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  1. #81
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    Quote Originally Posted by cheeeeesecake View Post
    I also think we as a society are so terrified by any form of disability. I find that really sad.
    I could thank this 1000 times. I actually wanted to make a point of this, but my wording was a bit harsher so I refrained.

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  3. #82
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    I'm not sure how I feel about this story... I think the parents are making the wrong decision, but I think it's pretty rough that they are being forced into this now. However I do think that the child needs to have someone stand up for them if the parents are making the wrong decision. Very complex!
    I feel for the parents as they are the ones having to support the child through the side effects.
    But he has a 30% chance just with chemo (which is what is court ordered at this point in time). He HAD a 50-60% chance with chemo and radiation, it is now 50% because the parents have buggered around for so long, delaying things and not turning up to appointments. I really disagree with how they've done that. The mother originally wanted to delay chemo for 6-8 weeks while she trialed alternative therapies. That is just ludicrous really. You can't delay these things, every day counts.

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  5. #83
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    Quote Originally Posted by Kaybaby View Post
    Except a 50% chance of survival is actually a pretty good survival chance? I have no comprehension how, a parent could not choose that chance for their child?

    My niece was diagnosed with a liver cancer with a tumour the size of an orange at 4 mths old, and with chemo and surgery to remove 70% of her liver was given a 60% chance of survival (and that means still alive in 5yrs). The first 2 yrs of her life were hell, and on several occasions she almost didn't make it, as the treatment was so aggressive.
    Today, she is a delightful, rambunctious 7yo little girl. She has some issues as a result of her treatment (some developmental delays and hearing loss etc from the chemo). She is terrified of medical professionals...but she is alive and thriving. I'm pretty sure my niece would say she is glad he parents took that chance with her, despite how traumatic and how poor her quality of life was for a while..

    Dr's choose palliation for child patients all the time, in this case they believe the child has a reasonable chance....Surely he deserves that chance?
    I'm sure I read that it had been reviewed to a 10-30% chance of survival after the surgery. Their child is already pretty significantly *permanently* disabled from the surgery. Chemo will make their child very unwell, and radiation therapy for this particular tumor can result in further significant aquired brain injury. Their child has already been terrified by the hospital experiences. From my (very limited) understanding that type of tumor, and by extension treatment of thay area, impacts on basic bodily functions. And those impacts are also permanent.

    A 10-30% chance of survival for 5 years with significant permanent disabilities is very different to a 50% chance of survival, with the assumption that the already reduced quality of life is not any further reduced. Given the former, making the decision for *myself* (not for my DS, because I honestly don't know what I would do, and I cannot bear to think about it), I'd refuse treatment.

    I'm not saying that the child doesn't deserve every chance. All I am saying is that they've weighed every factor that impacts on their child with the information that they have. Death in a month after a happy time filled with as much love and comfort as they can provide, with as much dignity and enjoyment, and working on palliative care to reduce pain. Or living with significant permanent physical and mental disabilities, reduced quality of life, with no guarantee of time frame, even with the love and comfort. Seems to me that either choice is pretty damn terrible, no?


    ETA - I haven't read the transcripts. I just can't do it. As I said, my uncle's current situation is colouring my perspective. And my mental health is none too stable at the moment anyway.

    Also, just read the other comments. I feel the need to point out that I'm not making a judgement on whether they've done the right thing or not. That's not for me to decide. It's also not right for the general public to hurl the sorts of comments that they're hurling. Pretty sure they love their children and genuinely feel they're acting in their best interests. If it was me in the same decision immediately post surgery - I wouldn't make the same decision as them, but that's what's right for me and my family.
    Last edited by Tiny Dancer; 11-04-2016 at 11:47.

  6. #84
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    I think a lot of it comes down to how much you value a life. Especially the life of someone with a disability. I personally feel that a life of a disabled person is 100% equally as worthy as a life of someone free of disabilies. It wasnt that long ago that autistic children were euthanised in institutions, now we look back on that in horror.

    I recently watched a Louis Theroux doco about the prolonging of life. It was about keeping people on life support,even if they were never to recover. One man was in a vegetative state, & his family was told that there was absolutely 0% chance he would ever wake up. He had no brain function. His family were urged to turn off his life support, they refused. They believed he would wake up,even though the dr's said it was impossible. Within weeks, the dr was crying with amazement and joy when she saw him talk to his family. He was walking and talkig and functioning normally within weeks/months after that. The dr's couldnt explain it. It would have surely been a long, hard road for him to recover - but is his life less valuable, because he had to work for it? Because he had to fight for it? I guess for me, I wouldnt be able to stop fighting for my child. Even in the face of chemo,hearing loss,etc - I would fight until all hope was gone.

