Confirmed: Sarah Hershberger's family has fled

I can guarantee you that if Sarah dies, the alt-med folks will claim she died because the hospital refused to let her try natural remedies sooner.

My aunt died of small spinal metastases. They were too small to be picked up by all imaging techniques.

Luckily (hah) for her she developed TTP from that and died from heart failure within 48 hours.

It was sudden and painful, but far less awful than a lingering death from the actual cancer would have been.

So, cancer is easily one of the worst ways to die.

Any science based methodology to prevent that is good in my books.

And the side effects of chemotherapy are orders of magnitudes less awful than dieing from cancer.

I'd tell you to ask my uncle about this, but he died. Slowly and painfully. Of bladder cancer that stopped responding to treatment.

At least he got good palliative care.

I have been trying to follow the similar, although more complicated,case of Justina Pelletier and Boston Children's Hospital. There have been accusations of the hospital "kidnapping" the child when their doctors' diagnosis disagreed with that of parent's doctors. All the coverage that I have been able to find has been agenda driven based on a public relations campaign by the hospital. I would love to read a more objective analysis of that case.

Damn it. NO MORE VACATIONS FOR YOU!

I agree that ACH is in a no-win situation: either they let Sarah die a needlessly painful death, or they take a serious PR hit by having her forcibly returned. I also agree with the lawyer's reason for not taking drastic action: it's generally considered bad form (if not contempt of court, because court orders are often stayed in such circumstances) to take drastic action while the case is under appeal. Of course, that goes both ways: ACH could move to hold Sarah's parents, and anybody who knowingly helped them flee,[1] in contempt of court. But it's more likely, and probably better from a PR viewpoint, to wait for the Supreme Court hearing and move to dismiss the appeal at that time.

[1]Of course the Hershbergers had help fleeing. If they left the US, as claimed, they would have needed the help of somebody with a motor vehicle--being Amish, they themselves don't drive, and they would look rather conspicuous fleeing the US by horse and buggy. And even if they merely went into hiding, somebody's hiding them.

I can guarantee you that if Sarah dies, the alt-med folks will claim she died because the hospital refused to let her try natural remedies sooner.

and I can guarantee you that when the natural remedies fail, and Sarah is brought back to Akron Childrens Hospital too late for last ditch salvage therapy to avert her death, that they will blame the hospital for killing her.

It's also on the heads of the Amish. They don't let their poor kids get an education past eighth grade. This is what you get from lack of access to the sort of higher order thinking skills that high school teaches. Her parents probably don't have the kind of education they need to help them understand why the woo is woo.

@ Stacy:

Altho' I agree with you- I don't think that education is the ONLY factor involved:
witness that most of the alt meddlers/anti-vaxxers I survey have secondary school educations AND many have university degrees and/or graduate ones as well.

I think that personality issues, attribution styles and COURSE of study also contribute to their choice to flee reality-bounded worldviews. See AoA, TMR etc.

Andy Hershberger has said that they will resume chemotherapy if the traditional methods fail.

And how will they know that those methods have failed? How far will they let her deteriorate before they accept the reality? And by then, it will very likely be too late.

Pris:

I’d tell you to ask my uncle about this, but he died. Slowly and painfully. Of bladder cancer that stopped responding to treatment.

My husband's great-uncle recently went that way. He survived with it for many years, often in a tremendous amount of pain. And last summer, we put our dog to sleep after he developed bladder cancer. Having seen that, I think I would rather go the way my dog went than the way my husband's great-uncle and your uncle went. Bladder cancer is pretty horrible, and it kills you very slowly. My sympathy for your family; I know how awful that is.

As a side note- I had a blood-curdling thought-

someone just pointed me to recent effotrs by (US) contrarians called 'Sovereign Citizens' to gum up the court system by proclaiming themselves outside the law- ( see Southern Poverty Law Center's work)
Imagine if and when woo-meisters and anti-vaxxers sidle up to them...
a few of them are already at their doorstep.

More than anything else, this just makes me sad. It's all I can say right now. That poor girl is going to die, and people are encouraging it.

Not only will she die,she will die a horrible painful death!I wonder if the people keeping her from the chemo, that would probably save her life feel any guilt or remorse?So sad!

@Denice

Oh, lawks. That's an interesting notion...

...although what little reading I've done about the political opinions of your average "sovereign citizen", they'd be too conservative / abrasive for your average woo-meister. Some of the anti-vax crowd, maybe...

@ Johanna:

I hear occasional memes amongst the health freedom advocates that sound eerily similar but then alt media has become considerably more political in the past few years..
Anti-vaxxers- for sure! But hopefully those ideas are still a weak force in woo.

I sincerely hope that Sarah is one of the outliers whose cancer stays gone even without the additional treatment. However, I fear I hope in vain.

As I have told you and your readers before, Orac, my son is alive because of science, after 3 1/2 years of daily, weekly and monthly chemotherapy for acute lymphoblastic leukemia.

Sure, watching him throw up a thousand times in that span wasn't particularly fun, and I wish we could have stopped the chemotherapy. But it saved him, and he is still here.

He's out of college now, and came home for Thanksgiving.

Unfortunately, he had to cut his Thanksgiving break with us short.
...
...
...
Because he wanted to go ice-climbing with friends on Mt. Washington, NH.

He would not be doing that if it were not for the chemotherapy protocol -- which now saves the vast, vast majority of kids with ALL.

Keep up the good fight.

@Denice: Yikes. I do enough lurking on political blogs to be familiar with the "sovereign citizens" movement, and even by the standards of conspiracy mongers, those people are nucking futs. I agree with Johanna that most SC types are too far out there for you average alt-med type, but yes, there could well be some overlap among the anti-vax crowd.

I'm more worried about Second Amendment fetishists, who can't be characterized as a lunatic fringe: yes, they're lunatics, but too many of them hold elective political office. I could see some of these folks overlapping with some of the more extreme alt-med types and making things a little too interesting for SBM practitioners in some parts of the US. In the Hershberger case, ACH management may be reasonable to fear that there are Second Amendment fetishists among the parents' defenders, particularly since using force to bring Sarah to treatment would be in line with some of the gun nuts' worst fears.

I sincerely hope that Sarah is one of the outliers whose cancer stays gone even without the additional treatment. However, I fear I hope in vain.

Indeed. As I've said for children in similar situations, I'd rather the quacks be able to claim that the "natural" treatments saved Sarah than read a news report that she has died of her disease. I fear that the latter, however, is much more likely.

@Doug - congratulations!

I do enough lurking on political blogs to be familiar with the “sovereign citizens” movement, and even by the standards of conspiracy mongers, those people are nucking futs.

The Hershberger's amicus might not be all that far away.

Then again, the combination of harping about the IRS and having a bee in one's bonnet over the Merciless Regulatory Bootheels Of The Man on the necks of dealers in gold and silver coins* does sort of do that for me.

* I haven't investigated the underlying regulation, so for all I know, it may well be some sort of political intrigue on the part of the "vigorous" machinations of... the Ohio pawnbrokers' lobby. I don't think this is a prerequisite to the observation.

Honest question - I remember once being told that a lot of cancer victims realistically die of morphine overdoses, they need so much to keep the pain at bay. Is there any truth to this?
I know my father's death was painful, if for no other reason than watching someone who had been a very strong, active man reduced to a skeleton who's only way of communicating was by squeezing my hand.

I very smart, educated person sent me this awful crap on Facebook. I just said it was poorly written and reasoned and sent him a link to the Thinking Person's Guide to Autism website. http://gaia-health.com/gaia-blog/2013-02-26/how-i-gave-my-son-autism/

That should begin "I just had a very . . ."

It's the 21st century, can we please have an edit feature? Please? Can we petition the National Geographical Overlords or something? Start a Kickstarter campaign to raise money for an edit feature?

Oh, right, I did have a point before getting distracted with that. The first question remains whether Ohio's supreme court is going to hear the case at all. The Hershbergers, in their appeal, have advanced a broad collection of prongs.

