begin.

Those who are 'lucky', and do not present with mutations requiring stem cell/bone marrow transplant or do not die from infection following chemo usually remain in hospital entirely from 6-8 months.

Those who are not so fortunate face a 5th and further round of chemo IF they remit, a conditioning round to allow them to take stem cell/bone marrow transplant. Since many forms of AML requiring stem cell/bone marrow transplant have a very high (50-85%) risk of relapse, protocol is that attempt to transplant must take place following clear cytogenetics of bone marrow aspirate within 12 weeks of the last course of chemo. If possible, a harvest of the patient's own bone marrow is taken as backup and to donate to medical research upon their death should the parent or patient consent (we did. Our daughter had an absolutely cracking harvest, cancer free, of 500mL of fluid).

This 5th round is 7 days long. Consensus at a conference in Geneva of clinical study was that chemo drug treatment was on par with chemo + total body irradiation/radiotherapy, and A's own consultant recognised that radiotherapy can come with as many if not more problems as chemo itself.

It consists of 4 drugs given via central line and completely eradicates the immune system, including lymphocytes.

If the patient develops infection before the graft takes, a not insignificant likelihoood, the chance of death grows.

Aillidh fell into this. She had a very common infection known as human metapneumo virus that migrated from her throat into her lungs. She also had a bacterial infection call psuedomonas that migrated from her gut into her lungs, probably through vomitting. These two infections inhibited engraftment. She then developed graft v. host disease, the only treatment for which is steroids, which worsened everythign in her lungs. And as she had no immune system she didn't respond well to antibiotics and the antivirals available suppress bone marrow function.

The upshot is that by the time her body was able to be on the road to defeating these infections and engrafted, her lungs were so damaged that she died.

This has to stop.

Same way treatment for brain tumours has to get better.

Has to.

Yes, radiotherapy has a place, and it may do in this case and hopefully an agreement can be reached.

But people, there has to be a better way, for all these children.

I don't know what type of brain cancer little Neon has. But there are some of them for which precious little can be done and not without grave consequence.

This isn't some hippy nutter. This is a mother with serious questions about her son's health and treatment.

I can't judge her. We only did what we did hoping Aillidh would be in that 19% of paediatric AMLs with FLT3 mutation who live. She wasn't.

I don't stand to judge a parent in a similar spot.

expatinscotland Sun 09-Dec-12 01:12:09

'My mil worked on a research programme a few years ago looking at the use of radiotherapy in breast cancer patients for example.

It may not be right for this child but it's not a pointless brutality per se.'

Again, it's not without place, but directed it at tumour in the breast of an adult or elsewhere in the body of even a child can be very different from directing it at a paediatric brain.

There was a little girl in A's unit, about 9 months older, who had Ewing's sarcoma in her left arm at the shoulder. Her tumour was such that it developed tentacles around the arteries supplying her arm and it had to be amputed with so much of the shoulder joint that she cannot have a prosthetic fitted.

She underwent 10 weeks of radiotherapy which has left her with many side effects, from infertility to chronic pain. If she relapses, there is no protocol. She will die.

But it wasn't to her brain, and I've seen children who haven't been as fortunate as Glitterys son, and still died, so again, I don't stand to judge her.

Yes I absolutely agree. I just wouldn't want anybody to read this thread perhaps referred for radiotherapy themselves or knowing somebody who was, and thereby feeling perhaps unduly pessimistic about it's chances. I think that it is surely significant that radiotherapy was recommended for this lad at all. The nature of the arguments from the Hospital Trust seemed to indicate to me that there was some evidence to suggest the benefit outweighed the risk?
My bil had palliative chemo and radiotherapy. In his case I think the radiotherapy did perhaps alleviate his symptoms a little. The chemo did bugger all. But he was an adult, completely different kind of medicine to treating children. Just as futile though. He had lung cancer. He got 5 months. Exactly the average survival for his diagnosis.

expatinscotland Sun 09-Dec-12 01:42:36

That's it, though, really, Northern, this is a child. A little child. A little boy.

Xenia Sun 09-Dec-12 08:08:09

In view in this case there seems to be enough doubt that the parents should be allowed to make their own decision. I do not put it into the category of a parent refusing a life saving blood transfusion for a child.

The problem for the law and why this NHS trust went to court is where you draw that line in particular cases where doctors and parents differ in their views. It is not at all easy to decide. If it is cut and dried that most doctors think a child will die without treatment X then that's an easy case even if the parent refuses.

