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  1. #41
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    Fearless leader...I just want to say thank you for your posts tonight. You have saved me so much typing. I agree with everything you have said.

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  3. #42
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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.
    5 years of pain! How do you know that will be the case? If treatment was successful he may not need to have it as long and he may live longer than anticipated.
    A good friend of mine is now in remission when she was told she would only have a max of 5 years, treatment was more successful than expected and 2 years on all is still going well.
    I certainly wouldn't and couldn't deny my son treatment and let him die when there is treatment available and hope.

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  5. #43
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    Quote Originally Posted by Tamtam View Post
    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.
    I know it's not the same thing at all but having a prem bub and then going through some significant treatments myself, I honestly understand wanting to spare your child from such invasive, brutal treatments for a 50% chance at living five years.
    As a grown woman, my treatment would bring me to my knees at times. I cannot fathom what this family must be enduring.
    I haven't watched the 60 minutes episode because that goes against my religion but I just wanted to say thanks for sharing your experience and thoughts @Tamtam
    Last edited by misskittyfantastico; 10-04-2016 at 22:57.

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  7. #44
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    Quote Originally Posted by VicPark View Post
    I really don't want to further inflame things however feel I must mention that I just read the mother is a naturopath. May offer an explanation as to why she's relying on google instead of the advice of trained medical professionals.
    Ok. Wow. You went there. How dare you insinuate that being a naturopath means you 'rely on google and not the advice of trained medical professionals'. Are you suggesting the profession is a whole lot of rubbish? What do you think naturopaths do?

    Yes, I do not agree with her wording/views on chemo/radiation but do not insinuate that on an entire profession.

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  9. #45
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    FearlessLeader is offline Winner 2013 - Most Memorable Thread
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    I always shake my head at anyone who derides Google. I use google every day, as a qualified librarian, to find important information. Google isn't just for LOLcats and conspiracy theories. if you actually know how to search properly it's one of the very best tools of research. Anyone in the top of their field at pretty much anything will find Google a valuable tool.

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  11. #46
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    harvs is offline Winner 2014 - Spirit of BubHub Award
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    Big hugs @Tamtam. I think you are bloody amazing, and thanks for sharing your perspective x

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  13. #47
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    Quote Originally Posted by FearlessLeader View Post
    I always shake my head at anyone who derides Google. I use google every day, as a qualified librarian, to find important information. Google isn't just for LOLcats and conspiracy theories. if you actually know how to search properly it's one of the very best tools of research. Anyone in the top of their field at pretty much anything will find Google a valuable tool.
    I agree.

    Doctors use google too Everyone better freak out now!

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  15. #48
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    Funny, I am the opposite. I shake my head when people talk about the "research" they have done on Google. I stick to current medical journals. Usually available also online, but generally subscription required.

    As for Naturopathy...no, I personally don't believe it is valid profession. If others do, and want to see a Naturopath, that's their right. As an adult, one is entitled to bodily autonomy, even if it involves stupid decisions.

    But when it comes to children, the waters are very muddied.

    Sent from my SM-N910G using The Bub Hub mobile app
    Last edited by J37; 10-04-2016 at 23:26.

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  17. #49
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    SpecialPatrolGroup is offline T-rex is cranky until she gets her coffee.
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    Deleted.

    It is such an incredibly sad situation and I feel that tabloid "current affairs" are not the best source of information but I do wish this poor little guy all the best
    Last edited by SpecialPatrolGroup; 10-04-2016 at 23:23.

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  19. #50
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    Quote Originally Posted by Full House View Post
    Fearless leader...I just want to say thank you for your posts tonight. You have saved me so much typing. I agree with everything you have said.
    Ditto. I've just read this whole thread and actually have nothing further to add thanks to Fearless Leader.


 

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