In short, the idea is that they would like decisions on (1) who has the right to withdraw life-sustaining care, (2) a fanciful argument that "custody" includes medical care, so there's no such thing as medical guardianship,* and (3) an overarching attempt to summon the semantic Shai-Hulud with "'Abuse of discretion,' what does it all mean?"

* Good luck with that one, Oberholtzer.

Eric Lund:

"I’m more worried about Second Amendment fetishists, who can’t be characterized as a lunatic fringe: yes, they’re lunatics"

There are indeed some strange people who are obsessed with the second amendment and their gun collection. There are also people who have strange obsession with and wish to eliminate the tradition of private gun ownership, which predates and was essential to the formation of the USA.

Both are a distraction from the issues addressed by this blog.

Spectator -- I'm sure there are people who want to "eliminate the tradition of private gun ownership", but there are far, far more who only want to make it less trivially easy for any random lunatic to lay his hands on the kind of arsenal that makes it child's play to wipe out an elementary school. Yet is seems that ANY regulation of firearms, no matter how reasonable, is beyond the pale to many, who conveniently forget the words "well-regulated".

And these folks have such political clout that any fears that the "tradition of private gun ownership" is about to be eliminated are, well, paranoid.

@meg: no. In the perfect world, persons with cancer in a lot of pain receive enough medication to keep them at a level of comfort they choose. However, your body develops a *physical* tolerance to morphine and similar drugs, so the doses keep going up to keep the person comfortable. Those dose would kill anyone who hasn't developed the physical tolerance. But few die of a morphine overdose - unless intentionally/planned.

(I say in a perfect world, because, far too often, people worry about drug dependence and overdoses, and most cancer patients are underdosed and experience more pain than necessary, than they are overdosed.)

Also - most morphine/similar overdoses lead to respiratory depression which is reversible with medication.

I remember once being told that a lot of cancer victims realistically die of morphine overdoses, they need so much to keep the pain at bay.

More the case, I suspect, that doctors and nurses may have moral or legal issues with assisting euthanasia, so it is labelled as "pain control" instead ("intentionally/planned", as MI Dawn says).

A few doctors have told me they have deliberately hastened the deaths of terminally ill patients with opiates. Strictly speaking this is illegal, but it is both hard to prove and pointless to prosecute. I hope I have a doctor like that should I ever be in that situation.

Walking Dead SPOILER ALERT

On a lighter (?) note I just watched the mid-season finale that stemmed Orac's logorrhea, and now I'm reeling from the deaths of two disabled men and at least one child, also a woman shot between the eyes by a child. It's shocking that this is what passes for entertainment these days? ;-)
(I thoroughly enjoyed it, truth be told)

@Kreb - the show is called "The Walking Dead" and you are surprised?

I also never really thought of the Governor as "disabled." A psychopathic killer, yes. Disabled, no. And, yes, I know the character is missing an eye.

@ Krebiozen:

re what passes for entertainment these days

But seriously, aren't these things easier to write? Actually, they sort of write themselves because of the inherent rules governing their vicissitudes.
You know, if your story comes to a dead end, throw in a couple of vampires or zombies, a dismemberment or two -*et voila!*- Instant audience engagement! Excitement!
Blow up a building- or six in a row blowtorched- and you've got the first 15 minutes taken care of neatly already.

I joked that I might be able to create more realworld interest by writing about a group of moody, young adults who ( mistakenly) thought that they were vampires or that vampires lived down the street and were after their blood- but it was all in their extremely confused minds. -btw- they'd have great costumes.

About 20 years ago, there was an article in the Economist (or the New Yorker) that included reminiscences by a colleague of Tolkien: JRR gave him early drafts of his work- usually, the tale revolved upon certain characters' magical presence or actions-
causing the bewildered colleague to remark,"Oh f@ck, not another elf!"

Krebiozen: "A few doctors have told me they have deliberately hastened the deaths of terminally ill patients with opiates."

Which would mean fiddling with the equipment. My mother-in-law had back surgery a couple of months ago and was put on morphine. She was out of it enough that when she tried calling the nurse but was pushing the button for the on-demand morphine instead of the call button.

This freaked us out a bit, until someone told us there is a prescribed limit and it stops dosing even if the patient is pounding on the button.

Two wonderful friends of mine are currently living at Princess Margaret Hospital seeing out the final days of their little boy's life.

They would give anything to be in the position of being able to treat their boy and have an 85% chance of saving his life. When the surgery and chemo didn't work and he developed a lung infection I watched them collapse physically and psychologically.

I am a psychologist - I understand the reasoning behind the Hershberger's poor choices but the thought of a child losing their life because of them is intolerable.

David Michael
9 minutes ago
VERY HUGE-- First and Only --Exclusive Interview with Andy, Anna and Sarah Hershberger, the Ohio Amish Girl's Force Chemo Case who escaped to Central America to seek natural, humane cancer treatment-- now 100% cancer free-- yet Hospital and Court want chemo to continue. WOW! This is what Good Morning America and all the others wanted but I got it! I will broadcast it tomorrow. You must comment here to be the first to hear it!!!
Like · Share From Mr. Augusteins facebook,This truly makes me ill!

Got a link to David Michael's announcement?

Facebook David Michael Canton

Try facebook.com/Mr.Augie?fref+ts

Krebiozen:

A few doctors have told me they have deliberately hastened the deaths of terminally ill patients with opiates.

When my paternal grandfather passed a couple of years ago, he was prescribed liquid morphine, to be taken basically as he saw fit. He believed in assisted suicide -- but he also believed in not making trouble for other doctors (he was a retired general surgeon) so he stubbornly made sure he wasn't taking enough to kill himself. Just enough to keep himself comfortable as he awaited the end. That was one stubborn, stubborn man. ;-) I miss him, but he went with such grace and dignity I can't really say I'm sad about it. He went as he wanted to go, and how seldom is the chance for someone to do that!

MI Dawn, Krebiozen, Herr Doktor - thanks. I figured it was something like a mix of what you say.
In the meantime, here's a good story of SBM treating a little one, the son of a friend of friends. Little Jack is doing well.

MI Dawn, Krebiozen, Herr Doktor - thanks. I figured it was something like a mix of what you say.
In the meantime, here's a good story of SBM treating a little one, the son of a friend of friends. Little Jack is doing well.

The idea that if alternative therapy fails, you can come back to standard therapy as if no time had elapsed, and as if no further genetic degeneration had occurred in the cancer cells, is crazy. But perhaps it's the line of thinking taken by the aggrieved parents. It is purest denial, since it's based on refusing to know anything about the disease. To those who have been following the improvements in therapy over the decades, starting from the time that this was considered an automatic death sentence, it's infuriating. At the same time, I wonder if this girl had a particularly difficult time of it, and the parents, being the gentle sort, couldn't bear it. I would prefer to think that of them rather than see them as engaging in manslaughter. But in any case, their grasping at alt therapies is going a step further; still, it's in its own way a face saving maneuver.

Denise: This is not to nitpick, but to respond to the comments about television writing. To do it well is not that easy. Jane Espenson is a respected writer down here who did a blog intended to help young writers. I find much of it fascinating. You can find the archived material in the pasted link. The only problem is that if you want to read it in the order it was presented, you have to start from the earliest pages listed, and follow them upwards by date. And if you are a real purest, you start at the bottom of each blog page, since it's a blog.

http://www.janeespenson.com/archives/

Which would mean fiddling with the equipment.
Equipment? [Yorkshire accent] LUXURY. [/Yorkshire accent]

Lawrence,

@Kreb – the show is called “The Walking Dead” and you are surprised?

Orac,

I also never really thought of the Governor as “disabled.”

and Denice,

But seriously, aren’t these things easier to write?

I'm just kidding about being shocked (except about losing two major characters), and about the two men I mentioned being 'disabled', though strictly speaking they both were.