In this case the child s 7 so the issue of when the child itself can consent (see the Gillick case - teenager) is not going to be relevant. I think English and Scottish law may also be slightly different too.

Pantomimedam Sun 09-Dec-12 09:12:59

Horrendous situation. The Mother wants the best for her child and is fully entitled to question what the particular doctors at this particular hospital recommend.

It's appalling that the hospital took her to court for daring to question their orders. It is appalling that the police and social services traumatised her son by raiding the house at 2am and snatching him from his Mother.

There is an entirely legitimate medical debate about the best way forward for this little boy and that debate must involve the parents.

The hospital didn't take her to court for daring to question them. They took her to court to get what the medics believe is the best course of treatment for her son. It is horrible and confrontational and distressing but I am 100% sure it wasn't done lightly by any of the parties involved.

chocoluvva Sun 09-Dec-12 10:11:41

Regardless of the intentions of the hospital I still think it's not their place to try to force this mum into a course of action for her son that she doesn't agree with.
Why should they have a greater right to decide what will happen to this child than the child's own mother?
As expat has seen and on a much smaller (but potentially very significant) scale I have seen too, all professionals don't always make decisions for purely professional reasons. We don't know the individual medics involved in this case, but I think it's naive to be 100% sure their motives are pure. Even if they are, this is not a black and white case - they can't definitely predict what will happen to this little boy whether he has radiotherapy or not.
It's all so sad.
Thank you for the info about cancer charities expat. (One of my bugbears is the disproportional amount of media coverage of breast cancer) - compared with other cancers.

expatinscotland Sun 09-Dec-12 10:18:52

The parties have reached an agreement and the judge has cancelled ruling.

I'd like to remind people, too, that losing your own child, particularly as a young child who does not live to adulthood, there's just no comparison with any other loss. There just isn't.

This is not something a parent facing potential death in their child takes lightly and sadly, I have met some medics who don't know what's best for particular children but can be quite arrogant about pressing their points.

Again, no one knows the in and out of this particular case, but I've seen it happen.

chocoluvva Sun 09-Dec-12 10:27:45

That's good news. Thanks for updating us.

Xenia Sun 09-Dec-12 10:55:31

It must be horrible, expat. It's every parent's nightmare.

It's certainly good that the courts will examine evidence on both sides and not just always side with doctors and that the courts are there to be used when that's needed and there is a dispute between parent and doctors about what is right for a child. I wonder what the compromise is?

Glad that it has been resolved, and maybe just maybe, the medics needed to have an arbitrator in the form of a high court judge who could remind them that this is about a little boy and there are no absolute guarantees.

My personal opinion is that the hospital was very quick to get a court order, but I don't know the facts. Just looks like that from where I'm standing..

LoopsInHoops Sun 09-Dec-12 12:11:20

His cancer is back sad

hellhasnofurylikeahungrywoman Sun 09-Dec-12 13:29:34

What awful news.

Pantomimedam Sun 09-Dec-12 13:40:53

That's so sad. Poor little boy and poor family.

Northern, I do think the doctors and lawyers are very much at fault here. The police raid and social services snatching the child were a direct result of their actions. Causing even more, unimaginable trauma to a small boy who had already suffered greatly.

I don't think it's fair to impugn the motives of the medical staff.

Pantomimedam Sun 09-Dec-12 15:40:17

I think it's entirely fair - and true - to say the SS raid was the entirely predictable result of their actions. The doctors should be working with his family, not against them. I've spent a lot of time working with docs, btw, there are good, bad and indifferent ones, but even the good ones can be arrogant.

EdgarAllanPond Sun 09-Dec-12 15:59:37

i don't think its impugning them to point out that they

1) are making recommendations based on generic evidence
2) will not have as deep an involvement as the parent
3) will not deal with the longer term outcome

bearing in mind they are making recommendations i think it i fair to wonder why courts got involved.

Social services becme involved after the mother failed to attend appointments and effectively disappeared with the boy. The medical opinion quoted in court was that radiotherapy considerably improves his chance of survival. No doctor could responsibly ignore this situation. What was their alternative? To wait for her to return even if they believed delay was going to harm the boy's chances? How could they justify that?

lljkk Sun 09-Dec-12 16:07:00

I've just read her interview in the Mirror (online) and am more convinced than ever that she's bonkers & reckless.
I'd love to know what alternative therapies she was hoping would work.

