Amish parents refusing cancer treatments for their daughter

[mockingbird]

http://abcnews.go.com/Health/amish-girl ... d=20168395

 

"A 10-year-old Amish girl will not be forced to undergo chemotherapy, an Ohio judge has ruled, siding with the girl's parents, who say previous chemotherapy made her sick."

 

I guess she got one year of treatment and then they stopped it because of chemo side effects. I guess the parents are claiming that they weren't informed about the side effects.

 

I'd like to know the whole story... they said she had multiple tumors when it was discovered so that makes me think it is metastatic and maybe she would have had a smaller chance of surviving and it would make sense to stop in that case, although the hospital says the chemo is 85% effective so maybe not. I'm not super familiar with different stages of lymphoma.

 

In general though parents denying their kids modern medical care just angers me. You are putting your child in danger and I think it should be considered child abuse/neglect. Also, the judge ruled that "Even if the treatments are successful, there is a very good chance Sarah will become infertile and have other serious health risks for the rest of her life." I don't think this is a reason not to give a child life-saving treatment. I think surviving is better than not surviving and a child is not old enough to weigh the impact of long-term quality of life issues. Therefore, especially in decently cut-and-dry cases where it's get treatment and live vs. don't get treatment and die, we should ALWAYS save a child's life. It's not like this is an experimental last-ditch treatment or she is in a coma or something like that, there is a clear, effective treatment option. I also find it offensive that the judge/family seem to think it's not worth living if you're infertile or have health risks (wtf?). I think we're treading dangerously close to euthanasia if we can use that as justification for not giving a child treatment. Plenty of people have increased risks for diseases and/or are infertile and live happy, full lives. I imagine infertility would be complicated if you are Amish, but that's not justification to let your child die.

 

ETA: I hope the hospital continues to appeal.

ETA2: The judge also justified the decision by saying chemo is not a "surefire cure". I would say that nothing in medicine is 100% effective and this is BS. 85% is pretty darn good and worth a shot.

[Chicken bones]

Yeah, dead is so much better than infertile :? . Poor kid.

[BravaAmica]

http://www.salon.com/2013/09/05/when_en ... _decision/

Hershberger’s family began a two-year course of chemo for the girl last spring, but ended a second round in June because they said it was making her too sick. Her father, Andy, says that she “begged†her parents to let her stop...But in his ruling, Judge John Lohn said, “They are good parents. They understand completely the grave situation their daughter is in and the consequences of their choice to refuse chemotherapy for Sarah at this time.â€

Her parents are respecting her wishes. And they will return to chemo in the future if she wants.

[Rita]

My $.02:

My grandmother's lymphoma killed her in her 20s, leaving 3 small children. My chemo just affects me mentally. My aunt's and my uncle's nearly killed them. It aged my uncle 25 years, and put him on disability. Aunt said never again, and she did choose to stop treatment when secondary cancers grew, and passed. She and I both lost our fertility to the cancers, not the chemo. My mother made that decision for me. She did choose to give up my fertility for my life. Some days I feel like only part of a person, and that I've let my entire genetic line down. Hodge-podge of similarities.

I realize every case is different, but I must say that not only does medical intervention NOT always cure, it can significantly reduce your quality of life. Some people choose to not fight. Would my uncle or I make the same decision as my aunt? Well, he probably wouldn't survive another occurrence, either way. Me, I'm not sure that I'd fight for one more day, if it meant I was sick as a dog for the 6 prior. Yes, 85% odds of survival are high, but without being in that family, I can't judge. I just can't.

[mockingbird]

http://www.salon.com/2013/09/05/when_ending_a_childs_cancer_treatment_is_the_right_decision/

Her parents are respecting her wishes. And they will return to chemo in the future if she wants.

Is a ten year old able to make that decision though? Especially when the hospital is claiming it is a very treatable cancer, and this is the first time... not a remission and not a last-ditch/likely to only be palliative thing? Kids (even vs. teens) don't developmentally really have the mental capacity to understand long-term consequences especially when faced with immediate suffering/pain. Understandably they just want to feel better.

