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Post by mom on Aug 25, 2015 15:24:48 GMT
www.gofundme.com/akzmq2az is the link to the story as it is not too far from where I live. This baby has Down Syndrome and cancer. She is being subjected to two lumbar punctures a week and 8-10 months of "intensive" chemotherapy. Would she be treated elsewhere in the world with the attitude "save at all costs" if she is potentially that sick? Would there be someone to draw the line and say Lily is too fragile, sick and won't survive treatment? I would love to write an ethical paper on this supporting my opinion of her treatment as someone working in health care payments. I also can see it from the other side. (Perhaps a moral and religious perspective). I have no experience writing an ethical paper nor do I know my head from my foot when it comes to supporting my opinion with research and documentation. I can imagine doing the research, but ultimately there is no one who would need to read it. I had better edit this part, too in blue bold: I am not sure why two Peas are getting bent out of shape because I want to research something that interests me. It would be a work of fiction as I would not use anyone's real names or anything.
Not only that, I would not publish it. Heck I wouldn't even hit print on my printer.
I could also say I want to write a paper on why I hate wearing sunscreen and spend as little time in the sun as possible. Again, a completely pointless paper other than for my own enjoyment.
I am not thinking I am publishing anything of any importance here. It's fiction. Seriously? Are you high or something? Delusional? You know nothing about medical ethics and you've deemed yourself important enough to have an opinion? How about this? Lets put an older woman - lets say her 60's - with cancer, in the same situation. Oh, and she has a mental illness as well that she takes medicine for. Should we give her treatment? Or should we just let her die and not try to save her. If you are her family, you sure as hell would want someone to give her treatment if it could give you more time with your loved ones.
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Post by miominmio on Aug 25, 2015 15:28:40 GMT
www.gofundme.com/akzmq2az is the link to the story as it is not too far from where I live. This baby has Down Syndrome and cancer. She is being subjected to two lumbar punctures a week and 8-10 months of "intensive" chemotherapy. Would she be treated elsewhere in the world with the attitude "save at all costs" if she is potentially that sick? Would there be someone to draw the line and say Lily is too fragile, sick and won't survive treatment? I would love to write an ethical paper on this supporting my opinion of her treatment as someone working in health care payments. I also can see it from the other side. (Perhaps a moral and religious perspective). I have no experience writing an ethical paper nor do I know my head from my foot when it comes to supporting my opinion with research and documentation. I can imagine doing the research, but ultimately there is no one who would need to read it. I had better edit this part, too in blue bold: I am not sure why two Peas are getting bent out of shape because I want to research something that interests me. It would be a work of fiction as I would not use anyone's real names or anything.
Not only that, I would not publish it. Heck I wouldn't even hit print on my printer.
I could also say I want to write a paper on why I hate wearing sunscreen and spend as little time in the sun as possible. Again, a completely pointless paper other than for my own enjoyment.
I am not thinking I am publishing anything of any importance here. It's fiction. Seriously? Are you high or something? Delusional? You know nothing about medical ethics and you've deemed yourself important enough to have an opinion? How about this? Lets put an older woman - lets say her 60's - with cancer, in the same situation. Oh, and she has a mental illness as well that she takes medicine for. Should we give her treatment? Or should we just let her die and not try to save her. If you are her family, you sure as hell would want someone to give her treatment if it could give you more time with your loved ones. She said on another thread that she's manic now.
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Post by Goldynn on Aug 25, 2015 15:33:55 GMT
Goldynn....Have you seen the meme of the little girl in the shirt that says "I rock this extra chromosome" (or something close to that)? It went viral a few years ago. That is one of my friends DDs. She is amazing and such a blessing to EVERYONE that she meets. So I totally understand how delightful your son can be. Elannah's ignorance is just that. Sad ignorance. @luvspaper I have seen it, my older kids showed it to me - they love it! It's one of your friends' DD's? That is so cool
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Deleted
Posts: 0
May 2, 2024 8:40:42 GMT
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Post by Deleted on Aug 25, 2015 15:56:00 GMT
If you wanted to write it for your eyes only, why did you post it here? This is what I was thinking. The peas are her "research" source.