I watched the first episode shortly after it aired, experimentally because I'm not normally into the zombie genre or horror generally, and I was instantly hooked. Despite the gore (and there is plenty), I was surprised to find it is high quality, complex, intelligent drama, more about the way extreme adversity affects the characters' behavior and relationships, than about the zombies themselves. I doubt this was easy to write at all.

Chris,

Krebiozen: “A few doctors have told me they have deliberately hastened the deaths of terminally ill patients with opiates.”
Which would mean fiddling with the equipment. [...] there is a prescribed limit and it stops dosing even if the patient is pounding on the button.

This was several years ago, and the technology may have changed since then, but who prescribes the limit? In end stage cancer, as I understand it, a pain-relieving dose of an opiate is very close to one that will depress respiration enough to end the patient's life. There's a gray area here that probably doesn't get talked about enough.

If you know any doctors socially, ask them quietly if they have ever administered a dose of opiates knowing it was likely to end a patient's life, and I think you may be surprised.

I think Meryl Dorey of the infamous Australian Vaccination Network has tried the "Sovereign Citizen" or "Freeman of the Land" argument before, and has been laughed and pointed at.

http://www.scribd.com/doc/142864873/Document-Release-Exposes-Meryl-Dore…

It would be news if _anything_ Meryl Dorey said wasn't worthy of scorn.

Obvious examples include likening vaccination to "rape with penetration" and claiming that no one ever died of whooping cough.

Krebiozen: "In end stage cancer, as I understand it, a pain-relieving dose of an opiate is very close to one that will depress respiration enough to end the patient’s life."

Well, it was back surgery. Realigning lower vertebrae and adding some titanium pins. Not exactly end-stage.

@ Bob G:
@ Krebiozen:

I was mostly being facetious BUT you have to admit that there are many examples of what I'm talking about particularly in the young adult supernatural genre.
Actually I watch very little television series because I've seen so many deteriorate into gun battles/ gore fests/ explosions etc.

Perhaps even decently skilled writers who can explore personality and interaction have to create horror/ crime epics because of audience demand- that's why we see snippets of realism within the bloodbathed, bullet orgies.

Bob G:

At the same time, I wonder if this girl had a particularly difficult time of it, and the parents, being the gentle sort, couldn’t bear it.

I wonder if this girl had a particularly difficult time of it because her woo-believing parents refused to use modern medicine to alleviate the side effects of chemo and forced her to go through it on teas and herbs and such.

Poor kid.

Fail - that first line is quoting Bob G.

@Kreb et al

When my husband was dying of colon cancer, the hospice nurse provided a pint of liquid morphine, a graduated pipette and a dosing guide - and a wry look and a shrug regarding the latter two items because, well, it wasn't like long-term addiction was going to be an issue. "If he's hurting, give him something if he can still swallow it." and that's what I did.

What actually bothered me, really, was afterwards. "How do I dispose of this half-pint of street-valuable medicine?" I asked. "Oh, just toss it in the trash." Ummmno...

Chris,

Well, it was back surgery. Realigning lower vertebrae and adding some titanium pins. Not exactly end-stage.

I wouldn't generally support euthanasia after back surgery, however much the patient might disagree. ;-)

Denice,

I was mostly being facetious BUT you have to admit that there are many examples of what I’m talking about particularly in the young adult supernatural genre.

I couldn't agree more, which is why I was so surprised by the quality of The Walking Dead. Health problems and aspirations as a writer have combined to make me something of a connoisseur of TV drama in recent years.

Johanna,

“If he’s hurting, give him something if he can still swallow it.” and that’s what I did.

That must have been a difficult experience, but thank goodness we have powerful painkillers. I shudder to think what it must have been like a couple of hundred years ago.

What actually bothered me, really, was afterwards. “How do I dispose of this half-pint of street-valuable medicine?” I asked. “Oh, just toss it in the trash.” Ummmno…

I'm reminded of working in a radioimmunoassay lab and being told to pour waste iodine 125 down the sink. It just doesn't feel right.

@Pareidolius:

About that web article: http://gaia-health.com/gaia-blog/2013-02-26/how-i-gave-my-son-autism/

I remember this ludicrous article when it appeared on the web a while back and note there are actually some posts that got through counter to the usual mantra. Heidi Stevenson has considerably tightened up her blog comments structure so it's now practically impossible to post counter to her dogma. Even if you do get a comment in, it's heavily moderated and/or attacked with burning stupid. I'm proud to boast that I was called a "Phama Shill" once on her blog a number of months ago!

@Krebiozen #58

I’m reminded of working in a radioimmunoassay lab and being told to pour waste iodine 125 down the sink. It just doesn’t feel right.

One place I used to work in had a designated "hot sink," in which we were allowed to dispose of small amounts of radioactivity, typically things like blot washes (back in the hot blot days). But we had to get approval from the RSO and log what we disposed and we did have limits.

In contrast, I once received a thallium perfusion scan, in which I was injected with 5 millicuries of thallium-201 and then sent home, without having to collect and properly dispose of my resumed radioactive waste, so that always put the amounts I used to use in the lab in perspective.

@ Krebiozen:

In the late 1980s I had an opportunity to write detective screenplays for an older guy who produced films in the US and Europe- he had been married to a famous woman writer and had lots of disposable income. He had had some success already in this genre with another grad student writer.

I couldn't imagine myself doing this PLUS I always had income because I inherited commercial property from a childless uncle- so the money didn't seem important either.

I enjoy writing but I've never viewed it as an occupation although I needed to write as part of a job at a non-profit where I counselled people and in advertising, which was very simple stuff.

But really, you should do something with it-
you have so many qualities that translate well to the page and I don' just mean writing about science either. Sometimes when illness / injury slows people down, their other qualities flourish. I suppose it's like looking towards outdoor activities when it's warm and more cultural indoor interests when it's colder .

I’m reminded of working in a radioimmunoassay lab and being told to pour waste iodine 125 down the sink.

Whiskey Tango Foxtrot. That's illegal in many jurisdictions, including where I live and work. (One of my past work projects required me to get a radiation worker certification, which I have to renew annually because my name remains on the official list of people with that certification.) You're supposed to have a designated container for each isotope you work with, at least where I work.

Disposing of legally obtained medications in ordinary trash probably isn't (assuming it doesn't qualify as a biohazard), but as Johanna implies, is merely a very bad idea.

@Eric L

It's particularly a bad idea when one lives in an area where trash cans get regularly searched by unsavory folks looking for thrown-out prescription medications - either to take themselves or sell on. Even tossing out an expired bottle of vitamins would result in trash all over the driveway...

My sister in law would put old pills into a ziploc with liquid detergent and then put them in the trash, but I would worry about landfill/groundwater concerns and took 'em to a pharmacy that accepted old 'scrips...

We treated iodine 125 as one of the more toxic substances and used all the standard precautions including a designated hood, plexiglass shielding, gloves, and film badges. We also got a thyroid scan every month, if I recall ("neck check"). The vegetarians always showed up higher on the neck check for the radioactive potassium emissions, which are background for all of us. As for iodine 125, the stuff was great for following peptides as they bound with cell surface receptors, and as a tracer in cross linking studies. We never poured it down the drain, but saved the waste. It was given over to the Rad Safety Officer, who kept it the requisite 10 or 20 half lives, and then discarded it. If you kept the waste long enough to allow it to decay down to insignificance, then pouring it down the drain would have been OK, and the half life is short.

We did pour tritium down the drain, provided it was below the regulatory limit, washed down with lots of water. You still have to log it, but it's legal in the US.

Re: the I125, this was the UK, and it was (probably still is) perfectly legal to pour it down a sink into the domestic drainage system, as long as it was flushed with plenty of water - the amounts involved were fairly small, though we did iodinate our own antibodies which involved the stronger stuff. We had film badges, used gloves and a hood etc., and had regular thyroid scans too (in a scanner made from a WWI battleship without radioactive contamination), which made it seem even stranger to dispose of it so causally.