I do feel for her though and think there is likely more to the story.

1. From the description of her presentation I got the impression that she had a more advanced case. That would change my opinion of something that's very treatable and should be aggressively pursued, vs. something that's advanced, likely to recur, and therefore make treatment reasonable as a first attempt but not necessary considering limited efficacy in that specific case. I know the hopsital said "85%" but I am not sure if that statistic is just lymphomas in general, or specific to her type and stage.

2. There are a lot of drugs now to mediate nausea and such, I feel like the hospital maybe could have done something more to mediate her discomfort, or even (especially for the second year which is likely to be maintenance treatment vs. the heavy-duty "induction") tried to compromise in terms of switching her to a different medication/regimen if possible or lowering the dose.

And also, I had very intense chemo and radiation, and it basically gave me lifelong chronic illness. However, I am able to live a productive life. I have thought a lot about how far I would go if something serious happened to me again and sometimes I am not sure I would keep being aggressive. I feel like an adult can weigh the risks and benefits and make that decision, but a child cannot, and you never know how they are going to feel about a difference in quality of life. I understand why parents would be cautious and like I said I'm not sure what her specific case is. But I think with kids you should err towards treatment because you never know, unless it seems more futile than helpful (like with an advanced stage cancer). Actually, the ethics standard for kids in medicine is "best practice" rather than with adults which is "substituted judgement" (following their wishes) because they assume kids (especially younger) don't understand long-term consequences as well, and I think there is fear of euthanasia by bringing quality of life in too much when you cannot legally go to the actual patient for an opinion.

[Rescinded and Mended]

A few things here...

One, parents are frequently not informed of all of the side effects regarding chemotherapy as soon as treatment starts. I hate to admit it, but a big reason for this is because many parents would balk at beginning treatment at all. Chemotherapy side effects are numerous and wide-ranging, and some of them are pretty awful. The ones that occur often stay with the patient for the duration of treatment and years beyond. A lesser reason for doctors to withold such information is because not all side effects manifest in every chemotherapy patient - some never occur. Quite simply, much of the information of the side effects of chemotherapy is on a need-to-know basis.

Two, depending on when the girl's tumors were discovered, her cancer doctors still would have pulled out every medical stop in the book in an effort to shrink and destroy the tumors. Unless they came back and metastisized in every organ of her body, and the doctors told her parents there was absolutely nothing more they could do, then the doctors would not have reccomended that the parents stop her treatment. What I can tell you from what I have learned personally is that even the most critical cases are treated for years at a stretch, unless the patient is already at death's door upon diagnosis. Based on what I'm reading here, this isn't the case, she's already been treated for a year, the doctors have more they can do, and we can conclude that the parents are arbitrarily pulling the plug.

Three, you can get around infertility. Boys who have bone marrow transplants are asked if they want to bank sperm before the transplant process, and I have no reason to believe why girls of a certain age couldn't volunteer to freeze eggs in the interest of fertility treatments in the future. Fundamentalist thinking toward childbearing shouldn't be enough of a reason to stop cancer treatment in its entirety. Sarah can't have the desired elebenty kids in the future if she dies in the present because her parents refuse to allow her lifesaving treatments.

Four, social services and the collective of nurses and cancer doctors that meet and discuss each individual case are two separate entities. A parent does technically have the right to tell a doctor that she doesn't want her daughter to receive chemotherapy at a certain time; the doctor will advise against it and make a note in the child's records for future reference, but depending on the severity of the case, will not alert social services. Conversely, I've known social services to get involved when a parent who has numerous children has to leave them alone or with sitters in order to take their afflicted child in for treatments.

The line between the two is not always solid, but I have a hard time believing that social services and law enforcement would not get involved if the Sarah's parents decided to stop her cancer treatment for no discernible reason. The "making her sick/infertility" arguments aren't a good enough reason. Are there any lawyers here who can explain why the judge ruled the way he did?

