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  1. #101
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    Quote Originally Posted by Tamtam View Post
    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.
    This.

    What a tragic thing to have to go through. I can't comment on their particular case but if it was my son, I would get him whatever treatment was advised. I would try to get a 2nd, 3rd, 4th opinion and then go with whatever gave him the best chance of survival. Even if that meant permanent brain damage. Being brain damaged doesn't forfeit your right to live. And there could even be a cure for that in the future, who knows? I just could never let go of my boy, even if it meant years of hospitals, doctors and treatments. But that's just me.

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    cheeeeesecake  (11-04-2016)

  3. #102
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    Quote Originally Posted by Clementine Grace View Post
    This is a really complex scenario and I really think the parents believe they're doing the right thing for their child. I don't think it's fair of this whole debate to dismiss their fears so easily and brand them as stupid.
    I agree the parents believe they are doing the right thing for their child - anyone could tell from the interview that they absolutely love him. I really do get their fears about *possible* side affects - I'm not trying to dismiss their fears, I can see where they are coming from.

    On the third point though I will openly say that I think their decision making is not the smartest - both in terms of their methodology (research methods, weight they put on alternative information) and conclusions. Not smart at all and considering the consequence of their decision making is so dire (their delaying actions have already reduced the chance of their son surviving) I am so glad that people with more sound research, analytical and decision making skills intervened and took the decision out of their hands.

    I still (of course) wish the parents the absolute best. Their gorgeous little boy needs his parents.

  4. #103
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    Default 60 minutes: court order treatment for child

    Quote Originally Posted by DT75 View Post
    Apparently, "your child your choice" only applies some times.
    There are many things parents are not allowed to do this is nothing new (belt their kids, circumcise their daughters, deny their kids an education etc etc). I think the courts call (that parents don't have the right to deny their child a 50-60% chance of likely survival in lieu of death within a month) is in line with society's expectations regarding when the state should intervene in parenting matters.
    Last edited by VicPark; 11-04-2016 at 21:25.

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  6. #104
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    Quote Originally Posted by Little Miss Sunshine View Post
    As I work in aged care I have learnt there is one thing worse than death- that is prolonged surviving. I refer to it as surviving as it isn't living at all.
    Why are people so afraid of palliative care? I know there are compassionate, wonderful doctors out there, but there are also others that are more "treatment" focused than "patient" focused - looking short term and treating the disease or illness but not treating the patient as a whole picture.
    This!!! I know I'd much rather quality of life vs quantity. That's why I have a living will. That's why my family knows my wishes in case of medical decisions being made.

    I once attended a procedure where the radiologist frightened a needle phobic patient into getting an infected hair follicle tested in case it was cancer. The sonographer and I both tried to reason with him saying that the patient couldn't really afford the $300-400 for the completely unnecessary procedure. But to no avail. That idiot doctor still went on to do it

    We had to restrain the patient onto the bed, give her two types of anaesthesia to calm down, completely bruised her underarm... and for what????

    Instead he could have asked her to come back in 4wks for another ultrasound to see if the size of lump had changed.

  7. #105
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    Quote Originally Posted by Rose&Aurelia&Hannah View Post

    I once attended a procedure where the radiologist frightened a needle phobic patient into getting an infected hair follicle tested in case it was cancer. The sonographer and I both tried to reason with him saying that the patient couldn't really afford the $300-400 for the completely unnecessary procedure. But to no avail. That idiot doctor still went on to do it

    We had to restrain the patient onto the bed, give her two types of anaesthesia to calm down, completely bruised her underarm... and for what????

    Instead he could have asked her to come back in 4wks for another ultrasound to see if the size of lump had changed.
    This is not relevant to this thread!


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  8. #106
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    2 weeks ago my 2 year old was diagnosed with a rare cancer of the kidney known as Clear Cell Sarcoma. With chemo, radiation and surgery he has a survival rate of 80% to live a normal life (not just 5 years). He starts chemo this week. In 2 weeks the biopsies, CT's, scans, etc have been very traumatizing for my son and for us to watch. Once he starts chemo, he will have no immune system and could even possibly die from catching a cold.
    I am forever thankful that the cancer is only in his kidney and not his brain like this poor little boy.
    I know some of you right now sitting back comfortably having never experienced any of this know exactly what you would do in this circumstance, give him the chemo!
    It's not an easy decision. I don't even know what I would do.
    Huge amounts of chemo and radiation for that boy to have a horrible life in hospital every day of the week for a 0-50% chance of surviving maybe only 5 years?!?!
    Dunno, think I'd get all the money I could and go on a huge holiday and let him enjoy every day to the fullest until the end....