@ Denice,
Thanks for the encouragement. I have a number of projects on the go, several that involve varying amounts of writing, that are starting to look like they are going somewhere.

If you know any doctors socially, ask them quietly if they have ever administered a dose of opiates knowing it was likely to end a patient’s life, and I think you may be surprised.

I nearly got around to it last night, but if TV programs are to hand, I'm reminded of "House" episode "Known Unknowns." (I also didn't know that it had been canceled 20 months ago.)

Orac,

That is the problem. It is anecdotal evidence based upon experience of a previous generation using a scorched earth treatment technique. It is not much different than scientific justification used in other professions, and it may not be as gospel as we were told it was. I assure you the drug company researchers aren't trying to reduce the use of their product.

If you had 100% conformance to the standard regime, you would have no control variables. You would therefore have no way to support/refute their data. Is this what they want? Two rounds may be sufficient in certain cases.

One mustn't look much further than Obesity and diabetes as well as all the other trendy psychiatric problems/allergies or the ever increasing length of our food ingredients to see something is awry. Pregnant women are prophaliticaly prescribed vitamins here!

The Amish by mitigitating their exposure to modern FDA/AMA recommendations may be a lot smarter than the rest of us.

http://articles.chicagotribune.com/2001-10-21/news/0110210182_1_amish-b…

No, it is not based on anecdotal evidence, not anymore. It started out as anecdotal evidence back in the 1960s that tumors would recur after short courses of chemotherapy, but by the 1970s randomized controlled clinical trials were being done that demonstrated the superiority of adding more courses and different regimens of chemotherapy. These trials continued over decades. The end result is the 85% or better five year survival rate for this type of tumor. Moreover, this is pretty close to equivalent to the long-term survival rate, because recurrences after five years are uncommon. Now, in 2013, many chemotherapy trials are "in reverse," as in designed to see if shorter courses of chemotherapy with fewer drugs can achieve the same excellent results with lower toxicity.

One mustn’t look much further than Obesity and diabetes as well as all the other trendy psychiatric problems/allergies or the ever increasing length of our food ingredients to see something is awry.

Wait what? Obesity and diabetes and trendy allergies prove that oncologists are wrong about cancer recurrence? Food ingredient names are too long? What?

One mustn’t look much further than Obesity and diabetes as well as all the other trendy psychiatric problems/allergies....

Diabetes is a trendy psychiatric problem?

The Amish by mitigitating their exposure to modern FDA/AMA recommendations may be a lot smarter than the rest of us.

If you could tie back to the "modern FDA/AMA recommendations" in favor of obesity, it might help to clear things up.

Jeff,

I assure you the drug company researchers aren’t trying to reduce the use of their product.

I don't believe you, I think they want their products, and their recommended use, to be shown to be as safe and effective as possible. I'm sure they are also trying to find safer and more effective treatments before their competitors do. Don't fall into the trap of thinking of 'Big Pharma' as a single monolithic entity; it consists of thousands of companies all competing with each other in a cut-throat industry. There is no gentleman's agreement to avoid putting each other out of business, quite the opposite.

If you had 100% conformance to the standard regime, you would have no control variables. You would therefore have no way to support/refute their data. Is this what they want?

Firstly, we don't need any more untreated control groups for childhood ALL, since we know from historical records precisely what happens if it is untreated or if only one or two rounds of chemotherapy is used. Conventional treatment is the best we have at present and is the ethical control group to use.

Secondly, a child who has (been) withdrawn from a clinical trial part way through does not become part of the control group, she will remain part of the 'intention to treat' group, and will, if anything, make the data less useful.

Bottom line: another dead child is not going to give us any more useful information.

These chemotherapy protocols for diseases like lymphoblastic lymphoma and the closely related acute lymphoblastic leukemia (ALL which my son had) have developed over time, gotten more and more precise, and the EFS rates have gotten higher and higher.

Looking back at earlier iterations of the protocols, science could prove to you that if you stop after one course, maybe 25% do not have a relapse. Stop after six months, maybe 50% don't have a relapse. A year, maybe 65%. Full course of current treatment, 85%. (Numbers are made up, for demonstrative purposes.)

The cancer is microscopic, and no test readily available can find every remaining cancer cell in the patient's body.

So, your kid has been on treatment for 6 months, are you going to risk that she is one of the 50% that don't need any further treatment, or complete the treatment and have the reassurance of 85% EFS rates?

@BobG -- "I wonder if this girl had a particularly difficult time of it because her woo-believing parents refused to use modern medicine to alleviate the side effects of chemo and forced her to go through it on teas and herbs and such."

On this, I do have to comment that sometimes there is just nothing modern medicine is going to do for you when the chemo is killing the lining of your mouth, esophagus and stomach (because the mucosal linings are fast-growing cells). We used every anti-nausea drug under the sun, and there were still many times that nothing would stop the throwing up.

Bottom line though, it is child abuse, pure and simple, to not give your child the best shot at a cure.

Jeff:

One mustn’t look much further than Obesity and diabetes as well as all the other trendy psychiatric problems/allergies

Because obesity is so trendy, right? And diabetes is all in your head?

or the ever increasing length of our food ingredients to see something is awry.

Yeah, it was so much better when the FDA didn't force them to list all of their ingredients!

Pregnant women are prophaliticaly prescribed vitamins here!

Because spina bifida is *awesome*!

That's basically what you're saying, Jeff. I doubt it's what you meant, so maybe you'd care to enlighten us. As it is, just sounds like a series of disconnected rants.

Stop talking down to us. We don't believe you anymore. Some of us may die from cancer, but we do NOT have to suffer from the horror of chemotherapy. It's liquid mustard gas, used in WWII as "biological warfare", and then re-labeled and re-used as "medicine". Come ON! Who the @#$# do you think you're fooling anymore? It should be our choice. And I believe those Amish people made an educated and compassionate choice.

I found this in an article by The Ohio Liberty Coalition
The Court made this ruling even though Sarah’s mild form of cancer is a type that can and is being treated without chemotherapy, and despite conceding that chemotherapy may well cause loss of hair, infections, infertility, cardiovascular disease, damage to internal organs, an increased risk of contracting other cancers, and even death.

I found this in an article by The Ohio Liberty Coalition

That's from the 1851 "Center" (viz., Maurice Thompson), who coughed up an amicus brief that I haven't gotten around to looking at.

@ Angel

Do you mean this article? They simply assert that Sarah has a "mild form of cancer" without offering any evidence or even mentioning what kind of cancer she has. Please see Orac's original, much more thorough post on this topic. The bottom line is - this girl had an 85% chance of survival with chemotherapy, and essentially no chance without it. It doesn't get much more black-and-white than that.

Also, I don't mean to be nit-picky, but when you're quoting directly from a source its important to make that clear, using quotation marks or italics.

@orac,
Do you have an abstract for a "reverse study"?

@calli,
They are connected. Watch this and tell me what you think.
http://m.youtube.com/results?q=sugar&sm=3#/watch?v=dBnniua6-oM
Listen to what he says about type ii diabetis, and it looks like a correlation has been shown for spinal bifida.
Take the money from the vitamins and buy better food.
http://foodbabe.com/2013/06/06/victory-ny-times-posts-kraft-mac-cheese-… UK warning label on US imported food.

@sarah,
Nowhere in this blog has anyone posted probability for stopping after two rounds yet. It is not black and white. Using Doug's #'s ( still no source! ) would be 75% as opposed to 15% using the full regime. The full regime having other complications. Obviously a risk/benefit analysis would argue in favor of the treatment depending upon how you weigh things and *confidence in the data*. what is your threshold of benefit for depriving someone of their liberty to choose for themselves?

