AP: Ohio Amish girl won't be forced to renew chemo

[Judi Lynn]

Source: Associated Press

AP: Ohio Amish girl won't be forced to renew chemo
By JOHN SEEWER, Associated Press | December 6, 2013 | Updated: December 6, 2013 3:16pm

TOLEDO, Ohio (AP) — A court-appointed guardian is dropping her attempt to force an 11-year-old Amish girl with leukemia to resume chemotherapy after she and her parents fled their home to avoid treatment.

The move filed in court Friday will likely bring an end to a months-long fight between the girl's family and a hospital that began when her parents decided to halt the treatments because they were making the girl sick.

The guardian was appointed after an appeals court ruling in October gave her limited guardianship over Sarah Hershberger and the power to make medical decisions for her.

But she decided to drop the effort because she doesn't know where Sarah is and it has become impossible to monitor her health or make any medical decisions for her, said Clair Dickinson, an attorney for the guardian.

"It didn't make sense to drag this on any longer," he said.


Read more: http://www.chron.com/news/us/article/AP-Ohio-Amish-girl-won-t-be-forced-to-renew-chemo-5041962.php

[KamaAina]

1. R.I.P. Sarah

in advance.

[Scairp]

34. Hey now

The child may live, you don't know. That was bad karma.

[brooklynite]

2. I'm reluctant to weigh in on this one...

This isn't the simple "Religious zealot belives in prayer rather than medicine" story. The girl was undergoing chemo and was having a bad reaction to the treatment.

[maxsolomon]

4. Everyone I know who's gone through Chemo

has had a "bad reaction" to it. It nearly kills you until it kills the cancer.

[Xithras]

6. Unless it kills you first.

A quarter of the people who die while undergoing chemo are killed by the chemotherapy itself, and not the cancer. As the efficacy of chemo itself can be low, it's a tradeoff that every cancer patient has to weigh. Chemo will improve your odds of surviving small cell lung cancer by about 35%, but the odds are about 25% that the chemo itself will kill you. Whether the reward is worth the risk is a decision that every patient (or their parent) has to make for themselves.

If I had cancer, I'd certainly try it, but there's a point at which you have to cut it off. If it's just making you miserable, and the cancer isn't responding well, you're better off just accepting that your journey is done, and spend your last days in comfort instead of irradiated and wishing for death.

[chelsea0011]

7. It happened to my Mom. It was the Chemo that "suffocated" her heart.

But this is no way saying the child should not continue the chemo.

[Hassin Bin Sober]

9. Sure but this girl's cancer isn't anywhere close to the same as lung cancer:

"the girl's illness, lymphoblastic lymphoma, is an aggressive form of non-Hodgkin lymphoma, but there is a high survival rate with treatment."

And the parents are worried she will be infertile??

[AtheistCrusader]

10. I'm pretty sure dead people are infertile too...

[pnwmom]

16. A high survival rate with treatment -- but not necessarily for everyone.

Some people have a genetic condition that means their bodies don't process chemo the way they're supposed to. These people can be killed by the chemo itself.

Since we know nothing about this girl's situation, we can't know whether this was affecting her or not.

[Hassin Bin Sober]

19. We know medical professionals think she needs treatment.

We know religious wackos think she should pray. And are worried about an 11 year old's fertility.

I'll go with the medical professionals every time.

[pnwmom]

20. Medical professionals thought my father needed treatment.

We found out too late to help him that the treatment was killing him, because of his genes.

Unfortunately, they don't do genetic testing before giving chemo.

[slipslidingaway]

21. I'm very sorry about your Dad ...

my Mom died in the late 80's when she showed no signs of cancer, but she had become weak due to the effects of chemo. This at time when her WBC had become dangerously low and they gave her a drug used to treat depression, it did boost her WBC, but ultimately did not help. Now they use Neupogen or Neulasta, I've given my husband the Neupogen shots at critical times. We threw away about 10K in Neupogen because we no longer needed it, the hospital ordered it just in case because they said it was easier to order more as the insurance company sometimes only pays for it to be delivered to home one time. Others could have used that drug

All we can do at this point is look at the odds and try to make the most informed decision we can, reading stuff on the net can scare anyone. Those who have had a negative effect are more vocal than those who have survived and moved on, unfortunately I think that is part of society

When I searched for bone marrow transplants on DU it was not encouraging, yes it is a very small segment of society and more so on DU, but still I was curious. We just try and make the most informed decision we can given the circumstances.

Wishing you peace.

[pnwmom]

22. Thank you!

Unfortunately, medicine seems to still be almost as much art as science, with doctors and families feeling their way toward the best treatments. Hopefully continuing work on the genome will make this better, so people won't be given treatments that will only hurt them.

[slipslidingaway]

24. You are most welcome, but I'm beginning to think I'm cursed tonight ...

as I just lost my reply again.