MrsDeVere Sun 09-Dec-12 16:11:00

She was hoping the chemo would work.
Hardly an alternative therapy

5madthings Sun 09-Dec-12 16:11:43

She's not bonkers or reckless, she is a mothet in an.impossible position to decide what is best for her child.

Try living a day in her life before you judge!

5madthings Sun 09-Dec-12 16:12:46

((mrsdevere and expat and egdar))) hugs and much love to you all, threads like these must be incredibly hard sad

No you can't call her reckless (and bonker is just very, very rude). Reckless would impy she doesn't care about the consequences when it's obvious that she cares utterly and entirely about the consequences.

Blu Sun 09-Dec-12 16:32:03

Good lord.

The thing I would not wish on any parent is the decision which has no 'good choice'. The decision where whichever way you go, there is pain, suffering, guessable but unknowable outcomes, both of which will have potentially frightening consequences.

The minutiae of the condition, treatment and respective prognoses will be detailed, and not published in the news. We can't judge. We can't judge ebcause we don't have the info, we can't judge because thankfully most of us have not been in the horrendous place these parents are in.

Let's not form any opinion of the parents, let's not call them any names, and let's not make asides about the children's names. I very much doubt those names would have had asides made about them if they were, say, James or Esme. angry

expatinscotland Sun 09-Dec-12 16:35:36

What's hard is that, because so little money is directed into research of brain tumours and cancers in paeds, plenty of children DIE from them after going through months and sometimes years of horrendous treatments or die because no treatment is available to them in the UK and they don't have the money to go abroad until they're very sicks, or die because the treatments that are available don't work and there just isn't as much interest in cancer in kids to generate the vast amount of funding that's needed to give more children a chance to live.

How on earth can anyone say this poor woman is 'bonkers', no she isn't!
She will be going through hell on earth, watching her little boy suffer and not knowing whether he is going to get better.
So she should question the treatment, after all he's here child.
It doesn't sound as though this case was handled well at all.
((Hugs)) to all mothers & fathers that have lost their dc to cancer sad

expatinscotland Sun 09-Dec-12 16:45:52

Edgar, I didn't Google much about A's leukaeamia until after she'd died, the initial results were bad enough sad.

TrazzleMISTLEtoes Sun 09-Dec-12 16:46:33

expat DS has neuroblastoma. Although we're only just finishing COJEC, 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. Fingers crossed for some progress.

And thanks for the info on the Neuroblastoma Alliance. I have found them to be very helpful.

expatinscotland Sun 09-Dec-12 16:55:03

'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.

sad

TrazzleMISTLEtoes Sun 09-Dec-12 16:57:55

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.

TrazzleMISTLEtoes Sun 09-Dec-12 16:58:35

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

ithaka Sun 09-Dec-12 17:19:10

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.

MrsDeVere Sun 09-Dec-12 17:28:39

trazzles I have been thinking about you and your little boy.
Often.

TrazzleMISTLEtoes Sun 09-Dec-12 17:46:32

Thanks MrsD

Xenia Sun 09-Dec-12 18:21:33

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.

TrazzleMISTLEtoes Sun 09-Dec-12 19:21:30

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.

EdgarAllanPond Sun 09-Dec-12 19:36:35

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.

Pantomimedam Sun 09-Dec-12 19:39:55

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.

EdgarAllanPond Sun 09-Dec-12 19:39:56

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

expatinscotland Sun 09-Dec-12 20:21:34

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 Sun 09-Dec-12 21:00:35

In the beginning it is pretty much a 'no brainer'. Your child is dx with a disease that will kill them if you do not accept the treatment offered.
I trusted the doctors and I do not feel my trust was misplaced.

The decisions came later on. When the chances were almost 0%.
People always say they would do anything, keep trying, whatever the cost.

But they have no idea.

My daughter endured hideous pain and dreadful side affects. The treatment open to her once she relapsed was one that had almost killed her previously.

We decided that it was not worth the risk. She and her mum and dad decided that we would rather be at home when she died. I did not want to risk the alternative and she had had enough.
She wanted her body back.

So that is what we did. We can never know if that last ditch attempt would have saved her. At the end of those two terrible years I thought not. I had seen so much and learnt so much. I did not know as much as her consultant but I SURE as hell knew more than doctors on a new rotation who had no experience of peadiatric oncology.