I've met women who now work as cancer nurses 20+ years after being treated for cancer themselves. The judge's opinion on chemotherapy not being a "surefire cure" is invalid. I hope that Sarah's parents will not be allowed to get away with this.

[flyawaystray]

My $.02:

My grandmother's lymphoma killed her in her 20s, leaving 3 small children. My chemo just affects me mentally. My aunt's and my uncle's nearly killed them. It aged my uncle 25 years, and put him on disability. Aunt said never again, and she did choose to stop treatment when secondary cancers grew, and passed. She and I both lost our fertility to the cancers, not the chemo. My mother made that decision for me. She did choose to give up my fertility for my life. Some days I feel like only part of a person, and that I've let my entire genetic line down. Hodge-podge of similarities.

I realize every case is different, but I must say that not only does medical intervention NOT always cure, it can significantly reduce your quality of life. Some people choose to not fight. Would my uncle or I make the same decision as my aunt? Well, he probably wouldn't survive another occurrence, either way. Me, I'm not sure that I'd fight for one more day, if it meant I was sick as a dog for the 6 prior. Yes, 85% odds of survival are high, but without being in that family, I can't judge. I just can't.

I also wonder if the chemo then was different. My uncle had non-Hodgkins lymphoma, twice. He now has myelofibrosis, and I think he had leukemia from chemo. It sucks that chemo can cause some many problems, yet can also help save lives. My uncle has to have regular blood transfusions.

[mockingbird]

Three, you can get around infertility. Boys who have bone marrow transplants are asked if they want to bank sperm before the transplant process, and I have no reason to believe why girls of a certain age couldn't volunteer to freeze eggs in the interest of fertility treatments in the future.

You can, I was asked about that before starting another treatment. I didn't do it because I'd already had chemo/radiation as a baby so we all kind-of thought the damage, if there, was already done. I was around 10 when they asked. I would assume a girl of a similar age would have that option presented to her before starting chemo now. I found a lot of info about fertility options on a children's hospital website awhile back, don't remember which one, but it did make it seem like it was standard there to talk to kids/parents about their options before starting treatment.

--

This whole attitude just baffles me. I guess if you believe the herbs/God will help that makes sense but my mom has told me she felt like she had to pick for me between certain death and a chance of maybe surviving but it was a no-brainer to her, she couldn't feel like she let her child die without trying anything.

[Rita]

A few things here...I hope that Sarah's parents will not be allowed to get away with this.

You write so well; I disagree with you, but in a genteel, Jane Austen sort of way. The kindler, gentler FJ.

[Rescinded and Mended]

You write so well; I disagree with you, but in a genteel, Jane Austen sort of way. The kindler, gentler FJ.

Thanks, Rita.

What parts do you disagree with? I'd love to know your reasons.

ETA: Rita, I re-read your last post. I do see your points, and I do agree about the longterm affects and how difficult it can be to deal with.

My now 13-year-old son is currently enduring chemotherapy treatment for leukemia. We are already looking at longterm neuropathy in his legs, and other conditions are developing as well. But I feel I have to try. He's in the high-risk group for his plan of treatment, and I can't just let this go without a fight. Some days treatment is so difficult for him, but I keep telling him that if he can just get through this, he'll be able to get his life back.

Deep down, I know the side effects don't end when treatment does. I know the road ahead will still be fraught with difficulty. But I want to do everything in my power to try and help my son get through this so he can start living for himself, and on his own terms.

[Jinderella]

Thanks, Rita.

What parts do you disagree with? I'd love to know your reasons.

ETA: Rita, I re-read your last post. I do see your points, and I do agree about the longterm affects and how difficult it can be to deal with.

My now 13-year-old son is currently enduring chemotherapy treatment for leukemia. We are already looking at longterm neuropathy in his legs, and other conditions are developing as well. But I feel I have to try. He's in the high-risk group for his plan of treatment, and I can't just let this go without a fight. Some days treatment is so difficult for him, but I keep telling him that if he can just get through this, he'll be able to get his life back.