You are right, it is an art as much as a science. Sometimes it will hurt and sometimes it will cure, finding those who can tolerate what treatment is still up in the air.

My/our journey has been insightful beginning with my Mom's cancer. My daughter was 3 or 4 years old at the time, I still remember the two of them singing songs in the hospital bed to her 'very cool sony cassette player.' Then onto my cancer diagnosis (somewhat insignificant) to my daughter's acceptance to Med school and my husband's diagnosis of MDS/AML and a bone marrow transplant. My daughter is now a third year resident and her current rotation is on the oncology unit at a VA hospital. She has attending docs that range from trying everything to those who know when it is time to let go.

I'm fairly aware of the art, science, payments for Med school, maximum out of pocket expenses for a great insurance policy that allowed us to seek the best treatment to having to sell our home to keep up with payments.

They are working on it, but it is still an art.

[pnwmom]

25. You must be so proud of your daughter.

How wonderful that she's taking your family's experience and putting it to some good. The best of luck to her!

[slipslidingaway]

26. Thanks and yes we are ...

guess maybe there was something in her years of visiting my Mom that had could have had a subconscious effect??? She was going to be a business major until sophomore year when she called and said she wanted to study medicine instead.

But I've learned first hand that they do not know when it comes to complicated matters, she was a great help with my sprained ankle ... but blood cancers? They are still practicing.

[hack89]

11. Chemo killed my father

It weakened his heart until it failed.

[pnwmom]

15. You have no idea what a "bad reaction" can be. Some people

genetically have a condition that means they can't process chemo like other people can. My father has that genetic condition. I hope I don't, because it meant the chemo killed him in the early stage of his disease when, if left untreated except for surgery, he would have probably had years left of a healthy life.

[maxsolomon]

35. my assumption is that they couldn't stand to see the child suffering

but there's not enough info to determine if the chemo was killing the child due to a genetic condition, or merely making her terribly sick. my assumption is the latter, as this cancer is a fairly common childhood/young adult cancer. i don't know enough about chemo and genetic conditions to know if the treatment alone kills kids with any regularity.

since my mother also died of cancer, as well as several friends, and all of them went through chemo first, i contend that i do have some idea what a bad reaction can be.

[maxsolomon]

3. They can't have gotten far by horse and buggy.

"Sarah's father said the family doesn't oppose modern medicine and that they didn't make their decision based on religious reasons. They end chemotherapy, he said, because it was taking too great of a toll on their daughter and she feared the treatments would make her infertile."

Yes, I'm sure an 11 year old's main concern was whether she could bear children. "If I can't have babies, I don't want to live!" No way her parents put that thought in her head, I'm sure.

I'm becoming less of a fan of the Amish every day.

[burnsei sensei]

8. A concern with future fertility seems highly inappropriate.

nt

[bpj62]

5. Personal Experience

As the father of a child who was diagnosed with Non-Hodgkins Lymphoma when he was 4 I can tell you with certainty what chemo does to the human body. Mouth sores, hair loss, discoloration of the skin, destruction of the teeth are among some of the things that my son had happen. I can also tell you that the effects generally happen 1 to 2 days after the treatment has been completed, My sons cycle was every three weeks. The body does adjust and they have much better protocols to deal with the nausea that can occur. My son survived and is now a happy and obnoxious 12 year old. I can also tell you that this girl will die if she does not continue treatment. Most Leukemia treatments for girls last 2 years. The toughest part is the induction period which is where the worst effects usually occur. it would be one thing if the child was terminal but that doesn't seem to be the case here. I will not get into the parents head hear because it is not a pleasant place to be a parent. Lets hope things work out for the best.

[deurbano]

13. Thanks for an inspiring story. My adult daughter was recently diagnosed w/ a non-Hodgkin lymphoma

and is currently on her second round (of six total rounds) of chemo. Her protocol is also every 21 days (including the 5 days of chemo each cycle). This may cost my daughter her fertility, too... but geez, her life is certainly worth much more to us-- and to her--than that. It's a rough road, but it doesn't last forever. (As your son has, thankfully, proven.) My daughter's lymphoma is very treatable, with a high success rate... just a lot of crap to go through first.

[pnwmom]

17. I am so happy about your son. I will tell you you something,

though, that I learned because of my father.

Some people have a genetic condition that means they don't process chemo from their bodies the way your son did. Those people are much more likely to be killed by the chemo than most of us.

For all we know (which is hardly anything), this girl could have been having a worse reaction than your son -- a reaction that was killing her.

[Inkfreak]

28. Happy to read your kids ok, dude.

My Pop had both Hodgkins & Non-Hodgkins. Scary shit, man. Couldn't imagine seeing that with a kid. Enjoy life!