Competition requires a properly functioning marketplace consisting of full disclosure! And of course we are supposed to believe their staff statisticians. Are the ones who don't agree not promoted?
Kind of like the analysts at the rating agencies on Wall Street who wouldn't give the derivatives the correct rating.
Anyway, good read here.
http://www.livescience.com/8365-dark-side-medical-research-widespread-b…

@ Krebiozwn, How will she no longer be part of the study? It sounds to me like she will be the only one to receive a partial treatment. What if she lives? Maybe it will be a new avenue of research based upon a successful outlier. maybe more people will stop halfway, and there will be enough points to show with confidence the full schedule is not necessary.

of course if they can still maintain profit margins when they only sell half as many units. Otherwise we will never see the paper.

Do you mean this article? They simply assert that Sarah has a “mild form of cancer” without offering any evidence or even mentioning what kind of cancer she has.

I think Angel's been following these posts. Again, that's just regurgitated from Maurice's joint, styled as a press release. Their amicus brief is here (PDF; I always have to change the extensions on these from .php to .pdf by hand).

OK, I've skimmed the brief. It's... not good. In the "wasting the court's time is a really bad idea in an amicus" sense. In the "We've already heard of Yoder, moron" sense. In the "the self-promoting URL in footnote 1 doesn't even work, dumbsh*t" sense. In the "Why the f*ck are quoting endlessly from the documents we already have at hand?" sense. In the "why in G-d's name are you babbling about a Delaware case that involved religious objections when there aren't any here?" sense. In the "did it ever occur to locate someone who could proofread this?" sense.

I thought I might have seen like two paragraphs in 18 pages that were even close. It's a disaster.

^ Should've closed the boldface after "any here?"

Jeff,

@ Krebiozwn, How will she no longer be part of the study?

I said she will remain in the study (obviously not physically, but her results will probably be included in the study), as part of the treatment group. In clinical trials patients don't just jump into the control group because they quit the treatment for whatever reason. In any case, the control group does not consist of patients who quit after two rounds of chemotherapy.

It sounds to me like she will be the only one to receive a partial treatment. What if she lives? Maybe it will be a new avenue of research based upon a successful outlier. maybe more people will stop halfway, and there will be enough points to show with confidence the full schedule is not necessary.

We already know what happens if patients only get partial treatment: they have a much greater chance of recurrence. This is why this regimen was developed, because decades of experience has proven that the full schedule is necessary. . Orac explains it in detail in this blog post, I suggest you read it as I don't think you understand the situation properly.

If she survives it will tell us nothing. We already know that a small minority of patients will survive with just one round of chemotherapy, but we have no way of telling which these patients are. One patient surviving is not useful information, which is why we have clinical trials that include as many patients as possible, so we can eliminate chance as much as possible.

It sounds to me like she will be the only one to receive a partial treatment. What if she lives? Maybe it will be a new avenue of research based upon a successful outlier. maybe more people will stop halfway, and there will be enough points to show with confidence the full schedule is not necessary.

So, like Andrew Wakefield, you'd deliberately give a young child a course of medical treatment that everything science knows currently says is not in the child's best interest, for the purpose of medical experimentation? You want to leave Sarah Hershberger untreated because, hey, if she lives, that'll prove your ideology right, and that justifies her dying in a very painful way if your ideology isn't right?

And amazingly, you still think you're the good guy here.

@Sarah,Sorry I didn't use quotation marks in my last comment but it peeves me off to think that any form of cancer can be mild.Especially the cancer that Sarah has.I have seen how aggressive her form of cancer can be.If you have been following her story you will see that a lot of the people involved are exploiting her and her illness for their own agendas and frankly it turns my stomach!

Consider the failure of convincing them to tolerate painful treatments vs. tuffing it out like Orak. I value the childs life but can't imagine you taking my child from me. Convince me with empathy for my situation of clarity, belief structure or whatever. It''s not that my child is my property, rather it's that nobody cares more than I. And as hard as that is for some to understand haven't been in that war. Orak, did they make your philosophy available to the parents? Surgery for Cleft lip means a hospital stay and no parents want that, we put them with a mom and baby with corrected lip and let that mom tell the other mom how hard it was but now they are glad....just like you. .m.l. ransom canyon

@Jeff

"How will she no longer be part of the study? It sounds to me like she will be the only one to receive a partial treatment. What if she lives? Maybe it will be a new avenue of research based upon a successful outlier. maybe more people will stop halfway, and there will be enough points to show with confidence the full schedule is not necessary.

of course if they can still maintain profit margins when they only sell half as many units. Otherwise we will never see the paper."

We ALREADY know that without the full treatment SOME would survive, and many would die. Let me explain to you how these chemotherapy protocols have been developed over the last 40+ years.

Bunch of scientists and doctors came together and said -- OK, what is the best survival rate we have for a specific type of treatment for lymphoblastic lymphoma? One doc says 15%, another says 18% and one says 20%.

OK, they all agree to enroll new patients into a clinical trial. All get the current standard of care treatment -- which at the moment saves only 20% of the kids. They split the trial into three groups, A, B. and C. Group A gets the current standard of care PLUS six months of drug X; Group B gets the current standard of care treatment plus 12 months of drug Y; and group C gets just the current standard of care treatment.

Group A --- 30% of the kids now survive.
Group B -- 37% of the kids now survive.
Group C -- only 20% of the kids survive.

So, they then go onto a new clinical trial. All of the groups now get the prior Group B, which is now the standard of care. And they divide it into groups, and see how many kids survive with each type.

AND LOTS OF KIDS DIED over the last 50 years getting the chemotherapy success rates to where they are these days.

So, they KNOW that if they only give a small portion of this treatment plan to kids, a much larger percentage of them are going to die. Oh, this particular kid might be one of the ones to survive. But if you convince 100 of these kids to stop their treatment, many more of them are going to die than if all of the kids got the current full standard of care treatment plan.

And if by some miracle this girl is one of the ones who does survive, it will be because of the chemotherapy that she has already had, not some woo and witchcraft and hope and magic and alternative treatments. Not a single one of them has ever been shown , through controlled scientific experiments like the 50 years of clinical trials these chemotherapy protocols have been refined through, to save a higher percentage of kids than the current standard of care chemotherapy protocols. Not once. not ever.

No parent has the RIGHT to say, for their child, "I would rather pick a treatment that might be 30% effective, rather than the 85% effective treatment, because I can't stand for them to throw up so much, and I can't stand for them to lose their hair" (which grows back, BTW).

It's a simple as that. No one has the right to consign their child to a likelihood of dying by not pursuing proper treatment. (If the parents themselves had the cancer, they can make any decision they want, and can decide not to have the treatment and die quicker.)

@Mark,Consider the pain of watching your child die in an unimaginable amount of pain,that you can do nothing to stop.Then imagine the realization that you could have prevented not only that pain but also her death!These parents are in for such a long road ahead.They are in a no win situation now. And unfortunately it will be their daughter who pays the ultimate price!

I value the childs life but can’t imagine you taking my child from me.

Of course, the only ones who seem to be advancing a case for taking Sarah away from the parents is the parents themselves, by way of their peculiar memorandum arguing for the Ohio supreme court to take up the matter.

The actual decision was for a limited medical guardianship. Custody was not at issue in the slightest, even in terms of traveling to and from the hospital.

Mark Lawson di Ransom Canyon: "I value the childs life but can’t imagine you taking my child from me"

So how many times have you climbed into the hospital bed/crib to be close to your child while they are connected to lots of tubes and electrical sensors? I did it often during his first four years... it was not appropriate when he was twenty four years old.

A simple question: why do you think you know more than those who have gone through medical school and have treated many other similar patients?

A simple question: why do you think you know more than those who have gone through medical school and have treated many other similar patients?

He's in it for the same reason that Maurice Thompson is. Perhaps it's making the rounds.

