I didn’t know if I’d get a post out today, given that Monday night a power surge fried my cable modem, necessitating a new setup of my wifi network and that yesterday was my OR day that ran late. However, this story caught my attention and can be dealt with fairly expeditiously. Regular readers know that, among several other cancer-related topics, I frequently write about two types of stories about cancer. The first is the deconstruction of alternative cancer cure testimonials to show why these testimonials almost never provide convincing (or even strongly suggestive) evidence that the alternative medicine used cured the cancer or is responsible for the patient doing well. The second cancer-related topic involves parents who reject conventional treatment for their child’s cancer, which is almost always treatable with a high probability of long term remission or cure, in favor of alternative medicine, thus endangering their child’s life with quackery. There have been several of the latter stories throughout the last nearly 15 years, so many that I can’t remember them all, but some names should be familiar: Abraham Cherrix, Noah McAdams, Cassandra Callender, Carissa Gleason, Sarah Hershberger, and Jessica Ainscough. These cases almost always end up in court, where child welfare workers and medical staff, because calling child protective services is the last resort when parents are endangering their children this way with medical neglect. Inevitably, these cases get ugly, with parents claiming parental rights and medical freedom versus an overweaning state seeking to crush those rights and freedoms, and parents have the advantage. They can say anything they want, while physicians, other medical personnel, and hospital officials are constrained by patient privacy laws. Sometimes, parents even run away with their child to avoid court-ordered treatment. They’re almost always found. Sadly, here’s another one, the case of Kylee Dixon, an Oregon girl with a rare liver cancer whose mother rejected chemotherapy in favor of cannabidiol (CBD) oil and, ultimately, fled to Las Vegas with her:
An Oregon court is ordering that a 13-year-old girl with a rare liver cancer have surgery and receive other medical treatment despite the objections of her mother.
The battle over Kylee Dixon’s treatment began after her mother, Christina Dixon, halted a doctor-prescribed regimen to instead pursue alternative medicine such as CBD oil and vitamins, NBC affiliate KGW8 in Portland reported.
Dixon has said that after Kylee went through six months of chemotherapy, she could no longer watch her daughter suffer.
Before I delve into this particular case itself, let’s look at a video that Kylee Dixon recorded and posted to YouTube in April:
irst off, there’s a reason that it’s incredibly hard for authorities to force parents to do the right thing by their child and get them the treatment required for their child’s cancer. The parents are almost always incredibly appealing, and, if the child is old enough to make a statement like this, as Kylee Dixon is, the emotional draw is so powerful that many people find it hard to resist and make a more reason-based decision. Judges know that, if they order such children like Kylee Dixon to receive treatment against her parents’ (and her) will, it will almost always be incredibly unpopular. Videos like this one show you the reason.
I also understand that chemotherapy is hard. It’s hard for the child to endure, not understanding (or not understanding fully) the reason why suffering through its side effects is necessary, and it’s incredibly painful for parents to watch their child suffer the side effects of chemotherapy. Not infrequently, an element of guilt enters the picture. After all, it is the parents who are giving the doctors permission to treat their child, making them complicit in causing their children to suffer. Even though adults should be able to understand that this is short term pain for long term gain, the emotional bond between a parent and child is such that, even knowing that, parents often run into problems. If the parents happen to be prone to belief in “natural” or “alternative” healing, watching their child endure the side effects of chemotherapy can be enough to push them away from conventional science-based medicine and into the arms of quacks.
I was particularly saddened at how Christina Dixon turned her child against doctors. There’s a point where Kylee talks about how her mother took her off of chemotherapy and put her on seven different “natural” treatments to “heal” her. She got better within three months. Of course, if you take someone off of chemotherapy, of course the side effects will go away! The problem is that the cancer is no longer being treated. As a result, that improvement is often transient, lasting only until the cancer starts progressing again. In any event, in the video, Kylee says that the doctors “didn’t like” that her mom had gotten her better with natural treatments and reported her mom to Child Protective Services (CPS). The saddest part, to me, was where she asked who was fighting for her, saying that no one is fighting for her besides her mom, who can’t afford an attorney and had to quit her business to take care of her. In fact, CPS and her doctors were (and are) fighting for her. They’re fighting to save her life, even going so far as to take the unpopular, painful, and traumatic step of terminating her mother’s parental rights to make medical decisions and putting Kylee into foster care.
Here’s Kylee Dixon’s GoFundMe page. I realize that the version of events that families place on GoFundMe is often a very biased version that usually leaves out important information, but it’s a good starting point. It’s long and rambling, with a lot of references to God and Bible verses, to the point where it’s easy to lose the core of the narrative. So let’s look at the KGW News report by investigative reporter Kyle Iboshi:
One thing irritated me right off the bat, namely Iboshi referring to parents “skeptical” of conventional medicine using the term “medical kidnapping.” No, those who reject (or mostly reject, as in saying that they’re fine with conventional medicine for trauma and broken bones but not much else) tend to use that term. That’s more than a quibble too, because skepticism implies doubt based on evidence and reason, not just outright rejection. In any case, we learn that Christina Dixon was arrested and Kylee taken into CPS custody in June, after they were found in a hotel and casino in Las Vegas.