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Peamac
Pearl Clutcher
Refupea # 418
Posts: 4,218
Jun 26, 2014 0:09:18 GMT
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Post by Peamac on Aug 25, 2015 16:02:19 GMT
What? If you think it's an inappropriate comment or post in front of that child's relative, then feel free to assume it's an inappropriate post in front of anyone who's had a loved one in that situation.... And if you decide to start a thread pondering if a certain child is worth saving, then at least have the decency to not include their names or a link to their Go Fund Me page... You do realize that a search for that child will bring up this thread, right? You get that someone who loves that child could Google - looking for the fundraising page, and find someone singling out their daughter, niece, granddaughter, as a child not worth saving... I'm all in for a discussion about ethics and the cost of healthcare, but be aware and considerate... admin I don't want anyone who knows this child to find this thread... Please just delete it... I would hate for a friend or relative of the child in question to find this thread, even though the vast majority of the posts are sympathetic to the child and her family.
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Post by wordfish on Aug 25, 2015 16:10:05 GMT
This is why I think pjaye has always been one of the best things about this place even though I often disagree with her and she once told me not to talk to her anymore (or words to that effect). Bravo.
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Post by foolana on Aug 25, 2015 16:30:04 GMT
It sounds to me like someone is manic and desperately needs attention.
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Post by gar on Aug 25, 2015 16:32:04 GMT
It sounds to me like someone is manic and desperately needs attention. She's aware and she has an appt for today apparently.
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Post by foolana on Aug 25, 2015 16:35:42 GMT
Saving it all but the link. This is about a 10month old with AML who also happens to have Down syndrome. Look at Elannah's language here: subjected to lumbar punctures intensive chemotherapy save at all costs that sick draw the line too fragile and won't survive treatmentThis is what her parents write about her: If Elannah wanted a genuine discussion, then why did she just make up those false statements. Nowhere there or on the Facebook page does it say anything about being too fragile, or not surviving treatment, in fact the Facebook page says she probably already had her last lumbar puncture, The information in the OP has clearly been written to manipulate and deceive. Then suddenly when the backlash starts, she flips from "I would love to write an ethical paper on this supporting my opinion of her treatment as someone working in health care payments" Elannah she does not work in "health care payments" (another lie) to: "It would be a work of fiction" So she's going to write an ethical paper on this case that is simultaneously a work of fiction? There's been threads here and on the old site that have discussed abortion, specifically of children with disabilities and multiple people get very worked up about parents aborting these babies, yet here are two parents who obviously love their child very deeply and desperately want her to live but Elannah is trying to muster up support for the idea just to let her die because it's going to cost too much? AND she wants to "write an ethics paper" about why. Imagine if her parents saw that? I am disgusted by what she wrote and this time I'm not going shut up and ignore it. THIS times 1,000,000,000,000. I'm sick of it, too.
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Post by Yubon Peatlejuice on Aug 25, 2015 16:42:47 GMT
Is she going to write the paper in English or Japanese?
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Post by cindyupnorth on Aug 25, 2015 16:52:18 GMT
Just because you think something, doesn't mean you need to share it here on 2Ps, and yes we can ALLLLL scroll past all the random, wacky posts there have been on here lately by Elannah, but really? when we all know she needs some help. Those that are her friends, please encourage her to go get help, vs just saying it's ok for her to post all these things on here. We all know when she is manic every few months. I think a nice private FB group with you guys would be nice to support her.
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Post by Yubon Peatlejuice on Aug 25, 2015 16:53:47 GMT
Just because you think something, doesn't mean you need to share it here on 2Ps, and yes we can ALLLLL scroll past all the random, wacky posts there have been on here lately by Elannah, but really? when we all know she needs some help. Those that are her friends, please encourage her to go get help, vs just saying it's ok for her to post all these things on here. We all know when she is manic every few months. I think a nice private FB group with you guys would be nice to support her. Ain't nobody got time for that. Ellanah is a grown adult and should know that she really shouldn't have Internet access at all.