Deep down, I know the side effects don't end when treatment does. I know the road ahead will still be fraught with difficulty. But I want to do everything in my power to try and help my son get through this so he can start living for himself, and on his own terms.

I wish your son and your family all the luck you need!

My 11-year-old son finished his leukemia treatment a few months ago. He reacted very bad to the treatment, his neuropathy gave him pains that I can't even begin to describe. To be honest, there have been moments were he wanted it all to end and I understood. During that period I have been wondering if the suffering would be rewarded with a good live.

And now his chemotherapy is just 4 months in our past, but it feels like it was years ago. He is doing well at school, his neuropathy is getting so much better, he is growing again and he feels and looks healthy. When his suffering was extreme, nor he, nor we could see this good period was coming, I have been thinking about stopping one specific type of chemo. But our doctors, who see children recover all the time, they knew the struggle had to be endured.

He does have some side effect, his sight is badly effected among other things. He will be monitored the rest of his live. There is this horrible possibility the leukemia will be back before he turns 16. There is not jet a method to prevent children who have not reached puberty to become infertile (but lots of children having chemo don't get infertility). However, live is still pretty amazing and much better than I would have guessed halfway during the treatment.

I don't know the specifics of this case. For me, it does depend on the prognosis the girl has for recovery. If there's a 85% change of survival, I think this is a wrong decision. When they mean only 85% of the tumors can be destroyed, not so sure...

[chaotic life]

I am absolutely, 100% opposed to parents who deny medical treatment to their children because of their religious objections.

The Amish do NOT forgo medical care for religious reasons. They don't see doctors routinely and they don't vaccinate, but they are very comfortable seeking medical care when they feel it is needed, including treating childhood cancers and seeking a C-section at a hospital for a complicated homebirth.

That said, I DO think that children and their parents DO have a right to decide what course to take in treating a complicated disease, especially one that doesn't have a strong chance of curing and a high rate of suffering.

No one has released details of this child's particular case. Leukemia is matched for DNA and then typically the first treatment is 18-24 months. I'm unclear whether this child was in her first treatment protocol when they say "round" or not. Leukemia treatment cycles in and out of chemotherapy for that extended period of time.

In general with all cancers, if the first treatment doesn't work and you are having to try a different treatment, then the likelihood of response and recovery starts going down with each addition treatment that fails. I can't say anything about this case because the details of her medical situation have been well protected.

Sometimes children's hospitals DO jump to court orders too fast, honestly. It can be HARD to face the mortality of a child. Recent court cases have ruled in favor of forcing even older teens into forced treatments for their cancer over the child's objections. It's WRONG. It's WRONG to bully children simply because they are not grown ups yet. It's WRONG to automatically go to court and not respect the wishes of the child and their family. It's complicated but treatment is NOT always the right answer.

Everything I have read says this decision has been led by the child herself. I realize she is 10. However, she has every right to have a voice in her own care. This family is NOT making this choice based upon religious objections but based upon their own choices and the preferences of the child herself. I don't see any reason the courts should have the ability to override the choice of this family simply because letting them decide this may mean a child dies.

[apple1]

... Deep down, I know the side effects don't end when treatment does. I know the road ahead will still be fraught with difficulty. But I want to do everything in my power to try and help my son get through this so he can start living for himself, and on his own terms.

Aside (not telling you what to do): I am a cancer survivor - 10 years later for me. I had surgery and chemo.

Yes, side effects are forever. But IMHO, side effects beat death by a long shot. Life is so worth it. Every moment.

JMHO. I hope somehow this is a tiny bit of encouragement.

[apple1]

The Amish do NOT forgo medical care for religious reasons. They don't see doctors routinely and they don't vaccinate, but they are very comfortable seeking medical care when they feel it is needed, including treating childhood cancers and seeking a C-section at a hospital for a complicated homebirth.

This is correct.

I am a healthcare professional working at a well-known children's hospital. We have Amish patients at our hospital all the time. All the time.