In the story, we see an all too common narrative from Ms. Dixon, that she took over her child’s care and saved her from those evil doctors wanting to push poison into her. The story began in February 2018, when Kylee was rushed to the emergency room due to severe abdominal pain. Workup revealed a liver mass that had ruptured and bled, necessitating transfusion and transfer to Oregon Health & Science University (OHSU) Hospital, where Kylee underwent chemotherapy for a rare liver cancer, an undifferentiated embryonal sarcoma of the liver. (As an aside, it drives me crazy that almost none of the news reports mention the kind of liver cancer, forcing me to do searches leading to a webpage like the one I just linked to in order to find out.) Reading the GoFundMe account, I learned that apparently there was a diagnostic question and that Ms. Dixon was initially told that this was a benign tumor, but later, presumably after more testing or sending the tumor specimen out for another opinion, the diagnosis of malignancy was made. On her GoFundMe page, Ms. Dixon mentioned how this was after the surgeon had said that he was “110% sure that my baby girl didn’t have cancer”:
So when he came to deliver me the news it was him alone, ( no meeting) he didn’t bother asking Kylee and I if we wanted someone else present for support. He just wakes me up and he states: I wanted to let you know that i was wrong on Kylee’s mass that she has in her liver, the results came back, I asked what do you mean? He then stated: Kylee’s tumor is malignant, it’s a cancer tumor and a very rare aggressive tumor and a fast growing one, I literally went into mental shock!!!
Word to fellow surgeons. Never say this sort of thing to a patient or patient’s parent. I know that you want to project confidence and reassurance, but find another way. If you’re wrong, the result could be a catastrophic loss of faith in you and the hospital, particularly in a parent predisposed to believe things like this:
Being a single parent with full and sole custody, raising both Kylee and her sister Jasmyne, on my own and on a sole income, with no child supprt and have lost my business the day Kylee got diagnosed as I NEVER left herside, I didn’t go home for 6 months straight, I only left a few times the entire 6 months there, just to go to a store a few minutes away from the hospital as I needed a break desperately, I had witnessed way too much and seen what happened with the other kids up in that hospital in the cancer unit, when parents were gone for hours and days at a time and they would leave their ill child there all alone at the hands of the Doctors that are now controlled and and regulated by FDA’s new contract to reduce population! ( I will go into more details on this when I can make copies of what I have and show the records and recordings of the proof I have).
This is a parent whose confidence would have been difficult to win in the best circumstances.
So after six months, Ms. Dixon refused further chemotherapy, followed by surgery to remove the tumor, and sought “alternative treatments.” These treatments included vitamins, herbs, CBD oil, and naturopathic treatments. At this point, I’m a bit confused. One thing that Iboshi does a little more than halfway through the 8:40 minute segment is to call his news director and say that the mom “isn’t just letting her child die”; she just disagrees with the doctors. Ugh. That was painful. No, Mr. Iboshi. If you treat your child with quackery, unproven treatments, you are sitting back and letting your child die, no matter how much you might believe otherwise. I do like how Janet Steverson at the Lewis & Clark Law School says, “I always find it interesting everybody’s like ‘I have an absolute right.’ No you don’t, not at all.” That’s good, as is Steverson’s explaining that if a parent decides to treat a serious illness with a spoonful of sugar every day that’s the same thing as no treatment, and the courts will rule that way. Better still is an interview with bioethicist Art Caplan, who notes that doctors can go to court and win in cases like that of Kylee Dixon because “parents are not allowed to sacrifice their child for unusual or let’s call them outside-the-mainstream beliefs.” (Sadly, although this is true in principle, in practice all too often children are sacrificed on the altar of religions that preach prayer over medicine.)
I will admit to annoyance that Iboshi decided to finish his report in the most emotionally manipulative way I can imagine, showing the conclusion of Kylee Dixon’s video, in which she tearfully pleads for her mother and not to have to undergo surgery. As powerful as that is, emotionally speaking, it hopelessly taints the report as being too sympathetic to exactly the view that Caplan dismissed, the idea that parental rights are absolute and that parents do have the right to sacrifice their children on the altar of “outside-the-mainstream” beliefs. Worse, because of its lack of discussion of the cancer, the treatments, what the expected outcome of conventional treatments are, and the lack of evidence for CBD oil as a cancer treatment (outside of a brief statement), Iboshi left out valuable context. So what is Kylee’s situation? In this interview with Iboshi, all Ms. Dixon claims is that the tumor has not spread or gotten bigger. Elsewhere, namely at the end of her GoFundMe page, I find a claim that the tumor has shrunk to 10%-15% of its original size on her treatments alone. What is the truth? Who knows? Doctors can’t confirm or refute anything that Ms. Dixon says, given that HIPAA privacy laws don’t let them say anything without the permission of the patient or guardian.