Krebiozen: One last story about I-125 and doing iodinations. We were using a moderately sized peptide (around 20 aa, if I recall correctly) that had a couple or three tyrosines, so we figured it would label up nicely. It did. The only problem was that we got a lot of background labeling -- the non-labeled peptide would not block binding, even at fairly high levels. So I got the bright idea of running the freshly labeled stuff over HPLC, since we had a machine available, and what the heck. Figured that if nothing else, we could separate different amounts of labeling; perhaps a double label created steric hindrance for one of the tyrosines that wouldn't be a problem if the label were solely in the other. You may remember that the iodine atom is about the size of the entire aromatic ring, so adding it to a peptide can sometimes be nontrivial. Not like C-14 or tritium at all. So anyway, the HPLC worked great, and one of the peaks turned out to be a beautifully specific label that was competed off in the range of maybe ten nanomolar or so. An excellent result and a publication on a project that had been hanging for far too long.

And I got perfect hell for the fact that the HPLC injection valve got nicely labeled up with I-125, even though it was essentially stainless steel and teflon. Fried eggs shouldn't stick to it, but you could hold the Geiger counter up to it and watch it sing. The complaints came from another group that shared the HPLC. It was easy to get away with it the first time, but when we wanted to repeat the labeling . . .

Regarding Jeff's comments and questions, I can take an initial question that sounds well intended if perhaps a little unschooled. Not everybody is going to be educated in peptide chemistry. But when somebody comes back with an equally wrong argument or series of (seemingly taunting) questions, I'm going to start viewing it as trolling and ignore it. I mean, you have to be trying pretty hard to ignore the previous discussions about 50 years of research and experience, and dive right in as if it were still 1962,

And lastly, speaking of way back around then, I can remember a film we were shown in school (they still had these 16 mm film projectors) that showed an ambulance in traffic with a voice over explaining, "This is the City of the Angels, but sometimes the angels are looking away . . . " or something like that. I think it was about the City of Hope and research on childhood leukemia. It was pretty grim stuff for an elementary school classroom, but we all got the message that hardly anybody survived. The idea that these many years later I would be typing about a high cure rate would have seemed fantastical at the time. By the way, the reference in the movie to City of the Angels was a reference to the fact that the City of Hope is in the greater Los Angeles area, even if it is actually in Duarte.

http://drrimatruthreports.com/children-sentenced-to-death-by-clinical-t…
And yet another spreading slander about ACH and trying to benefit from this little girls situation.Unbelievable!!

nd yet another spreading slander about ACH and trying to benefit from this little girls situation.Unbelievable!!

I take it you're not familiar with Rima Laibow. She's a New World Order conspiracy crank, and long ago announced that "The Great Culling" was imminent.

@Narad,No fortunately up to now I avoided all contact with people of that caliber.Believe me,If I didn't personally know the people involved I would keep it that way.The world is full of idiots!!

@Bob g #92: if you can stand another iodination story -- I was labeling a peptide but it just one tyrosine. I purified it from the unincorporated label using a disposable C-18 cartridges, but nevertheless, we wanted to make sure that the label was all in one component, so we looked for somebody that would let us run a few counts on their HPLC. Even though we offered to bring our own column, we got a few polite declines, but someone suggested, "I think X's lab has a "hot" HPLC they might let you use."

So sure enough, in the corner of the lab they had an old Beckman HPLC with a bunch of lead shielding and radioactive warning labels all over the place, and they had no problem with me running a sample. So I injected about a thousand counts of peptide, thinking that should be plenty enough to pick up even if it came off in a few peaks, and after all, I didn't want to abuse the privilege. After the run, I took my fractions over to the gamma counter, and watched in astonishment as the background level of counts in each fraction began at a couple thousand and just slowly climbed with the gradient elution.

"Geez, what do you guys use this thing for?"

"We synthesize our own radioiodinated [small molecule they cared about] and purify it on that machine."

Turns out they pumping millicuries of label through it, and I just though all the shielding around it was because they were being overly cautious,

There seems to be some misinformation. Sarah IS receiving treatment for her cancer, albeit nontraditional treatment. It is treatment that has been shown to work repeatedly and is done under the care of medical professionals. It's not a sure thing, but then neither is chemo. What is certain is that it will not ravage her body like chemo will.

This is not a case in any way similar to offbeat cults who believe that faith will save their children and refuse treatment. Amish people do seek medical treatment. Nor is it a choice between chemo and death. Her parents made an informed decision (her grandfather has also cured his cancer through alternative treatments).

You seem to know something that everyone else doesn't. Perhaps you could tell us what specific "nontraditional treatment" of her tumor Sarah is receiving. Then we can judge whether it is effective. Of course, it's almost certain that it is not, because, unless something's changed since the last time I checked, there is no effective "nontraditional treatment" for Sarah's form of cancer.

Her parents made an informed decision (her grandfather has also cured his cancer through alternative treatments).

So her grandfather has been practicing medicine without a license? Great, thanks.

However, I don't think there's been any "misinformation." Raw Milk Gimme-20%-Guy has already reported the litany of known horsesh*t in play: "high doses of vitamin C and B17 [sic], oxygen therapy, detoxification methods, as well as the IV chelation to deliver some of these to Sarah’s bloodstream." I suppose this was prefaced with "including," so one may properly imagine it's actually worse.

Oh, wait, I missed the "his" between "cured" and "cancer"; please scratch the first sentence above:

So her grandfather has been practicing medicine without a license? Great, thanks.

However, I don’t think there’s been any “misinformation.” Raw Milk Gimme-20%-Guy has already reported the litany of known horsesh*t in play: “high doses of vitamin C and B17 [sic], oxygen therapy, detoxification methods, as well as the IV chelation to deliver some of these to Sarah’s bloodstream.

Link please. I must have missed this.

Link you shall have.

I suppose one other question that I haven't seen asked, given this "foreign doctors" and fleeing-the-country business, is where the f*cking passports came from? There is a time element in addition to the nominal "religious" question.

^ It appears that IRS Form 4029 or a birth certificate will do.

^ To return, that is. As I've said before, the constellation of practical matters winnows the possible locations of the quack clinic. The Mexican border still seems good.

Angel
And yet another spreading slander about ACH and trying to benefit from this little girls situation.Unbelievable!!

I think it was commenter Dangerous Bacon who introduced me to the wonders or Dr Rima. She is sufficiently blatant with the opportunism and the piggy-backing on other people's scams that other conspiracists are wondering whether she's a False-Flag Operation, working for the gubblement to discredit the movement.

I must say that "ozone rectal insuflation" is a new one on me.

So the hospital is backing down so Sarah can come home.All the do gooders are patting themselves on the back and yelling victory.My question is ,for who?Sarah will undoubtedly die,but at least she'll be at home with her family.What a great victory!!!

So the hospital is backing down so Sarah can come home.

I not sure it's as simple as that. A medical guardian has been assigned. If the guardian has quit the duty, that doesn't mean that the underlying reasons for the guardianship don't still exist. In fact, it might require permission of the court to withdraw. Do you have a source?

The Ohio supreme court has done nothing yet, so the hospital had no particular reason to do anything.

Ah, the source, Maurice.

Note completely meaningless wording:

The 1851 Center for Constitutional Law today accepted the Resignation as Limited Guardian of a state official attempting to, on behalf of the State and Akron Children’s Hospital, force chemotherapy on ten-year-old Sarah Hershberger.

Maurice, of course, is in no position to "accept" anything, as he just filed an amicus brief.

@Narad,CBS news,apparently MS.Schimer has asked the court for permission to relinquish her duties since she can't seem to perform them.Hard when the person you're supposed to be making decisions for isn't around! I'm sure that the Hershberger's think that they can come back and everything will go back to the way it was.Again I say they have a long & hard road ahead of them.Sarah unfortunately will begin to pay the price for their choices!

APNewsBreak: Guardian gives up attempt to force Amish girl in Ohio to resume chemotherapy

OK, this is better.

Welcome to 21 O.R.C. 2111.02.

Where does Maurice get the idea that Schimer is a "state official," anyway?

One thing that seems extremely likely is that it's not going to be Lohn sitting in for Dunn this time.

