Here we go again.
Over the last month or so, I’ve been intermittently writing about a very sad case, a case that reminds me of too many cases that have come before, such as Abraham Cherrix, Kate Wernecke, Daniel Hauser, and Jacob Stieler. All of these are stories of children who were diagnosed with highly curable cancers who refused chemotherapy and were supported in that decision by their parents. Generally pediatric cancers have an 80-90% five year survival, and recurrences after five years are rare; given that children can be expected to live many decades, the consequences of refusing life-saving chemotherapy are particularly dire. The latest of these cases that I’ve been writing about is the case of a 10-year-old Amish girl from Medina County in Ohio named Sarah Hershberger, who developed lymphoblastic lymphoma, underwent chemotherapy for a few weeks, and then decided she didn’t want it anymore. Her parents also didn’t want it anymore. This led to a court case in which the first decision was that the Hershbergers’ decision to refuse chemotherapy should be upheld. This decision was reversed on appeal, which caused the alternative medicine world to lose its mind in rage, because, from my perspective, they seem to think that parental rights are absolute.
A couple of weeks after that, predictably, there was a report that the Hershbergers had fled the country to avoid the “fascist” state “forcing” chemotherapy on their daughter. This particular report was very odd in that I have as yet been unable to find any corroborating evidence that the Hershberger family has, in fact, actually fled the country. You’d think that if her family had actually fled the country that the mainstream press would have picked up on it, but I haven’t been able to find news reports in mainstream news outlets saying that Sarah Hershberger has actually fled. I searched a whole bunch of mainstream news sites, including the local news site for the Akron Beacon-Journal, and I found no stories of the Hershbergers fleeing the country last week, only reprints of the original story claiming that she fled and reports of a fundraiser to let her come back into the country. My guess is that she and her family are probably still in Medina County, but who knows? I don’t, but I make educated guesses. Given how insular the Amish are, if the community decided to hide the Hershbergers, the authorities would be unlikely to find them without doing door-to-door sweeps and searches of the surrounding farmlands, and even then they might not find her. But, again, who knows? It is, however, mighty odd that as of this writing there have been no corroborating stories in the mainstream press.
Be that as it may, over the weekend, I became aware of a new development in the Hershberger saga. Thanks to some believers in alternative cancer cures, I learned that Isaac Keim, Sarah Hershberger’s grandfather, gave an interview to Chris Wark of Chris Beat Cancer fame. (Chris did beat cancer, but it was the surgery, not his quackery, that cured him.) In any case, here is the telephone interview, introduced by Mr. Wark, who smugly brags about this being “exclusive” and getting a cell phone into Amish country. That latter accomplishment isn’t much, because basically anyone can visit Amish country; the Amish have a lot of stores and roadside stands where they sell their furniture and farm products. One wonders if a non-Amish ally of the Hershbergs showed them Mr. Wark’s website and got Mr. Keim to agree to speak to him. However Mr. Wark managed to score this interview doesn’t matter. What’s in the interview does:
One aspect of this Wark’s introduction to this interview that immediately struck me is how he frames it, stating that only “one side”—namely, the hospital and government’s side—has been reported. He then states that he’s going to let the family tell its side, which he refers to as the “truth.” This is, of course, utter nonsense. The family’s side of the story is no more the “truth” than the government’s or hospital’s side of the story. Everyone describing a story has his or her own biases and experienced the events of the story from his or her own perspective, and it’s clear that the Hershbergers’ experience is lacking critical pieces of information. Be that as it may, the interview with Isaac Keim is enlightening in that he and Chris Wark inadvertently confirm that much of what I wrote in my previous two posts was very likely spot on accurate in describing what probably happened.
We first learn from Mr. Keim that the family first noticed something wrong when they found a lump on Sarah’s neck. So they took her to the doctor, and she ended up being referred to Akron Children’s Hospital. (One notes that the Facebook page for ACH is currently deluged in people like Chris Wark attacking the hospital for trying to save Sarah’s life. Please show ACH some love.) Ultimately she was diagnosed with a T-cell lymphoblastic lymphoma, and a workup revealed tumor in her neck, kidneys, and “in her body,” whatever Mr. Keim means by that, which seems to be elsewhere in her abdomen and chest. The Hershbergers were told that this is an aggressive tumor, but treatable with an 85% five year survival achievable with a 27 month course of chemotherapy. All of this is consistent with what’s been reported and what I’ve been discussing. The Hershberger family was further told that there would be five phases of treatment, which is also consistent with what I’ve discussed.
Although Mr. Keim didn’t mention the phases, I will now. These phases, as one of the pediatric oncologists, Dr. Prasad Bodas, testified, include induction (5 weeks), consolidation (seven weeks), interim maintaince (eight weeks), delayed intensification (six weeks), and maintenance (90 weeks). I’ve explained the concepts of induction, consolidation, and maintenance before; so I won’t go into detail now. However, it is worth repeating that induction chemotherapy (which is what Sarah went through) is not enough. Pediatric oncologists learned the hard way a long time ago, back when effective chemotherapy was first being developed and tested for these pediatric malignancies, that chemotherapy would often appear to eliminate the cancer very quickly but that the cancer would nearly always recur rapidly in a more resistant form. This led to the addition of more chemotherapy in additional stages, and chemotherapy regimens evolved, ultimately to the regimens consisting of three to five stages that we know today. Stopping after the induction phase virtually guarantees that the cancer will return.