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scrapaddie
Drama Llama
Posts: 5,090
Jul 8, 2014 20:17:31 GMT
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Post by scrapaddie on Aug 25, 2015 16:54:17 GMT
I am not certain why you posted that you want to write a paper for yourself. If you want to write a paper for yourself.... go ahead.... but don't share it. (as you have done). And now don't be surprised that some people are offended.
My sister was brain damaged at birth.... but her life is worth every bit as much as any other person's life and I am going to get angry if anyone wants to even discuss that!
A paper written for yourself, without experience, training or any other expertise, should be just that... written for yourself.
Sometimes, it is best to keep parts of yourself off of the net....
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JustTricia
Pearl Clutcher
Posts: 2,825
Location: Indianapolis
Jul 2, 2014 17:12:39 GMT
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Post by JustTricia on Aug 25, 2015 17:00:12 GMT
Personally, I've wondered for a while if the OP has Munchausen Syndrome and if the message board isn't making it worse.
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Post by myboysnme on Aug 25, 2015 17:04:53 GMT
Jumping in to something here but this go fund me bothers me as so many of them do because the father says, "Wife and I can't work while she's getting medical care for the next year." That's paraphrased - I didn't write it down. I don't care what condition the child has - they love her and want her to survive. But both parents don't work? I guess they have national health care or something because I don't know how 2 parents don't work and strangers foot the bill.
I don't have any answers but this bugs me. Seems so arbitrary whose go fund me account gets tons of donations and whose gets ignored. I hate the whole go fund me idea anyway.
Funeral expenses and to help out the deceased's family are two big ones with go fund me as well. but we've talked about that before in other threads.
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Post by mirabelleswalker on Aug 25, 2015 17:07:07 GMT
I can't even count how many children with Down Syndrome that I've seen treated for cancer. They respond very well to treatment. I don't think that this child should be denied treatment. That's absurd.
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Post by papersilly on Aug 25, 2015 17:35:00 GMT
i have seen far worse things that people start Go Fund Me accounts for. how is helping a child with medical issues worse than asking for wedding money, vacation money, plastic surgery money, stupid inventions, etc.?
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tincin
Drama Llama
Posts: 5,368
Jul 25, 2014 4:55:32 GMT
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Post by tincin on Aug 25, 2015 17:36:56 GMT
I have often wondered if the millions of dollars we spend saving a baby who will spend the rest of their life handicapped in multiple ways would have been better spent feeding the children who are going to bed hungry. It is easy to say since the baby being saved isn't mine but isn't there a point at which we would be better of saying that no attempts at saving a child are made? I don't suspect there is an easy answer but it's nice to know someone else is thinking like me. Handicapped in multiple ways because of the Down's or because of the cancer ? I'm sure these people ( taken as an example) are pretty glad that no one made that decision when they were 10 months old and facing a life with Down's 7 stars with Down Syndrome there are many more that lead quite " normal" lives.Or for that matter the millions of children that have survived childhood leukaemia. Sorry I didn't make myself more clear I was actually primarily referring to premature births. Medical decisions are made to attempt to save babies that are being born earlier and earlier. Many of those who survive are left with so many disabilities that I'm not certain that they have any quality of life. Is there a point at which a line is draw that says enough is enough? Should there be?
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Post by foolana on Aug 25, 2015 17:43:28 GMT
Perhaps you should consider writing your ridiculous posts here and then hitting the delete button as you said you would do with your imaginary ethical paper? Why is it okay to inflict your crap on us all the time?
ETA: She'll disappear for a little while to let everything settle down here but she'll be back. She always comes back.
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tincin
Drama Llama
Posts: 5,368
Jul 25, 2014 4:55:32 GMT
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Post by tincin on Aug 25, 2015 17:48:04 GMT
Why are so many of you beating up on a person we already know is dealing with mental health issues? She is entitled to post her opinions and you are entitled to ignore her or put her on ignore. Please stop it. I'm certain she has enough people judging her in real life.
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georgiapea
Drama Llama
Posts: 6,846
Jun 27, 2014 18:02:10 GMT
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Post by georgiapea on Aug 25, 2015 17:58:25 GMT
A Go Fund Me account does not 'take' anyone's money away from them. It's freely given by those who can afford to do so. I don't personally believe chemo does more than give a shortish extension to life and I would decline it for myself. Parents want their children to survive. I would never attempt to tell another person what they should do regarding life saving or extending measures for themselves or their family.