Probate docket. Maurice popped in on December 3rd, not in late November as claimed. This strikes me as a serious problem with respect to the amicus.

Think Raw Milk Guy will let them get back to their blissful lives? Bet he's already trying to talk them into a book deal. Idiots!!

Think Raw Milk Guy will let them get back to their blissful lives?

Maurice at least seems to have had the sense, since, you know, it was really their judgment, to cover his ass with respect to the appeals court just in time. That last item is an extension to December 23 to brief on... an appellate do-over?

There doesn't seem to be any reason for Dunn to allow Schimer to resign, but perhaps she doesn't need any in Ohio. Sarah nonetheless would then seem to be a ward of the probate court rather than Schimer. So, what's Dunn going to do? Ignore the fact that the Ninth District has twice told his predecessor to get his sh*t together on this one and just tell everyone to drive safely and enjoy the holiday?

My money's on an ex parte appointment of an interim guardian, probably the previous guardian ad litem,* and... we're back to the same court that sided with Schimer twice before? Is the expectation that she's going to appear and say that she's changed her mind about the merits, or something?

* One doesn't hear much from Sarah's attorney, now does one?

Sarah's grandfather did not beat cancer. He refused further treatment and when we last heard him during a telephone interview ~ 4 weeks ago, his voice was raspy and he was gasping for breath. Am I a bad person because I hope the old b@st@rd dies a painful death?

According to "raw milk guy" part of Sarah's quack treatments is Vitamin B-17 (laetrile) and "raw milk guy" has a child diagnosed with autism. "Raw milk guy" a.k.a. Mr. Augie a.k.a. Michael Augenstein is an autism researcher who believes in health freedom (vaccine choice).

http://journal.livingfood.us/2011/10/09/new-study-vaccinated-children-h…

Bob G and Nick,
Interesting tales, thanks. I never did the iodinations myself; I was too junior a member of staff back then, though I watched on occasion. This was a clinical biochemistry lab, attached to a research lab, using home-made RIA methods for measuring various peptide hormones. Those that did do iodinations always had a small but measurable peak when their thyroids were scanned, which they were told was nothing to worry about, but which I have always wondered about. The next RIA lab I worked in only used bought-in kits, so we didn't no iodinations, thankfully.

Is RIA in use any more or have other types of immunoassay completely replaced it?

@Krebiozen #121

For small scale research labs, the ELISA has largely replaced the RIA as the immunoassay of choice (except for experiments where Western blots are more appropriate, and even there chemiluminescent detection has supplanted 125I-based detection).

For high-throughput applications such as biomarker searches) there are are several multiplex-capable machines in various physical formats (such as bead-based) or detection methods (such as fluorescence).

Clinical labs have some other options, and big ones use automation: some of those machines may use other exotic detection methods such electrochemiluminescence detection.

Thanks Nick, it must be about 20 years since I last did any RIA. It's all been ELISA since then. I still have an ancient but working Geiger counter that was used to monitor benches, sinks etc.. I salvaged it when it was being thrown out when we finally decommissioned the RIA lab.

It's fun to occasionally scare people by pointing it at a smoke detector, and will no doubt come in useful in the event of an apocalypse. I was going to take it on an official tour of the London Olympics site before the games opened, after it was revealed that small nuclear reactor had been operating there, just to see if there was any detectable residual radiation, but thought better of it.

@Kevin Hill : I too am interested in more information on the case of Justina Pelletier. Supposedly there was to be another court date on Dec. 5, but I can't find any information about it. There was a gag order by the court, I think, so maybe that's why.

I would be interested to hear more about mitochondrial disease, its diagnosis, how likely it is for it to be mistaken for psychiatric illness, etc. Surely it's unlikely that a place like Boston Children's would just declare a teenager to have somatoform disorder and take her away from her parents for months on a whim?

The comments on the AP-Yahoo news article about this are heartbreaking. 1) so many uneducated people, and 2) so many people who put parental rights above all else. My mother emailed me the link to ask what I thought and essentially said she agreed with Sarah's parents and would have done the same. Thanks, Ma. http://news.yahoo.com/ohio-amish-girl-won-39-t-forced-renew-233150234.h…

Surely it’s unlikely that a place like Boston Children’s would just declare a teenager to have somatoform disorder and take her away from her parents for months on a whim?

That was done by the Massachusetts Department of Children and Families.

Am I a bad person because I hope the old b@st@rd dies a painful death?

No.

As AOP notes in #125, the hospital is going to drop its claim to guardianship (http://www.ohioconstitution.org/2013/12/06/victory-for-parental-rights-…) and so this girl gets to come back to the US. Why would they drop their claim? Please tell me it wasn't pressure from all those rabid commenters.

@Chris - unfortunately, the Hospital probably weighed the PR hit they had taken & would continue to take.....and made the economic decision to drop the suit.

If and when the girl dies, the Hospital will be able to say "see, I told you so," but won't bear the responsibility....which sucks.

This is what the cranks wanted.....

@Chris-Did you ever think that Maria Schmir might be dropping it because she knows this little girl has limited time left?Why make the family continue to hide when all you are doing is causing more stress for Sarah.Let her be with her family as long as it is possible.The people involved are thinking they are doing a great thing,when in reality they are forgetting it's about the child.Not about making a name for themselves.The family will suffer greatly in the end.And maybe those patting themselves on the back may actually feel a little remorse for their involvement in keeping her from the chance of getting well! I just hope that she doesn't suffer a horrible death!She will stay in my prayers!

the hospital is going to drop its claim to guardianship

The hospital has no such claim; they acted as an interested party and are now out of the picture. Sarah legally is a ward. The probate court remains bound by Ohio Rev. Code § 2111.50(C), i.e., applying the "best interests" test.

The parents' loss of the ability to direct Sarah's medical treatment was based on their failure to act in her best interests. Not only has nothing changed, a full description of what they've been subjecting her to instead is very likely to strengthen that finding.

Again, this turns on what happens in Ohio when a guardian resigns. In some states, this requires leave of the court. Does anyone really suspect that Schimer is going to testify that she's changed her mind about the best interests of the minor?

In any event, this should be quite a bit more clear in a day's time. Keep in mind that there's a reason that Maurice occupies his current station in life, viz., random Teabag litigator churning out amicus briefs that break every rule of how not to waste a court's time.

^ I blame the cat on my right arm.

Aha. Move to subsection (B)(2). Schimer has to be released. Under subsection (F), nothing changes; the court retains all the powers that it has been ordered to assume by the Ninth District.

@Narad,You might find this interesting,taken from "Raw Milk Guys" Facebook" A Foundations for Health Education representative who is Amish called me this morning to say Ms. Schimer returned his phone call with her attorneys"Funny I didn't think Amish made phone calls,especially on Sunday!Totally against their rules!

Funny I didn’t think Amish made phone calls,especially on Sunday!Totally against their rules!

Maybe he isn't fully Amish, just Amishish.

A Foundations for Health Education representative who is Amish called me this morning....

Funny, I didn't think the Amish engaged themselves as "representatives" for "private non-profit professional associations." Whatever; Schimer and her attorneys aren't making conference calls to random nonparty Amish "representatives" of nonparties if they have a grain of sense.

The great part of this announcement, however, is that "Mr. Augie" reports that he was in the shower and couldn't take the call. Gee, thanks. "I have to call him back after he buggies home from church. I will be getting the details about 2 pm-- I am sensing this is quite positive-- I can hardly wait for all the details." This was posted at 9:56 a.m. CST.

Oh, wait, he secreted the response as I was typing:

Mr. Miller called me after he buggied home. One thing he let Ms Schimer and the attorneys know in the 4-way phone call: Repent of your evil ways right now or you should have your necks in a noose tied to a large stone and be thrown in the deepest ocean. When he told me that his horse whinnied loud into the phone, as if in agreement. Schimer said "I am out of it". Mr Miller was told not to ever call back and harrass them any more. This phone call occurred 4 pm Friday--shorlty after the resignation of Ms Schiimer was just hitting national press and websites. Joni Abbott it is almost showtime again!