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  8. #85
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    Unfortunately the child survival rate was decreased to 30-40% due to the parents refusing treatment and the growth of the tumour in that time. Have you read the court transcript? There is no indication the boy already has significant disability, but is terrified (understandable). The disability is likely to be caused by radiation therapy. The court ruling is about chemo only, after which the childs situation and life expectancy and prognosis will be reassessed by the Dr's and court..

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  10. #86
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    Quote Originally Posted by Kaybaby View Post
    Unfortunately the child survival rate was decreased to 30-40% due to the parents refusing treatment and the growth of the tumour in that time. Have you read the court transcript? There is no indication the boy already has significant disability, but is terrified (understandable). The disability is likely to be caused by radiation therapy. The court ruling is about chemo only, after which the childs situation and life expectancy and prognosis will be reassessed by the Dr's and court..
    No, kaybaby, I must have just edited the post to add my other thoughts as you wrote this. I can't read it. I'm not in the best place for my own mental health, and with my uncle being so unwell with a brain tumor (his prognosis gave him til May), I just can't do it at the moment.

  11. #87
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    Quote Originally Posted by Tiny Dancer View Post

    I'm not saying that the child doesn't deserve every chance. All I am saying is that they've weighed every factor that impacts on their child with the information that they have. Death in a month after a happy time filled with as much love and comfort as they can provide, with as much dignity and enjoyment, and working on palliative care to reduce pain. Or living with significant permanent physical and mental disabilities, reduced quality of life, with no guarantee of time frame, even with the love and comfort. Seems to me that either choice is pretty damn terrible, no?


    ETA - I haven't read the transcripts. I just can't do it. As I said, my uncle's current situation is colouring my perspective. And my mental health is none too stable at the moment anyway.

    Also, just read the other comments. I feel the need to point out that I'm not making a judgement on whether they've done the right thing or not. That's not for me to decide. It's also not right for the general public to hurl the sorts of comments that they're hurling. Pretty sure they love their children and genuinely feel they're acting in their best interests. If it was me in the same decision immediately post surgery - I wouldn't make the same decision as them, but that's what's right for me and my family.
    I agree for the most part with what you are saying....and Dr's and parents make palliative care decisions every day. Believe me, paediatric oncology Dr's don't make these decisions lightly, and they obviously have strong belief this child has (or had) a reasonable chance - this is the first time in WA a court has had to make this ruling - indicating how rare this circumstance is.

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  13. #88
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    Quote Originally Posted by Tiny Dancer View Post
    No, kaybaby, I must have just edited the post to add my other thoughts as you wrote this. I can't read it. I'm not in the best place for my own mental health, and with my uncle being so unwell with a brain tumor (his prognosis gave him til May), I just can't do it at the moment.

    Hope you're ok TD. Cancer is a horrific thing, which effects that spread far beyond the sufferer...
    I can absolutely see why this would be so difficult for you. Hang in there xx

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    Quote Originally Posted by cheeeeesecake View Post
    I also think we as a society are so terrified by any form of disability. I find that really sad.
    It is sad, but at the same time I don't think there's anything wrong with being terrified. After all, some disabilities significantly impact the time that you will be caring for your child. It's all well and good to be able to care for them when we're still young ourselves, but it's not so easy once the parents start ageing, and it can be scary to think about who cares for them in the future.

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    Default 60 minutes: court order treatment for child

    Quote Originally Posted by atomicmama View Post
    It is sad, but at the same time I don't think there's anything wrong with being terrified. After all, some disabilities significantly impact the time that you will be caring for your child. It's all well and good to be able to care for them when we're still young ourselves, but it's not so easy once the parents start ageing, and it can be scary to think about who cares for them in the future.
    I agree completely. My close friend has a child that will never live independent. Her parents life is made up almost entirely of decisions around who will take care of her when they are gone. They even had another baby to make sure the burden didn't fall on their only other child.

    There are massive ranges of disability and it's unfair to say people don't want a disabled child because they don't value that child's life. There are so many factors that are relevant.
    Last edited by Sonja; 11-04-2016 at 12:11.

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