[Rescinded and Mended]

I wish your son and your family all the luck you need!

My 11-year-old son finished his leukemia treatment a few months ago. He reacted very bad to the treatment, his neuropathy gave him pains that I can't even begin to describe. To be honest, there have been moments were he wanted it all to end and I understood. During that period I have been wondering if the suffering would be rewarded with a good live.

And now his chemotherapy is just 4 months in our past, but it feels like it was years ago. He is doing well at school, his neuropathy is getting so much better, he is growing again and he feels and looks healthy. When his suffering was extreme, nor he, nor we could see this good period was coming, I have been thinking about stopping one specific type of chemo. But our doctors, who see children recover all the time, they knew the struggle had to be endured.

He does have some side effect, his sight is badly effected among other things. He will be monitored the rest of his live. There is this horrible possibility the leukemia will be back before he turns 16. There is not jet a method to prevent children who have not reached puberty to become infertile (but lots of children having chemo don't get infertility). However, live is still pretty amazing and much better than I would have guessed halfway during the treatment.

I don't know the specifics of this case. For me, it does depend on the prognosis the girl has for recovery. If there's a 85% change of survival, I think this is a wrong decision. When they mean only 85% of the tumors can be destroyed, not so sure...

Jinderella, thank you. Your post gives me hope for the future. This is arguably the most difficult thing that anyone will ever go through, for both the patient and parents. I am glad your son is doing better now and hope he will continue with his recovery and live a long and happy life.

[lizziesmom]

I may make some of you angry with this post, but to me this is a private decision that should be made by the family. It's very easy to be judgmental when you are on the outside looking in but when it happens to you or to someone in your family, do you really want other people telling you what to do and how to live? Cancer treatments are brutal. There are side effects beyond just nausea and being tired. At some point the quality of life becomes affected. I sure wouldn't want an outsider forcing me to have treatments when the bad days outnumber the good and the prognosis is bad. (BTW, I know what I'm talking about because I have been in treatment for cancer for 7 straight years. Last week I had to have two units of fluids, two blood transfusions and a platelet transfusion just to get my body strong enough for treatment on Monday).

[JesusFightClub]

If the kid is going to die, she is, and it might be kinder to let her go.

My cousin battled cancer for ages and it was horrible. Eventually it got him and he died after multiple scares.

A comrade got told he has terminal cancer (and I mean terminal, there is not a hope there). He's staying drinking and smoking until the end. He has, at the best, two years. I think he has made the right decision.

[Rescinded and Mended]

I am absolutely, 100% opposed to parents who deny medical treatment to their children because of their religious objections.

The Amish do NOT forgo medical care for religious reasons. They don't see doctors routinely and they don't vaccinate, but they are very comfortable seeking medical care when they feel it is needed, including treating childhood cancers and seeking a C-section at a hospital for a complicated homebirth.

That said, I DO think that children and their parents DO have a right to decide what course to take in treating a complicated disease, especially one that doesn't have a strong chance of curing and a high rate of suffering.

No one has released details of this child's particular case. Leukemia is matched for DNA and then typically the first treatment is 18-24 months. I'm unclear whether this child was in her first treatment protocol when they say "round" or not. Leukemia treatment cycles in and out of chemotherapy for that extended period of time.

In general with all cancers, if the first treatment doesn't work and you are having to try a different treatment, then the likelihood of response and recovery starts going down with each addition treatment that fails. I can't say anything about this case because the details of her medical situation have been well protected.

Sometimes children's hospitals DO jump to court orders too fast, honestly. It can be HARD to face the mortality of a child. Recent court cases have ruled in favor of forcing even older teens into forced treatments for their cancer over the child's objections. It's WRONG. It's WRONG to bully children simply because they are not grown ups yet. It's WRONG to automatically go to court and not respect the wishes of the child and their family. It's complicated but treatment is NOT always the right answer.