"Not to ever call back"? You just said that they were returning a call, moron.

I suppose that this incoherent report is also something of a letdown after the buildup:

I will be getting the details about 2 pm-- I am sensing this is quite positive-- I can hardly wait for all the details.

Anyone out there ever hear of a drug called Ibrutinib?Found an article on the web sounds positive if it is true.Supposed to treat Leukemia & Lymphoma with little to no side effects .Any feedback would be appreciated!!

@Angel: Ibrutinib is currently in clinical trials for different kinds of non-Hodgkins lymphomas (and probably leukemias) - just a few weeks ago it was approved for Mantle Cell nhl. Check clinical trials for Ibrutinib. As for side effects, it's really too early to tell. One needs to confer with an oncologist for more information as to the appropriateness of Ibrutinib for this child.

Mr. Miller called me after he buggied home
his horse whinnied loud into the phone

Wait, what, is the horse in the kitchen now? Or is Miller calling on his cellphone from the stable? But wait, this Miller -- local representative of the Augenstein family business -- is buggying everywhere (as we are reminded by the appearance of the word every sentence or two), so he lives a quaint, bucolic, modern-ways-rejecting lifestyle. OK.

Does the "Foundations for Health Education" have any activities other than issuing press releases to create the impression that Augenstein -- under one or other of his pseudonyms -- has some standing to represent Sarah Hershberger &c, and soliciting donations purportedly on her behalf? I couldn't off-hand see any evidence that it existed prior to October.

Angel @138,

I’ve heard of it - from what someone else told me very early in the year it is (or was) under clinical trials . (It’s status may have changed since then.)

Does the “Foundations for Health Education” have any activities other than issuing press releases to create the impression that Augenstein — under one or other of his pseudonyms — has some standing to represent Sarah Hershberger &c, and soliciting donations purportedly on her behalf?

It solicits donations on its own behalf. The name was registered in August, and it came into existence on November 5 (substitute 2243757 after "CHARTER_NUM:").

^ (Awesome handwriting, brah. [PDF])

The name was registered in August, and it came into existence on November 5
Ta. And genuine non-profit LLC status! I am impressed!

Angel @#138:

Anyone out there ever hear of a drug called Ibrutinib? … Supposed to treat Leukemia & Lymphoma with little to no side effects

I woukld suspect any web posting, from an unidentified source, that announces any Miracle Breakthrough for multiple, barely-related diseases. This one is no exception. Let's quickly check it out:
A little bit of googling finds, among other things, a WSJ version of the press release, and a wikipedia article. (If you need any further info, there's some real information available, too, as well as the ever-present sites that want to sell you some of this Miracle Potion o' the week.)
The press release says that Ibrutinib is a second-line treatment that shows enough promise to get accelerated approval for a specific rare lymphoma, called Mantle Cell Lymphoma (MCL). It's only for use when other treatments are unavailing. Nothing is said about any form of leukemia, or any other form of lymphoma. There are enough side effects that a bunch of patients in the single (!), one-arm (!) trial dropped out.
Wikipedia goes into detail about MCL, the specific lymphoma in question.

And genuine non-profit LLC status! I am impressed!

That bit is up to the IRS, not the the say-so of some overt fraud* with a No. 1 pencil and the State of Michigan. So far, they're not recognized as such.

* No, cartoonish insults of the "repent of your evil ways right now or you should have your necks in a noose tied to a large stone and be thrown in the deepest ocean" variety are not particularly authentic in tone. For that matter, neither is accepting unsolicited charity.

"Victory for Parental Rights: State Agrees to End Stand-Off with Amish Family over Forced Health Care"

http://www.ohioconstitution.org/2013/12/06/victory-for-parental-rights-…

Thank you! I live in the district, I do statistical/analytical work for a living and your data are questionable. I wouldn't choose this path but I hope the girl does well.

When the MDs want to force my kids on Ritalin/SSRs or whatever the trend is at the time, or any another medication with an incomplete pathological model is in the future, I will being telling them "no thank you" and will have case law behind me.

I will being telling them “no thank you” and will have case law behind me.

Um, Jeff, even assuming that Maurice's grandstanding actually pans out the way that he pretends it already has, the case law will be against you.

cartoonish insults of the “repent of your evil ways right now or you should have your necks in a noose tied to a large stone and be thrown in the deepest ocean” variety are not particularly authentic in tone

Maybe you already knew this, but I'm guessing that's a paraphrasing of this biblical quote: "But whoso shall offend one of these little ones which believe in me, it were better for him that a millstone were hanged about his neck, and that he were drowned in the depth of the sea." (Matthew 18:6)

Maybe you already knew this, but I’m guessing that’s a paraphrasing of this biblical quote

No, that Gospel item didn't spring to mind (nor have I yet indulged Raw Milk Guy's biblical pronouncements; his background is apparently nontrinitarian). But I'm thus even more inclined to believe that he pulled that one out of his money-grubbing ass.

Thanks Bill,guess I'm just grasping at straws for Sarah.Once all is said and done with all the media and publicity and her parents have come to their senses,I'm sure they will be trying to find some real help for their daughter1

That bit is up to the IRS, not the the say-so of some overt fraud* with a No. 1 pencil and the State of Michigan. So far, they’re not recognized as such.

There did seem a last-minute-afterthought quality to the application for non-profit status, coming after so many months of asserting that status when asking for money.

However, I cannot bring myself to question the word of an ex-car dealer. Especially one who has established his green new-age credentials beyond all doubt by posing against a background of cauliflowers for his website photographs.

However, I cannot bring myself to question the word of an ex-car dealer.

Still nontrinitarian. Also defies credulity in terms of being behind the times on the James ossuary (also denies the Virgin Birth in that one).

Seriously, if you were Amish, would you want this guy (if he ever does show up with a check), who has already enriched himself in the name of your children, spurns your beliefs, and as a general way of going about in the world, creates deceptions under multiple names with which to glorify himself, anywhere around other than on the wrong side of a rake?

@narad,

I had realized that after posting. Welcome to the technocracy!

The Pensions are good just don't disagree with the leader, you will end up in the Gulags.

Btw, Are Canadian drugs still dangerous?

You've got to be kidding me. The Swartzentrubers are unitarians?

@Narad,

That is funny.

^ Phew, no, some of the news stories got it wrong. There have been some "Christ-only" outcroppings, but in the Gingerich et al. case, the signage was claimed to represent a talismanic paganizing of the Trinity.

@narad,

I had realized that after posting. Welcome to the technocracy!

The Pensions are good just don’t disagree with the leader, you will end up in the Gulags.

Have you recently suffered a head injury, or did you just pop in as a representative of the Maurice fan club?

Still nontrinitarian. Also defies credulity in terms of being behind the times on the James ossuary (also denies the Virgin Birth in that one).

I had forgotten that part of the story. Among his other degrees, Augenstein boasts a degree in Advanced Bibolatry or Exegetics 301 or something of that order.

Among his other degrees, Augenstein boasts a degree in Advanced Bibolatry or Exegetics 301 or something of that order.

Should I not be surprised that an offhand Google search for "Mr. Augie" and "breast milk" yields as the first result his (predictably moribund) Twitter identity as "Vaxinex"?

It is somewhat disturbing to see how much of that Twitter conversation consists of Vaxinex, Mr Augie and David Mitchell all agreeing with one another.

His other superhero/rapper name is even better, as he added a flourish. Meet... FluorideX.

And the sad update. Sarah is probably doomed.

http://scienceblogs.com/insolence/2013/12/09/i-fear-that-sarah-hershber…

Mr. Augie is returning HTML 403s for some reason.

Interesting enough even though ACH is dropping their fight to get Sarah to get chemo RMG is still excepting donations!Up to $20415.00 ,that's $4083.00 for RMG.People can be so gullible!