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  10. #107
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    Quote Originally Posted by xanadu View Post
    I know some of you right now sitting back comfortably having never experienced any of this know exactly what you would do in this circumstance, give him the chemo!
    It's not an easy decision. I don't even know what I would do.
    Huge amounts of chemo and radiation for that boy to have a horrible life in hospital every day of the week for a 0-50% chance of surviving maybe only 5 years?!?!
    And a number of us know about it all too well.

    I had 6 months of chemotherapy last year. It was horrendous. I vomited around the clock. My hair fell out. I was exhausted. My body was black and blue from blood tests and IVs. I couldn't just stay in bed, I had a 1-year-old and a 4-year-old. I had 2 lots of surgery. I had 2 months of daily radiotherapy. My skin burned and ulcerated. It was 12 months of hell.

    But I am still alive. I have gone from 0% 5-year-survival without treatment, to pretty good odds now.

    So that's my perspective.

    Yes, different cancers behave differently, and respond differently to treatment. And, as a doctor myself, I very much doubt this group of senior doctors took this case to court just to get their "jollies". Why would they? They would have honestly believed that the chance of a decent survival outcome, and not a vegetative-survival outcome, was worth the pain and distress of the treatment. And it IS painful, it IS distressing. But life sucks sometimes, and you do the best you can with the treatment and resources possible.


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    Last edited by J37; 12-04-2016 at 06:52.

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  12. #108
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    ^^ I'm always interested to read your thoughts @J37
    I know the parent of this child said something about his fear and terror over the treatments.
    Sadly..that's part of it. I don't think anyone likes it. My DD has been through her fair share and mostly sits through her heart checkups fairly well. But I have friends who have little ones who scream and cry from the very moment they walk in to hospital. They don't even like pulse ox on. And getting through the echo is torture.
    I hold my DD down for regular blood tests. It's very unpleasant to say the least but it has to be done. Short term pain - long term goal.
    Fear of medical intervention shouldn't stop the treatment.
    Though if I had to go through a prolonged period of treatment I don't know what I would do.

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  14. #109
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    Default 60 minutes: court order treatment for child

    Hugs @xanadu and @Tamtam

    I think RAHs story is plenty relevant as it highlights that doctors can and do order unnecessary tests/interventions without necessarily thinking of the whole picture and what the patient has to endure when they order these things or whether there is an alternative.

    Eta: hugs @J37 too!
    Last edited by Little Miss Sunshine; 12-04-2016 at 08:48.

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  16. #110
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    Quote Originally Posted by xanadu View Post
    2 weeks ago my 2 year old was diagnosed with a rare cancer of the kidney known as Clear Cell Sarcoma. With chemo, radiation and surgery he has a survival rate of 80% to live a normal life (not just 5 years). He starts chemo this week. In 2 weeks the biopsies, CT's, scans, etc have been very traumatizing for my son and for us to watch. Once he starts chemo, he will have no immune system and could even possibly die from catching a cold.
    I am forever thankful that the cancer is only in his kidney and not his brain like this poor little boy.
    I know some of you right now sitting back comfortably having never experienced any of this know exactly what you would do in this circumstance, give him the chemo!
    It's not an easy decision. I don't even know what I would do.
    Huge amounts of chemo and radiation for that boy to have a horrible life in hospital every day of the week for a 0-50% chance of surviving maybe only 5 years?!?!
    Dunno, think I'd get all the money I could and go on a huge holiday and let him enjoy every day to the fullest until the end....
    Hugs to you, how scary. My DD picked up several bugs while having chemo. I'm sure you've already been told, but if your LO gets a fever of 38° you have to go straight to hospital where they'll put him on antibiotics. The highest temperature my DD ever got to was about 41°, but I was never fearful that she would die from it. By that point we were already in the ED (at Monash they have an isolation room for febrile neutropenic children), and she had been put on antibiotics already. Also please don't be afraid to let them give him panadol to bring the fever down. It works well and makes them feel more comfortable while the antibiotics kick in.

    Also, I think people keep confusing the '5 year' thing. It's not their life expectancy, it's the chance of being alive still AT 5 years. Not sure how I can make that any clearer.

    Anyway, all the best for your DS. May he make a full recovery and live a full life. Make sure you look after yourself, too. Take any offers of help from family and friends and make sure you talk to the hospital social worker to tap into any avenues of assistance available.

    Hugs xx

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