Everything I have read says this decision has been led by the child herself. I realize she is 10. However, she has every right to have a voice in her own care. This family is NOT making this choice based upon religious objections but based upon their own choices and the preferences of the child herself. I don't see any reason the courts should have the ability to override the choice of this family simply because letting them decide this may mean a child dies.

chaotic life, I wanted to address your post.

As far as I am concerned, Sarah's parents could have taken her off treatment for any number of personal reasons, none of them religious. And that still wouldn't matter one whit in this case - the issue at hand is the fact that they are trying to stop her from getting treatment, period. They could be Amish, FLDS, Church of the Flying Spaghetti Monster, whatever you like. The one thing I'm getting out of this is that they are not making informed decisions on the basis of what is best for Sarah.

Allow me to elaborate. I've discovered that Sarah is being treated for the same type of cancer as my son currently is.

Did you know that Acute Lymphoblastic Leukemia (ALL) has one of the highest cure rates out of ANY type of cancer in existence? The cure rate is between 60-90%. I will quote my own child's cancer doctor: "If you have to have cancer, this is the one to have." The induction phase of treatment for ALL, where chemotherapy is introduced into the body to kill all cancer cells and secure a remission, is usually 4-6 weeks, depending on how far it has spread and if it is confined to the bone marrow, is in the blood, or has spread to the internal organs. From there, more intensive chemotherapy is administered on average from between 6 months to a year. More agressive types of leukemia can require up to 2 years to get them in remission. From there, the addtional time can be anywhere from 2-4 years of maintenance therapy. And I can tell you that boys always have to do it for longer stretches of time than girls, because the cancer is capable of hiding in testicular tissues.

I agree that we need more details of Sarah's case. We don't know exactly how long she's been doing it, we don't know if a remission has been secured at all, and we don't know much about these tumors, if there are any (many of these sources can't seem to agree on the type of cancer she has - I found several that agreed upon a diagnosis of ALL, so I am discussing it here).

When a remission is secured and the protocol runs for its alloted time (this may be adjusted due to any toxicity accrued within the body or a change in how the cancer is treated in general), there are no further rounds of chemo. With a blood cancer such as leukemia, if it comes back, it goes straight to a bone marrow transplant, end of story. The only difference in Sarah's case is that if she has cancerous tumors at the same time (which can happen), doctors would want to spend time getting those under control and destroying them before treatment wraps up for the leukemia aspect. And yes, that could take longer for everything overall. But from what little we know, even if Sarah is in remission, she may not have been doing it long enough, and it could come back. Bone marrow transplants can be dangerous, and are the only known treatments that can eradicate a returning blood cancer. Some children don't survive them - because of her parents' actions, this is what Sarah could be facing. If there are tumors, and the treatments have stopped before they are fully dissolved, she has no chance at all.

I am also disturbed that all of Sarah's feelings are being filtered through her lawyer and parents. I read a number of articles about her case, and everything I've heard has been through her lawyer and parents. I've read nothing that has lead me to believe that all of these decisions were made exclusively by Sarah and would prefer to hear a recorded statement that comes directly from her. Also, did you listen to the sound bite from her father in mockingbird's orignal post? He sounded like he didn't have a firm grasp on how chemotherapy works.

I know that Sarah has suffered. I know she's weary, and I know she doesn't want to do it anymore. And I have no doubt that her parents don't want to see her suffer. Believe me, you're preaching to the choir here. My family has three years invested in my son's treatment plan, and we still have another year to go. But the truth is, her chances for surviving ALL are strong if she continues the treatments. You think there isn't a parent or child alive who hasn't felt this way? We continue on, not because the road isn't fraught with difficulty, but because we wish to safeguard the lives of our children. If there is a chance for survival, and a strong one at that, then shouldn't Sarah's parents fight for her in spite of the difficulties?