Me, with 5 o'levels, knew more about A.L.L. and chemotherapy [applied to my child] than someone who had gone through public school and a top university. No way a junior doctor could have told me what to do. Not after two years as an oncology mother. I was the expert in my child's leukemia.

This thread has been mainly sympathetic and understanding but some of the discussion I have seen on the internet have been shocking. Some people seem incapable of thinking on anything but the shallowest level.

5madthings Sun 09-Dec-12 21:21:15

(((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

TrazzleMISTLEtoes Sun 09-Dec-12 22:17:29

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.

MrsDeVere Sun 09-Dec-12 22:28:05

I hope you know trazzles that I am always here if you want to talk and you think I can be of any help at all.

I wish your lovely boy all the very, very best for a full recovery. It does happen. I KNOW it does.

TrazzleMISTLEtoes Sun 09-Dec-12 23:31:54

Thanks ((unmumsnetty hugs))

bissydissy Mon 10-Dec-12 04:02:11

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.

bissydissy Mon 10-Dec-12 04:03:27

Sorry told conventional treatment has nothing MORE to offer

bissydissy Mon 10-Dec-12 04:11:35

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.

Xenia Mon 10-Dec-12 07:11:23

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.

MrsDeVere Mon 10-Dec-12 07:36:36

I don't think your post was out of place bissy or stark.

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!

expatinscotland Mon 10-Dec-12 09:04:03

'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 sad. 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.

Xenia Mon 10-Dec-12 11:24:46

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.

renaldo Mon 10-Dec-12 11:40:09

the issue here was the parents not agreeing and the mother refusing to attend appointments. She, as the mother has the right to refuse treatments to her child and that would be respected unless there was compelling evidence otherwise. DH is a consultant and a medico legal expert and says there must be more to it than reported as parents make the judgement not to continue treatment every day and that is supported.

expatinscotland Mon 10-Dec-12 14:40:47

Correct, Xenia. The mother has stated that he will be re-scanned this morning to determine if he's suffered a relapse and if so then she will consent to radiotherapy but if not, she wishes to take the child to Germany for treatment.

here

Three proton therapy centres which can treat children are set to be opened in London, Manchester and Birmingham in the next year, so hopefully children who are candidates for this (too young for radiotherapy, usually), can be treated in the UK instead of having to go abroad.

GlitterySparklyBaublesOfDoom Mon 10-Dec-12 20:30:07

I must confess to being a bit wary returning to this thread following my ill thought out initial post and inadvertently upsetting people, particularly Mrs Devere and Expat which is the very last thing they needed and for which I apologise again. No excuse at all but I had perhaps had more wine than I should have when I posted.

Northernlurker put it far better than I did in my very badly worded post. Radiotherapy does have a place in the treatment of paediatric cancers and I would hate for anyone to decide against it purely because they had heard only the worst case scenario potential side effects. Yes we were warned about them but we had no choice really, chemo was not a treatment option for brain tumours back then and fortunately DS only suffered fairly minor ones as bad enough as they were. I did forget to mention he needed growth hormone injections for 2 years as the radiotherapy did affect his thyroid. He still needs to take thyroxine and will for life as his thyroid never recovered.

But Xenia, they are doing research into the long term effects of radiotherapy. DS has been monitored for years and has taken part in all sorts of research, admittedly none of it yet published. One of the studies he took part in had a timescale of 20 years so they could measure IQ over time, academic achievement etc. He is still on annual check ups 17 years later, did and does various cognitive function tests and has a heart and lung scan every year to check for any long term damage as he had radiotherapy to the spine as well as his head.

But as others have said it is a blunt instrument in that it destroys healthy tissue - the fast growing healthy cells along with the cancer cells - which can be very damaging for a young child. We were obviously very, very lucky and I will never take that for granted.

I wish the little boy and his family all the best and if he needs radiotherapy then I hope he comes through with the minimum of side effects and that it works. It is a decision I would not wish on anybody.

dikkertjedap Mon 10-Dec-12 20:39:20

Glitter you may want to read 'Bad Pharma' written by Ben Goldacre with help of the Cochrane Foundation.

It is chilling. Especially as people expect that when they consent to take part in medical research this research actually would get used to the benefit of others. Unfortunately if the research outcomes do not suit big pharma companies it is unlikely to get published. This is very serious as it distorts the data available to doctors about what works and what doesn't work. Say there are 10 big trials for drug X. Seven of the trials show that the drug does not work or has serious side effects and does positive harm. Three trials show that the drug works (possibly by stopping the trial mid way before the harm becomes evident). Only the three positive trials will be reported (not necessarily published as that would open them to scrutiny).

