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  1. #31
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    Can't keep up with this discussion...
    On Google. ..googling information is not the root of all evil. Even my DD'S paediatrician tells me to Google sometimes. Without Google I would not know half the stuff I do about my daughter's syndrome. And flagged the info to her doctors.

    5 years is a long time for a young child to suffer. His life is hospital. Doctors. Treatment.
    It's heart breaking. I've been through such a tiny amount (with more to come and lots of unknowns) of surgeries anz treatments. Watching your child suffer. .with tubes and wires and not even being able to hold them is awful.
    I'm not sure of the background of this family. .but I can understand why they may have made the decisions they have. no one can know this heartbreak unless you've walked in their shoes.
    Stop judging from your own safe little world. We should be feeling compassion. I'm not saying I agree with their decision or disagree. .but they need compassion and care. .not judgements. They are losing their son. It's beyond imaginable. So awful.

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  3. #32
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    Gosh, I just can't help but feel such compassion for the parents. I didnt watch 60 minutes, but I read the story last week. Whether I agree with their decision or not, or wouls make the same choice or not.... I cannot imagine the pain and suffering of having a child dying. I don't know how I would even survive pain that deep.

    That being said... I wouldn't be able to help but hope for a miracle. If my child was given a 50% chance, I would grasp on to that 50%. I just wouldn't be able to give up hoping.

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  5. #33
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    Quote Originally Posted by VicPark View Post
    I was emotional at what the poor boy is going through and am passionate in thinking the parents have made the wrong call. I thought I was tame. Maybe not tame enough for you. Is there any reason in particular that this resonates with you? I'm not going to agree with you just because you're upset. But I can tailor my approval if there are particular personal sensitivities.

    Can you accept though that someone (and a team of doctors.... And a judge) disagrees (passionately) with you on this topic?
    I'm not talking about what the team of doctors and judge have decided. I'm talking about your personal comments on the matter.
    This resonates with me because I watched my FIL go through chemo and it was a living nightmare. He had a good chance of survival, and is a grown man. It was the worst thing I have ever seen anyone go through. And he knew he would most likely get through it, and was an adult who knew what was going on.
    I have a 6 year old DS. I wouldn't put him through years of what my FIL went through for 5 years when he would almost definitely die at the end of it. Others might, that's their call. I don't think I could do it. If someone took that choice away from me it would be my worst nightmare. If people then started calling me deranged and selfish because of my choice it would probably tip me over the edge.

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  7. #34
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    Quote Originally Posted by VicPark View Post
    I think the parents absolutely had their kids best intentions at heart but made a call that was not in their sons best interests. I can't be that off base of a team of medical professionals and a judge agrees.
    I really think it depends on how you define 'son's best interests'. I can't cope with delving into the whole thing too much, but the difference I see is that medical professionals by default have the mindset that they will try everything they can until they can't anymore. That's what we expect from them, and what they are trained for.

    But, and I'm not saying here for one second that they don't care about their patients, when we are treated by professionals we are 'cases'. There is a reason they are supposed to be neutral and unattached to the best of their ability, so they don't have to be bogged down by examining what may be best morally and emotionally in individual cases.

    Their interest is in 'solving/curing/healing', and they make decisions based on the assumption that that is what is right and what everyone wants.

    We (as in not the medical professionals), however, have the right to refuse treatment. There must be a reason that that right exists. I believe that it is because the choice for what is best for us actually lies within us.

    While I get where you are coming from to some degree, I think you are imposing your values of what's best onto a situation that you fortunately aren't living through.

    Either way, I think it SHOULD be up for debate. The part here that's hard to swallow is the fact that it is a child, and as parents I imagine we all believe we would do everything we could to keep our child alive. But perhaps it's not so black and white when you have to consider factors such as quality of life, and whether it's selfish to keep someone with such a poor prognosis receiving such debilitating treatment so we can have more time on this earth with them. It's devastating to think about.

    I can't be sure what I would do, but I stand behind that family and the heartache they are enduring simply because I can't be sure.

    Very muddled, I hope that makes sense.

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  9. #35
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    Quote Originally Posted by cheeeeesecake View Post
    Gosh, I just can't help but feel such compassion for the parents. I didnt watch 60 minutes, but I read the story last week. Whether I agree with their decision or not, or wouls make the same choice or not.... I cannot imagine the pain and suffering of having a child dying. I don't know how I would even survive pain that deep.

    That being said... I wouldn't be able to help but hope for a miracle. If my child was given a 50% chance, I would grasp on to that 50%. I just wouldn't be able to give up hoping.
    But it's a 50% chance of living another 5 years of pain, not a 50% chance of a long and happy, healthy life.

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    I do not like the way she (mother) described chemo/radiation but in this instance I would want my child to have a short happy life rather than a 'possibly prolonged for 5 years' life that would be full of more pain and sickness.

    Edited as I am pretty sure I wrote some complete BS....
    Last edited by twinklify; 10-04-2016 at 22:51.

  11. #37
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    @harvs thank you for that, it is so true.
    I am in no way an advocate for 'alternative therapies'. I get angry at non vaxxers and homeopathy and lots of other things too. But medicine isn't faultless. Many within the medical profession will freely admit that medicine is too preoccupied with prolonging life, not with quality of life. With an ageing population there is increasing discussion about how the medical profession needs to focus more on palliative care instead of simply prolonging life as long as possible. That's what I feel has happened here- the doctors and judge have put the sanctity of life above the quality of that life.

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  13. #38
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    Quote Originally Posted by FearlessLeader View Post
    I'm not talking about what the team of doctors and judge have decided. I'm talking about your personal comments on the matter.
    This resonates with me because I watched my FIL go through chemo and it was a living nightmare. He had a good chance of survival, and is a grown man. It was the worst thing I have ever seen anyone go through. And he knew he would most likely get through it, and was an adult who knew what was going on.
    I have a 6 year old DS. I wouldn't put him through years of what my FIL went through for 5 years when he would almost definitely die at the end of it. Others might, that's their call. I don't think I could do it. If someone took that choice away from me it would be my worst nightmare. If people then started calling me deranged and selfish because of my choice it would probably tip me over the edge.
    People don't have to agree with you. VP has not said anything nasty in any of her posts.

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    Quote Originally Posted by FearlessLeader View Post
    But it's a 50% chance of living another 5 years of pain, not a 50% chance of a long and happy, healthy life.
    I know, and I get that. I guess though,I would think 50% to 5 years. At 5 years, then we take the next step, face the next hurdle. I just dont think I would be able to give up hope. I know people who have died of cancer too quickly after diagnosis. I also know people who all the dr's said wouldn't survive for 6 months, & they would suffer greatly.... & they've lived another 10 years & are doing really well &are thriving. I would just have to hope my child might be one of the ones who are a miracle. But again, I don't feel judgement for these parents. I feel immense compassion.

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    Quote Originally Posted by Blessedwith3boys View Post
    People don't have to agree with you. VP has not said anything nasty in any of her posts.
    In what universe is calling grieving parents ideologic bleeters not nasty?

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