That’s exactly what the Hershbergers did, unfortunately. Mr. Keim relates that Sarah underwent the first phase, which lasted 4-5 weeks and resulted in the lump on her neck nearly disappearing within a week. She also tolerated this first phase very well. It was at this point that the Hershbergers started to wonder why more chemotherapy was needed. Now, here the story gets dicey. According to Mr. Keim, the doctors wanted to start the second phase but didn’t have the parents’ permission. Yet, according to him they just went ahead with the chemotherapy anyway. Clearly, there had to have been a breakdown in communication here, because, having worked in multiple hospitals over the years, I know that, if there’s one thing that major academic center hospitals are very, very compulsive about, it’s getting informed consent for almost everything, particularly now. Indeed, most such hospitals take it to an extreme, getting formal informed consent for tiny procedures like a punch biopsy of the skin. It stretches belief that ACH would subject a girl to further chemotherapy involving what sounded like intrathecal chemotherapy (chemotherapy injected by lumbar puncture into the central nervous system) requiring general anesthesia to administer and have a visiting nurse come out to administer chemotherapy at home without having had the parents’ permission. At the very least, no anesthesiologist would put a child to sleep without the parents first signing permission, and no interventional radiologist would put a catheter into the spinal canal without permission. If it is really true that the hospital did all this without their consent, the parents would have a hell of a lawsuit that they could file, and I would urge them to file it.
In any case, from Mr. Keim’s account, it sounds as though the second phase is what caused Sarah to become really ill. He described her as feeling so weak that she wouldn’t get out of bed for a week and wouldn’t eat. At some point a nurse came to give the first of three weekly injections. She apparently was going to leave the remaining two injections at the Hershberger’s house and instructed them to keep them on ice. I found this to be rather odd, not the least of which because this was Amish territory and there was likely no refrigeration. True, the Hershbergers probably have an ice box, but if it’s so critical to keep a drug refrigerated, I doubt that a hospital would leave it in an Amish household where there might or might not be adequate ice to keep it cold enough.
Whatever the case, if Mr. Keim’s account is accurate, that nurse then did something that arguably set the whole family off. She told the family to keep the syringes away from any children, which is certainly reasonable advice given that these were undoubtedly powerful chemotherapeutic agents, although I would wonder why the nurse would leave the drugs in a household where syringes of powerful chemotherapeutics would likely be placed next to food sitting in the icebox where children might be able to get at them. That wasn’t what set the family off, though. What set the family off was when the nurse also told the family that the chemotherapy in the syringes could cause cancer.
That’s when all hell broke loose. That’s when the Hershbergers decided to stop the chemotherapy.
At this point, Mr. Keim said that the Hershbergers were never told that cancer was a risk from chemotherapy, leading to an exchange with Mr. Wark castigating cancer doctors for not telling patients everything where Mr. Wark claims that most cancer patients aren’t told that chemotherapy can cause cancer. Again, this claim stretches credulity beyond the breaking point. If you’ve ever read the consent forms for chemotherapy regimens, you know that it’s right there in black and white, a statement that the chemotherapy can increase the risk of cancer years down the road. For childhood cancers, the risks are clearly listed as Dr. Bodas testified: infertility, an increased risk of cardiovascular disease, damage to various organs, an increased risk of contracting other cancers, and a “small but appreciable risk” of dying from the treatment itself. Yes, these are significant risks, but lymphoblastic lymphoma will kill without treatment; so these risks are not unreasonable weighed against the rewards. I’d be willing to bet that those risks are listed on the informed consent that the Hershbergers signed when induction therapy was begun, and I’d be doubly willing to bet that the oncologists who discussed chemotherapy with the parents mentioned those standard risks.
At this point, the Hershbergers went to ACH and brought Mr. Keim along to tell the doctors that they had decided to quit chemotherapy and go for “natural” healing. Sarah didn’t want any more, and they were convinced that the chemotherapy was killing her. To say that the session was contentious would be an understatement. The hospital must have been expecting this, because apparently there was a lawyer, what Mr. Keim described as “PR people,” doctors, and nurses. Mr. Keim claimed that he had been diagnosed with cancer a year ago, chosen “natural healing,” and was doing fine, but he didn’t say what kind of cancer or how advanced, making it impossible to comment. Mr. Wark, however, lapped it up, castigating the doctor for apparently telling Mr. Keim to “shut up.” While, if the doctor did indeed say that, it wasn’t the wisest thing in the world, what I think he meant, listening to the interview, was that Keim’s story was irrelevant to the case at hand and that this was not about him. I agree. One thing that disturbed me to learn was that the hospital first referred the case to Medina Job and Family Services in June, but that it refused to file neglect and dependency charges against the Hershbergers. This is confirmed in the first ruling that went in favor of the Hershbergers. All I can say here is that MCJFS completely dropped the ball here. I also agree with the doctor’s characterization of this decision as “child abuse.”