It is really difficult to get reliable information about what works and what doesn't as a lot of information which doesn't suit pharmaceutical companies gets suppressed which totally skews the information available. This is a huge problem which would need a big political effort worldwide to change this.

GlitterySparklyBaublesOfDoom Mon 10-Dec-12 20:59:58

Thanks dikkertjedap tis already on my massive reading pile.

Radiotherapy has nothing to do with pharma companies though. It is administered by the hospital radiographers and doesn't involve any drugs so drug trials aren't an issue.

Other than that I wholeheartedly agree. My own GP thankfully has refused to prescribe me medication - I won't name it, don't want to get sued - because he didn't believe that it had been properly tested/trialled. Have read about some people having horrendous side effects so I'm rather glad about that now.

MrsDeVere Mon 10-Dec-12 21:11:36

Glittery please do not feel you shouldn't return to the thread on my account. As someone who has experience of the issue you have a lot to offer this debate.

I feel that the mother was presented with what she saw as a confusing situation. She believed she had been told that the cancer had gone and then she was told that the preventative 'just in case' treatment was highly risky.

I think (and I can only conject) that if the surgery had been less successful and she was faced with a true life and death situation, that she would probably have gone ahead with the treatment then. As we all probably would.

It has long been known that how information is presented by medics makes a huge difference to those receiving it. This may sound obvious but I do not think many people realise how far reaching this difference is.

I remember a study done into how parents were told that their children were Deaf. Those that were presented with accurate, appropriately positive and clear information not only took the news better but suffered much less depression.
Parents who were given information in the 'wrong' way reacted as if they had been given a terminal diagnosis (in some cases).
Many years later the affects (both positive and negative) were being felt many years after diagnosis.

GlitterySparklyBaublesOfDoom Mon 10-Dec-12 21:15:20

But.. drug trials do have a place. Had we been offered one in a potential last chance scenario we possibly would have tried it. I can't say that for sure though. There always has to be a balance between quality of life and longer survival at any cost. I just hope that we would've acted in DS's best interests had we been faced with such a dreadful decision.

There are a lot of very effective drugs out there though and all have had to be tested/trialled at some stage. No doubt there will alway be a few ineffective/potentially harmful ones that get through due to skewed research.

GlitterySparklyBaublesOfDoom Mon 10-Dec-12 21:28:41

Just embarrassed that I was such an insensitive plonker Mrs Devere and rightly so. I don't know what came over me - other than copious amounts of red wine blush - I don't think I've ever been such an arse on a thread before and I'm in no hurry to ever repeat it.

And I totally agree with your reading of the situation. I think I misunderstood that her DS was going to have chemo, which wasn't an option for my DS. I interpreted it that she only wanted him to have surgery and then alternative therapies. Which of course would be her right as a parent to make that decision if she felt it was best but wouldn't necessarily give him the best chance of long term survival.

And yes you are right. It matters very much how information is presented and makes an enormous difference. If a doctor had told us that we would be frying DS's brain then we also probably would have considered not going for the radiotherapy. If the doctor really did say that then he/she needs to consider another line of work.

dikkertjedap Mon 10-Dec-12 22:10:14

Of course drug trials are hugely important. In many situations new drugs are the only hope on a cure.

However, it is crucial as clearly pointed out in Ben Goldacre's book and before him on many occasions by the Cochrane Foundation that ALL drug trials are fully reported, positive and negative. This reduces the risk of unnecessary or even harmful drugs entering the market without doctors knowing.

MrsDeVere Mon 10-Dec-12 22:19:05

Come on glittery don't beat yourself up!
This is a subject very close to your heart fgs.

I was very taken aback at your post but mostly because it was so out of the blue.
Its over now and you have had the grace to apologise and explain. That is enough for me.

These sort of news stories are bound to bring up all kinds of stuff for parents like us. I have been pretty surprised at just how upsetting I have found the whole thing if I am honest.

GlitterySparklyBaublesOfDoom Mon 10-Dec-12 22:42:49

I know, you are right and I have pulled myself together. The little boy has the same tumour that DS had - medulloblastoma - which is probably why I lost the plot somewhat.