[deurbano]

12. My 11-year-old daughter wants NOTHING to do with giving birth (herself).

Currently (at age 11), she is planning to eventually have children, but only through adoption. (I think she may have overheard me describing giving birth to her brother, including his BIG ole head!) Since my daughter is adopted, herself, maybe she thinks that's the default option for creating a family, anyway.

[perdita9]

14. I would want this option for my kid

When modern medicine can cure you, it's wonderful.

When all it does is make you die slower, it's a nightmare.

If I were to get a bad diagnosis, I wouldn't want to seek treatment.

[slipslidingaway]

18. There is not enough information to give an opinion ...

and I lost my rather lengthy reply, but will try and summarize. I think it is an important and difficult topic. Chemo makes one sick, very sick and we all hope the outcome is worth the pain. We do not know, the doctors do not know for certain, all we can look at are the possibilities. My husband was given odds of between 60-70 of surviving treatment one year out for acute myeloid leukemia that evolved from MDS if he had a bone marrow transplant, the chances were less without the transplant. AML evolving from MDS has a poorer prognosis as does a higher ferritin level going into transplant etc. as we learn quickly all the details of our disease.

He is sitting across the room from me now at 3 years plus. We are still not out of the woods, will we ever be? It is tough and there were times when I wondered if this frail person I held in my arms in a rented apartment near the hospital would make it. We are forced to make treatment decisions in a quick manner, do you want to do this trial or that trial? There are always trials. One can become 'googled out' very quickly. As the nurses remind us from time to time doctors are 'practicing' medicine. They do not have all the answers and people respond in different ways, we can only go with the odds.

We were fortunate to have access to the best hospitals under our HC plan, that does not come without some financial sacrifice in out of the pocket maximums and travel costs that need to paid. But that is a whole other story.

Wishing her the best.

[aaaaaa5a]

23. Sad story. nt

[Niceguy1]

27. I tend to side with the family

On this one. The US medical system tends to be insensitve to the different cultures that exist here. Its getting better but improement is still needed.

[CanSocDem]

29. Another victory for 'religion'...

...over 'science'. While I don't have a 'dog in this fight' in that I think they are both harmful to the human spirit, I applaud resistance to the impersonal intrusion of corporate propaganda.

We had a local case a few years back where a 13 year old Mennonite boy refused chemo (for the same reason) and took off with his parents to Mexico for Laetrile treatments. Our once progressive government ordered him back for the chemo treatment.

Of course he eventually died like we all do, but we're left with nagging doubts. It seems as though "children" have an easier time choosing between 'death' and a good life. Fear of death seems to increase with age, but if you're a child growing up in a community that teaches you that when you die you go to 'this great place called heaven', it doesn't sound so bad.

As a society I don't think we're well served by either of these institutions. They use each other to make our lives miserable by denying us our inviolate human right to grow.

Taking charge of our own personal health is an easy first step.

.

[anasv]

30. You don't know that

Any number of sensible people prefer not to have chemo. I read once that doctors themselves refuse chemo at a higher rate than non-doctors.

[CanSocDem]

32. Of course you're right.

I was being facetious in declaring a 'winner'.

.

[Yo_Mama]

31. I don't think this was religion at all

They completed one round, and then stopped the second when the girl got very sick.

http://www.washingtonpost.com/national/health-science/ohio-amish-girl-wont-be-forced-to-renew-chemo/2013/12/06/5b6dd580-5ede-11e3-8d24-31c016b976b2_story.html

Andy Hershberger, the Ohio girl’s father, said this past summer that the family agreed to begin two years of treatments for Sarah last spring but stopped a second round of chemotherapy in June because it was making her extremely sick and she feared the treatments would make her infertile.

The family’s attorney said the girl’s parents made their decision after researching the effects of chemotherapy.

I think this is a mistake, but it is possible that the kid cannot endure the chemo. It is more likely a case of internet fake science than religion - if the decision were religiously based, they never would have done the first round and started the second.

There's an awful lot of bunkum on the internet about medical matters from vaccinations to cancer treatments.

[CanSocDem]

33. The importance of "religion" in this story...

Last edited Mon Dec 9, 2013, 09:46 AM - Edit history (1)

...that I am suggesting, is that a religious upbringing, with very specific answers to most questions is easier for a child or young adult to accept, than a hazy, painful future that you've probably been told, is likely to be quite short.

Also, these two churches both have a reputation of superior compassion over other mainstream churches and the society as a whole. The parents seem 'more' willing to consider the childs physical 'desires'....

"There's an awful lot of bunkum on the internet about medical matters from vaccinations to cancer treatments."

And we can be thankful for that. The Internets free exchange of ideas has allowed us to see that suffering from someone elses beliefs is simply a choice.


.edited to replace quote.

[Katashi_itto]

36. Darwin at work. At least the genes won't be passed on.

The sheer stupidity residing in that family.