Much of the rest of the interview consists of attacks on ACH and Maria Schimer, the general counsel for the Northeast Ohio Medical University (NEOMED), the medical school with which ACH is affiliated and the person petitioning the court to be Sarah Hershberger’s medical guardian; conspiracy mongering, and unverifiable claims. For example, Wark and Keim claim that Schimer’s only qualification to be Sarah’s medical guardian is that she had been appointed guardian to people who had been on life support for over a year but had no guardians, all so that the hospital could “pull the plug,” characterizing her as a “witch” standing their ready to “pull the plug” by getting Sarah back on chemotherapy. Yes, they not-so-subtly implied that Ms. Schimer wants to kill Sarah. This is pure slander, as a reading of the actual opinion of the Ohio Appeals Court, Ninth Appellate District reveals. Yes, she was appointed ward of the court for people on life support in the 1990s, but she has also served as ward for “several medically compromised, developmentally disabled adolescents, who were unable to speak for themselves and had no family members to speak for them.”
The conspiracy mongering was of the standard variety, in which it was claimed that ACH was paid a million dollars by a medical company to win this case. The claim was bookended by Mr. Keim saying, “I have no proof of this but I have been told by several people” and then, “I don’t know this to be true, but I’ve heard that.” One wonders who those “several people” were, one does. One also wonders why Mr. Keim would repeat something that he himself does not know to be true. Could it be to poison the well? There’s no “could” about it. At the very least, it allowed our friend Mr. Wark to go off on a rant about tyranny and how “they” (whoever “they” are) don’t want parents to make decisions for their children and how “they” don’t want people to have “options” and “they” want to force therapy. No such rant would be complete without that old alt-med cancer trope that “it’s not about a cure, it’s about healing” and how “only the body can heal cancer.”
The unverifiable or very difficult to verify claims fly fast and furious, as well Mr. Keim claims that Sarah was taken to “one of the top cancer centers in the U.S.,” but doesn’t mention what that cancer center was. He claims that all her tests there show that she is free of cancer. He claims that county sheriffs have been out to the house but that they don’t want anything to do with this case unless they’re forced. (I actually believe that one; police generally don’t like the idea of taking children away from their parents.) He claims that an doctor in Cleveland took over her care but doesn’t know who that doctor is. One notes that Mr. Keim’s claims conflict with claims made earlier that Sarah Hershberger is being treated by three doctors and that she was on “experimental” chemotherapy in a clinical trial without her parents having been given informed consent.
Finally, Mr. Keim laments that he contacted several television stations to try to give the family’s side of the story but that they wouldn’t do it unless the Hershbergers appeared on camera, which they would not do because they are Amish. This, too, is hard to believe. No, it’s not hard to believe that television news producers wouldn’t present the family’s side of the story if the Hershbergers wouldn’t appear on camera. What’s hard to believe, given that this story has made international news, is that a newspaper wouldn’t eagerly interview the family if approached or that a radio station wouldn’t eagerly have the Hershbergers phone in, as Chris Wark had Isaac Keim phone in. No, what the Hershbergers likely wanted was an outlet sympathetic to their point of view that wouldn’t challenge them, and Isaac Keim got it in Chris Wark.
Here’s the final irony. At about 29:00 in the interview, Mr. Wark basically admits that my interpretation of events could well be correct. In other words, he admits that chemotherapy could well be what rendered Sarah Hershberger cancer-free, if cancer-free she is at the moment:
I do want to be fair about this. Leukemias and lymphomas and testicular cancers respond better to chemotherapy than most cancers do, and it is entirely possible that those few treatments she did got rid of her cancer…Even if that’s the case, if that is what got rid of her cancer—now typically chemotherapy only gets rid of it for a short time; it’s only a temporary solution; it doesn’t address the root cause of disease—the point is freedom. It’s about the freedom of choice, the freedom that a parent has to make decisions for their child, medical or otherwise…It’s a bigger fight about a parent’s right to choose what’s best for their child, what medical treatment is best for their child versus whether or not chemo is going to help her. And that decision belongs to the parents and belongs to Sarah.
Isn’t that what I’ve been saying all along, that to people like Chris Wark, parental rights trump all else? It doesn’t matter if the child is only 10 and thus too immature to make such a monumental decision. The life of the child apparently doesn’t matter to Wark in the least, at least not in comparison to parental “rights” to choose quackery. He’s perfectly willing to sacrifice Sarah Hershberger on the altar of “health freedom” to the point that he’s willing to help raise money for the Hershbergers to fight for the right to let their daughter die using a Pledgie and a GoFundMe campaign.
In the meantime, Isaac Keim also revealed that the Hershbergers have been subpoenaed to appear in court on November 6. We’ll see what happens.