Elannah, if you want to express your protest, how about contributing through your newspaper letters to the editor column. Your message will be published and read by many and you can feel you've done your duty.
ETA: Unless otherwise directed by the patient, such as a 'Do not ...' order, aren't all doctors everywhere required to do everything possible to save the patient's life? The only exclusion I can think of at the moment is when a person hospitalized is brain dead and the other body functions are being machine supported.
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~Lauren~
Pearl Clutcher
Posts: 3,876
Jun 26, 2014 3:33:18 GMT
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Post by ~Lauren~ on Aug 25, 2015 18:01:54 GMT
Why are so many of you beating up on a person we already know is dealing with mental health issues? She is entitled to post her opinions and you are entitled to ignore her or put her on ignore. Please stop it. I'm certain she has enough people judging her in real life. In three words...because they can. Only here do you find people berating a person with known mental illness. While I understand their frustration with Elannah's posts, mental illness has never stopped the peas from piling on.
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Post by foolana on Aug 25, 2015 18:03:27 GMT
Why are so many of you beating up on a person we already know is dealing with mental health issues? She is entitled to post her opinions and you are entitled to ignore her or put her on ignore. Please stop it. I'm certain she has enough people judging her in real life. I understand what you're saying. I don't know if we know for sure that she's mentally ill just because she says so. She's been very mean to a lot of people (myself included) and with this being a mostly anonymous message board I don't know why we have to give a pass to someone who says awful things just because she claims she's bipolar.
She needs to take responsibility for what she says and the lies she's perpetrated on this very thread. Linking the Go Fund Me account to this post added nothing to her questions and I hope the family never sees what she said about them. If she truly is as sick as she claims then she should have empathy for this family.
I'm sorry if we disagree; I have a lot of respect for you tincin.
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Post by foolana on Aug 25, 2015 18:04:41 GMT
Why are so many of you beating up on a person we already know is dealing with mental health issues? She is entitled to post her opinions and you are entitled to ignore her or put her on ignore. Please stop it. I'm certain she has enough people judging her in real life. In three words...because they can. Only here do you find people berating a person with known mental illness. While I understand their frustration with Elannah's posts, mental illness has never stopped the peas from piling on. Spoken like a true hypocrite.
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Post by scrapqueen01 on Aug 25, 2015 18:06:25 GMT
Handicapped in multiple ways because of the Down's or because of the cancer ? I'm sure these people ( taken as an example) are pretty glad that no one made that decision when they were 10 months old and facing a life with Down's 7 stars with Down Syndrome there are many more that lead quite " normal" lives.Or for that matter the millions of children that have survived childhood leukaemia. Sorry I didn't make myself more clear I was actually primarily referring to premature births. Medical decisions are made to attempt to save babies that are being born earlier and earlier. Many of those who survive are left with so many disabilities that I'm not certain that they have any quality of life. Is there a point at which a line is draw that says enough is enough? Should there be? What is quality of life? Who gets to determine what quality of life means? There isn't a crystal ball that one can look into to see how a person turns out. I was born with a disability. According to doctors I'm not suppose to be walking and have a low IQ. I walk unaided, have a college education, drive a car, have worked outside the home, have a husband and a daughter and do lots of things I'm not suppose to be able to do according to doctors. They can only give their best prediction. Sometimes they are wrong.
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tincin
Drama Llama
Posts: 5,368
Jul 25, 2014 4:55:32 GMT
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Post by tincin on Aug 25, 2015 18:06:38 GMT
Why are so many of you beating up on a person we already know is dealing with mental health issues? She is entitled to post her opinions and you are entitled to ignore her or put her on ignore. Please stop it. I'm certain she has enough people judging her in real life. I understand what you're saying. I don't know if we know for sure that she's mentally ill just because she says so. She's been very mean to a lot of people (myself included) and with this being a mostly anonymous message board I don't know why we have to give a pass to someone who says awful things just because she claims she's bipolar.