But what about the specific kind of tumor Kylee Dixon has, undifferentiated embryonal sarcoma of the liver (UESL)? It’s a rare tumor that is most common in children 6-10 years of age. Like Kylee’s case, it’s often initially misdiagnosed as other types of hepatic tumors. Hemorrhage is a common presenting sign, and these tumors are often large at diagnosis. Indeed, Kylee needed surgery, followed by embolization to block the blood vessels feeding her tumor, in order to stop the bleeding. Necrosis and cystic degeneration are also common, which could well be why Kylee’s tumor has, if you believe the mother’s GoFundMe page, decreased in size. That doesn’t mean that CBD oil worked. The definitive treatment of such tumors is surgical resection, followed by chemotherapy. So why were OHSU pediatric oncologists giving Kylee chemotherapy before surgery? A recent review notes:
In the past, prognosis of UESL had been poor. In 1990, Leuschner et al27 reported a low survival rate (37%) of patients with UESL. At that time, management of UESL relied primarily on surgical resection. However, the prognosis has slowly improved as these patients are managed with multimodal treatment, including radiation therapy and chemotherapy.6
Neoadjuvant chemotherapy is often helpful in unresectable cases. In addition, postoperative chemotherapy and radiation therapy are often reasonable options, particularly in surgical cases with positive margins. Bisogno et al6 reported the success of an alkylating-based regimen with or without anthracyclines in treating UESL. May et al28 recently reported the successful outcome of patients with UESL who received a vincristine, actinomycin-D, and cyclophosphamide regimen, which was initially developed for patients with intermediate-risk rhabdomyosarcoma. Orthotopic liver transplantation has been reported as a successful management for patients with recurrent and refractory disease.29 Furthermore, 18-fluorodeoxyglucose positron emission tomography has been useful in evaluating the response after chemotherapy.29
Studies6,28–30 have shown improved survival rates, ranging from 70% to 100%, in patients who were treated with multimodal therapy. The recurrence rate in UESL is higher during the first 2 years after surgery, and the risk is higher with positive resection margins and cases with spontaneous or iatrogenic rupture of the hepatic lesion.6
So basically, Kylee has a very good chance of long term survival if she and her mother accept the recommended chemotherapy and surgery. True, she does have a lower chance of survival than the average UESL patient because her initial presentation was with spontaneous rupture of her liver tumor, but we know what her long term chance of survival is if she continues on her mother’s treatments: Basically zero. The surgery recommended appears to be a partial hepatectomy, which Ms. Dixon describes as “removing half her liver”:
Ms. Dixon complains that DHS and the DA “refused to allow for the surgery to take place at a hospital that has a transplant unit attached to it like they do in Seattle and at Stanford’s,” but that’s not strictly necessary, because postop liver failure doesn’t usually develop immediately, and there would be time to transfer Kylee to a transplant center if that were to occur. Moreover, the chances of postoperative liver failure after removing only half the liver would not be high anyway in an otherwise healthy patient.
Cases like this are horrific. One can understand Ms. Dixon’s position and understand that she only wants the best for Kylee, even though she is wrong to refuse conventional treatment for her daughter and is, in fact, endangering her daughter’s life by delaying conventional treatment so many months. Indeed, like many of these cases where parents refuse conventional therapy, the only reason it’s made it this far is because Kylee is apparently fortunate enough to have a cancer that is not progressing as rapidly as UESLs normally progress. If that were not the case, Kylee would be dead already. In general, nearly all of these cases that I’ve reviewed tend to involve less aggressive versions than usual of the cancer in question (or an initial excellent response to chemotherapy that makes the parents question why all the followup chemotherapy in the standard of care is necessary to decrease the risk of recurrence), because more indolent than average disease allows the parents to continue to believe that whatever quackery they are using to treat their child is working in a way that rapid progression of cancer off of treatment does not.
I also feel for the social workers, foster parents, and medical staff, who have an incredibly difficult and painful task, given that Kylee has been completely convinced by her mother that CBD oil is curing her and surgery is unnecessary, even though the evidence for CBD oil versus cancer is weak to nonexistent. (Come to think of it, I should update my past discussion of this, either here or at my not-so-secret other blog.) As a surgeon, I can imagine how uncomfortable it would be, given our usual ethical considerations, to perform necessary elective (as opposed to emergency) surgery on an unwilling patient. Even worse, if Kylee still dies after undergoing court-mandated conventional therapy (a possibility, given that, unlike alternative medicine, no science-based oncologist promises a cure, and all cancer treatments have failure rates), you just know that the alternative cancer crankosphere will trumpet the lie that oncologists and surgeons “murdered” Kylee, while if she survives her survival will be attributed to the CBD oil and other quackery, not to the conventional multimodality treatment of her cancer.
In the end, though, contrary to what so many people believe, parental rights are not absolute. The child is not the parents’ property. She is not a body appendage. She is a separate being with the right not to be medically neglected. Because the child is too young to make such momentous medical decisions on her own, she must trust her parents to do the right thing, and, unfortunately, when the parents fail to do the right thing sometimes the state has no choice but to step in to save the child’s life, even if it is against the child’s will.