Links for other sources I read:

http://www.worldmag.com/2013/09/amish_p ... emotherapy

http://www.foxnews.com/us/2013/09/04/ju ... me-cancer/

http://www.medicaldaily.com/ohio-hospit ... emo-254177

Info on lymphoblastic lymphoma:

http://www.macmillan.org.uk/Cancerinfor ... 6_Anchor_2

[Rescinded and Mended]

I would like to add, I do agree with the prospect of letting people make their own end-of-life decisions. If a child or adult is so far gone that there is no hope, then that person must make the best choices for themselves, and should expect the support of their loved ones. It would not be for me or anyone else to say otherwise. In my previous post, I have made the assumption that Sarah is earlier in her phase of treatment, and not completely far gone.

[treemom]

I wonder if she has AML or ALL. Those are really different protocols and the gold standard for ALL, the one my hospital pioneers is 3 years. Induction, Cosolidation, Maintenance. And it is tough and it is life threatening. AML is usually shorter but even more beastly.

It is hard. And you know, I see it every day and I am glad I work at a place that makes the miracles happen, but I also know that quality of life matters too.

[Rescinded and Mended]

I wonder if she has AML or ALL. Those are really different protocols and the gold standard for ALL, the one my hospital pioneers is 3 years. Induction, Cosolidation, Maintenance. And it is tough and it is life threatening. AML is usually shorter but even more beastly.

It is hard. And you know, I see it every day and I am glad I work at a place that makes the miracles happen, but I also know that quality of life matters too.

Two of the articles I read said that it was ALL, but I'm not sure how trustworthy they are, since none of the articles seem to completely agree on what Sarah has.

And you are absolutely right, treemom. AML is certainly more awful, and it would be a better argument for ending Sarah's treatment, depending on how far along she is.

I met a girl who was in her 5th year of treatment. She was on morphine for the pain. I can't even imagine what her quality of life must be like.

[hapamama]

We are not privy to the side effects that Sarah is experiencing. I think it's foolhardy to judge her and her parents when we don't know the severity of those side effects.

[maybeizfundie]

Agreeing with chaotic life's post.

It is a really, really difficult situation to be in. And i do not think there should be any legal leeway for denying lifesaving medical care on the basis that "we're just going to pray about it".

But that is not what happened here. Refusal of medical care is not a tenet nor a practice of the Amish faith, though there might be pockets of them that do that. In our city every time we went downtown we saw Amish families, headed to one hospital or another. Usually the children's hospital. Because when their kids are really sick they take them to where they have a good chance of getting better. My River Brethren friend had non-hodgekins lymphoma as a teen, and while she did ask for prayer from the church elders, she also went through *all* the treatment. Lost her fertility, but she was grateful to be alive, and gave credit to the medical professionals who cared for her.

This really isn't a fundamentalist or Amish problem. It's a personal decision based on the results so far of the threatment. I don't know if it is the right decision. But it wasn't made because they were Amish or because they thought prayer would be more effective than chemo. :/

[maybeizfundie]

And ftr, I tend to be on the "treat me with whatever you have until I'm actually dead" side of things. But I sympathize with their position. It's a really crappy place to be in. :(

[Rescinded and Mended]

I'm not seeing anything anywhere about how Sarah's parents think prayer would be more helpful than chemo, and I don't think anyone here is saying that. And I did mention in my first post about possible fundamentalist thinking in terms of Sarah's parents worrying about her fertility, because it seems preposterous to grant precedence to future unborn children, potentially at the expense of her life. That comment alone tells me that the priorities of her parents may be misplaced.

I agree that the side effects of chemotherapy are far ranging, and we can't know everything her family has experienced from Sarah's course of treatment. There are no easy answers, and my thoughts are based both on personal experience and the limited amount of information there is to work with in Sarah's case.

I can only say that in most cases, chemotherapy has an eventual terminating point. Many cancer patients grow up and go on to lead happy, productive lives. But as long as there is hope and she isn't terminal, I can never agree that the best option is to give up midway.

This is just how I feel. Others may not feel the same way, and that's their choice. I can't force Sarah's parents to get her back into treatment - I can only speculate as to why their way of doing things right now could harm Sarah. Obviously, this is their choice. I only hope they are doing what is best for her.