It is an interesting debate though and the choices us parents are given are often very stark and horrible but yes, it is exactly how it is described and explained that often makes the difference. A doctor who takes time to explain all the ins and outs and possible side effects and their likelihood of success or failure is worth their weight in gold against one who just tells you what they think you should or should not do.

Rather than issues like this though, where it is purely parental choice, what angers me most - and where any further ranting I do will be directed - is that children are still being given late diagnoses for cancer, particularly for leukaemia and brain tumours as the symptoms can be misread so easily for other much less serious illnesses and that GPs are so often not referring them early enough. Not an issue in our case, our GP was fab, it was the registrar at the hospital that was a fuckwit. Although this is probably an issue for other children too.

But it is uneccessary late diagnosis that really makes me cross. Alongside the lack of any serious investment into research into paediatric cancer. And you are all no doubt fully aware that research is based massively on charitable donations rather than government funding. And that stinks.

Xenia Tue 11-Dec-12 15:28:26

The Government wants to make all publicly funded drug trials public even if they show the drugs are useless. www.guardian.co.uk/technology/2012/nov/20/pharmaceutical-research-open-access

This is slightly a side issue.

The bigger issue on a thread is when can a parent go against medical advice.

dikkertjedap Tue 11-Dec-12 15:41:32

I agree Xenia, it is a side issue.

One of the problems is that medics don't necessarily all agree with each other. Also, even doctors don't always have access to all relevant information.

dikkertjedap Tue 11-Dec-12 15:42:00

Xenia, thanks for the link BTW.

DrRanj Wed 19-Dec-12 08:41:52

Have you read that this boy's tumour has now come back and the mother is still refusing to let him have surgery? One wonders whether it would have come back if there hadn't been a delay in his radiotherapy.

I am all for patients having autonomy over their treatment, but it makes me sad and angry when parents make badly informed decisions about their child's health against medical advice, which is based on evidence.

MrsDeVere Wed 19-Dec-12 10:22:28

Of course it would.
It was only delayed by a few fucking days.

The cancer never went away.

He s having his treatment now. They are talking about 85% cure. Bollocks.

dikkertjedap Wed 19-Dec-12 21:34:16

DrRanj I would like to highly recommend Ben Goldacre's book 'Bad Pharma' to you as well. Unfortunately we have a long way to go before we truly have evidence based medicine.

I don't think that anybody can say that the cancer has come back because of the delay in radiotherapy. As MrsDeVere already pointed out, in all likelihood the cancer never went away. Cancer is still a killer, especially these types of cancer. I also do not understand where the 85% cure rate comes from and I doubt that it is based on sound data (if it is, I would love to see it).

MrsDeVere Wed 19-Dec-12 21:49:39

Its actually less than 5% for recurrent 'this type of cancer'. (according to some studies)

I am sorry for being so blunt DrRanj. I just find this sort of speculation distressing.

Wingedharpy Fri 21-Dec-12 02:41:52

"One of the problems is that medics don't necessarily all agree with each other."

And in this case, neither did the parents which would make it an impossible situation for the health care professionals trying to treat this little boy.

pumpkinsweetieMasPudding Fri 21-Dec-12 13:34:45

Watching the news now, i take it back the woman is a nutter!

MrsDeVere Fri 21-Dec-12 15:46:28

Really?
Tbh I am avoiding the whole thing.

She may well ave issues and this has pushed her over the edge. Who knows?

NilentSight Fri 21-Dec-12 22:09:47

Very, very glad that the judge has ruled in favour of the doctors and the childs father. Wishing Neon a full and speedy recovery.

5madthings Fri 21-Dec-12 22:20:45

i am not sure what to think, i hope the treatment helps the boy, but my understanding is this is about prolonging his life, not a cure? the cancer has already reoccured and quickly as well which is not a good sign. he may get 5 years of life, but if he is constantly having treatment for a lot of that time then it may not be the best quality of life. awful awful situation for the family sad

Highlander Fri 21-Dec-12 22:54:05

5 years? That poor kid will be lucky to see Easter sad

5madthings Fri 21-Dec-12 23:01:56

The papers keep saying 80% chance of living five years if he has the raduotherapy but i dont think that is very accurate? Esp guven he has already relapsed?

Its awful and some of the jydgemental.comments o line are horrid. I have just argued with friends of a friend on fb. People are seeing the 80% figure as an 80% chance of cure but that is not the case at all.