She needs to take responsibility for what she says and the lies she's perpetrated on this very thread. Linking the Go Fund Me account to this post added nothing to her questions and I hope the family never sees what she said about them. If she truly is as sick as she claims then she should have empathy for this family.
I'm sorry if we disagree; I have a lot of respect for you tincin.
Thank you and I also respect your opinion. I think this is a case of having to agree to disagree.
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tincin
Drama Llama
Posts: 5,368
Jul 25, 2014 4:55:32 GMT
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Post by tincin on Aug 25, 2015 18:09:15 GMT
Sorry I didn't make myself more clear I was actually primarily referring to premature births. Medical decisions are made to attempt to save babies that are being born earlier and earlier. Many of those who survive are left with so many disabilities that I'm not certain that they have any quality of life. Is there a point at which a line is draw that says enough is enough? Should there be? What is quality of life? Who gets to determine what quality of life means? There isn't a crystal ball that one can look into to see how a person turns out. I was born with a disability. According to doctors I'm not suppose to be walking and have a low IQ. I walk unaided, have a college education, drive a car, have worked outside the home, have a husband and a daughter and do lots of things I'm not suppose to be able to do according to doctors. They can only give their best prediction. Sometimes they are wrong. I don't know who determines quality of life but it is something I wonder about.
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scrappinmama
Pearl Clutcher
Posts: 4,864
Jun 26, 2014 12:54:09 GMT
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Post by scrappinmama on Aug 25, 2015 18:25:13 GMT
Why are so many of you beating up on a person we already know is dealing with mental health issues? She is entitled to post her opinions and you are entitled to ignore her or put her on ignore. Please stop it. I'm certain she has enough people judging her in real life. I'm not sure if she really is mentally ill. We can only go by what she tells us. I do know that there are very clear patterns of behavior with her. Even if she is mentally ill, she can still be manipulative and someone who purposely tries to stir the pot. She needs to be held accountable for her actions, whether she is mentally ill or not. If she doesn't want to be judged, then she doesn't have to post things like this. Something tells me that she does it on purpose. I do agree that we all can handle this differently though. Maybe it would be better if we all just ignored her posts. I really do think she does this stuff to get attention. We should all just ignore and not feed in to her.
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flute4peace
Drama Llama
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Jul 3, 2014 14:38:35 GMT
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Post by flute4peace on Aug 25, 2015 18:26:33 GMT
Just want to make clear that, like the majority here, I find the o/p bizarre and unnecessary. I hope that Elannah is getting whatever care she needs.
That being said, the actual subject of medical ethics, especially when it comes to someone who is disabled, is a very real and complex issue, and it probably should be talked about more than it is. I have a family member who is profoundly affected by Down Syndrome & Autism. At age 15, she functions at probably an 18-24 month-old level, and likely won't progress much more. She is unable to participate in decisions regarding her medical care. She is dearly loved and receives the best care available to her. It's highly likely that, at some point in her life, her parents will have to make some very difficult choices. I pray that it doesn't happen, but statistics are not in their favor. It's a heartbreaking situation to be in, and I think this is one of those cases where it's easy to say "I would never" when we ourselves haven't been faced with the realities of the situation. I AM NOT SAYING THAT ANY CHILD DOESN'T DESERVE TO BE TREATED MEDICALLY. I'm just saying that there are cases where there are no easy answers, no black & white. It sucks, but it is real.
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Post by nurseypants on Aug 25, 2015 18:34:23 GMT
What is quality of life? Who gets to determine what quality of life means? There isn't a crystal ball that one can look into to see how a person turns out. I was born with a disability. According to doctors I'm not suppose to be walking and have a low IQ. I walk unaided, have a college education, drive a car, have worked outside the home, have a husband and a daughter and do lots of things I'm not suppose to be able to do according to doctors. They can only give their best prediction. Sometimes they are wrong. I don't know who determines quality of life but it is something I wonder about. Not to hijack the thread, you can decide your own quality of life issues with an Advance Directive. You can google to get the forms to fill out. When a family member became incapacitated, the fact that he had an Advance Directive made the decision-making significantly less complicated and emotional.
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