I am right in my understanding that the treatment is to halt the spread of the cancer and to extend his life but ultimately they cannit 'cure' him. He is going to die but uts a matter of when?

The thought of going through this is heartbreaking. No parent wants their child to die but equally months of a gruelling treatment that may cause suffering is not a nice option sad

AmberLeaf Fri 21-Dec-12 23:38:18

This wont cure him will it?

Id back any family member who wants to just let him 'be'

AmberLeaf Fri 21-Dec-12 23:39:34

Horrible situation for his parents and I judge neither of the TBH

NilentSight Fri 21-Dec-12 23:49:20

I have only read about the case on the BBC website and nowhere have I read that the childs condition is terminal and that radiotherapy is purely palliative with a very short prognosis. I cannot begin to imagine the agony that his parenst have faced but I am not sure that the medical teams and childs father would have gone so far with their legal challenge IF his prognosis was so limited.

expatinscotland Fri 21-Dec-12 23:56:29

Plenty of people who originally had an 80% chance of cure still die. This may have also been the original figure. My daughter's original prognonsis was fair, until the cytogenetics came back and the induction round of chemo, whilst remitting her morphologically, very well (from 60-3% leukaemia) failed to remit her of a particularly damning genetic abnormality. This figure then dropped to terminal without stem cell transplant. We punted for it, of course, her risk of death was calculated at 15%. She died.

Her risk of relapse, even give successful transplant, was still over 50%.

But if her case had gone to press I'll wager London to a brick all that would have been seized on what her initial odds, which were useless.

GlitterySparklyBaublesOfDoom Sat 22-Dec-12 00:06:13

Yes of course it could cure him. My DS had the same tumour in 1995. He was vey seriously ill before he had surgery and then radiotherapy. He's here now aged 25 and he graduated from Uni last year with an Honours degree.

5madthings Sat 22-Dec-12 00:06:37

Thankyou for that explanation expat

Neons cancer has already recurred, hence the resent operation? That in itself is not goid. It us a particularly aggressive cancer from what i have read and the 85% figure is the chance of him being alive five years from diagnosis. Not an 85% xhance of a cure. From what i have read had he stayed in remission for two years his idds would have been.better, but that has sadly not hapoened.

As ever the press are picking and choosing what and how to report this story.

It is horrible for all involved. I think those condeming his mother should be ashamed.

T h tho i agree it is a worthy discussion i do think.some form of annonymity for the family would be preferable.

dikkertjedap Sat 22-Dec-12 00:07:31

For those who like to understand more about medulloblastoma, treatment, trials and survival rates. The mother is damned if she does and damned if she doesn't. It is heartbreaking.

5madthings Sat 22-Dec-12 00:09:21

glitter they were saying it coyld cure him.before he relapsed but as he has alreasy had a reccurrance of the tumour the cgances are now very slim?

There are many differing versions and information available it seems. I am pleased it worked for your son, this case must bring bacl horrible memories sad its very difficult for many mnmnetters.

GlitterySparklyBaublesOfDoom Sat 22-Dec-12 08:26:27

Just realised about half of my post didn't appear. I also meant to say that they usually start radiotherapy 6 to 8 weeks after surgery so the court case won't have made much difference in terms of delay. As for the tumour regrowth, I honestly don't know as we were extremely fortunate in that didn't happen to DS. If they do believe that they have managed to remove it all now then radiotherapy and chemo could cure him and stop the thing from ever growing back again. Or not. It is a gamble and as a parent you can only try to make the best decision for your DC based in the advice the medics give.

Yes 5madthings there are too many MNers who have and are going through this. It's shit!

labtest Sun 30-Dec-12 23:17:39

I realise I am late to this thread but have just come across it. I really feel for this mother. My daughter was diagnosed with acute lymphoblastic leukaemia in June 2011 at the age of 4. Despite being informed that her odds were very good (being a white girl under the age of ten) my first instinct was that I didn't want to put her through treatment. I couldn't bear the thought of her enduring chemo and hair loss, sickness etc. to make matters worse, she was not ill and had been diagnosed after complaining only of a sore hip, so I felt that by putting her through treatment I would be the one making her ill. Nonsense I know but logic had evaded me at this point. Of course she did have treatment, it's ongoing til September 2013 but I can totally understand why a parent would resist, particularly when it can be damaging and results are not guaranteed. This mother is not a nutter, she is not uncaring. She loves her son and is terrified for him. I hope for the best outcome for him and peace of mind for her.

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