makayla-sault-v2

One topic that keeps recurring and obligating me to write about it consists of critically analyzing stories of children with cancer whose parents, either on their own or at the behest of their child, stop or refuse chemotherapy or other treatment. It is, sadly, a topic that I’ve been discussing for nearly a decade now, starting first on my not-so-super-secret other blog and continuing both there and here. Indeed, the first post I wrote about this problem was in November 2005, a fact that depressed me when I went back through the archives to find it because so little has changed since that time.

I was painfully reminded of this last week when stories started circulating in the media about the death of Makayla Sault, an Ojibwe girl and member of the New Credit First Nation in Ontario:

The entire community of New Credit is in mourning today, following the news of the passing of 11 year old Makayla Sault.

The child suffered a stroke on Sunday morning and was unable to recover. Friends and family from across the province travelled to New Credit First Nation today to offer condolences, share tears and pay their respects.


Makayla, as you might recall, was an 11 year old aboriginal girl from Canada with lymphoblastic leukemia. She was one of two 11-year-old aboriginal girls last year who refused chemotherapy and have medical stories that are eerily similar. The other girl’s name is unknown (at least to me and most of the public), because of privacy concerns in her legal case, but she is referred to in court documents as “JJ” and is a Haudenosaunee girl from Six Nations of the Grand River First Nation, also in Ontario. I discussed her case extensively back in November and will be discussing her more here. The short version is that, like Makayla, JJ developed lymphoblastic leukemia, underwent a short course of chemotherapy, stopped the chemotherapy, and discovered a cancer quack by the name of Brian Clement, who promised JJ’s mother that he could cure her cancer. As a result, as is often the case in such situations, there was a legal battle, and Ontario Court Justice Gethin Edward ruled that the parents can let their daughter die. Of course, he didn’t put it in those words. Rather, the Justice Edward ruled that “traditional healing” is such an integral part of aboriginal rights that the parents’ “right” to treat their children with “traditional healing” trumps the right of the aboriginal child to live. I know, I know, I’m letting my bias show, but functionally and for all practical purposes, that’s what his ruling means.

When I come across a story like this, in which a child is being medically neglected and allowed to die, as Makayla Sault was and JJ is, I come at it from one unwavering viewpoint: The right of the child to receive proper medical care and thus to live trumps pretty much everything else. Religion doesn’t much matter to me. Nor does race, nationality, or culture, even that of the Amish or indigenous peoples. I am completely unapologetic about this stance, no matter how “intolerant” I’ve been called regarding this case and about other cases in which religion was the motivating factor behind the parents’ refusal to seek science-based treatment for their child. Competent adults with deadly diseases are free to choose to be treated, not to be treated, or to undergo quack treatment, but a child is not competent to make such a decision. Because of that, a child depends upon her parents to choose what is in her best interests.

None of this is to say that wide latitude shouldn’t be given to parents to choose their children’s health care. The state should never step in lightly. There are many gray areas, after all. However, when parental choice so mind-numbingly obviously conflicts with the best interests of the child and will inevitably lead to that child’s unpleasant death, as Makayla’s case so harshly demonstrated and JJ’s case will almost certainly demonstrate by the end of this year, then parental “rights” should cease to matter as well. Again, I make no apologies for this viewpoint, any more than I did when I lamented how a young Amish girl named Sarah Hershberger is similarly being allowed to die of a treatable cancer.

Now, another child who with proper medical treatment had a much better chance of surviving than dying has died because she and her parents chose quackery over effective treatment, and another is heading that way.

A tale of a preventable cancer death

It seems a long time ago, but it has only been a couple of months since I first discussed the case of Makayla Sault in the context of the story of JJ, a First Nations girl with cancer, whose fate was almost certainly sealed by Justice Edward’s ruling. Rather, as did Sault’s parents, JJ’s parents took her to Brian Clement, a Florida quack who isn’t even a physician but somehow has been treating patients with cancer at the Hippocrates Health Institute in West Palm Beach for many years now with his “Life Transformation Program” that includes a veritable cornucopia of quackery. Indeed, former staff of his are suing him for operating “a scam under Florida law” and practicing medicine without a license. Interestingly, approximately a third of Clement’s business appears to come from Canada. Why his quackery is particularly popular among Canadians is a mystery, but it is.

Clement seems to have a thing for treating everything with wheatgrass enemas. Wheatgrass, according to Clement, can increase red blood cell count, decrease blood pressure, cleanse the blood, organs and GI tract of “debris,” stimulate the thyroid gland, “restore alkalinity” to the blood, “detoxify” the blood, fight tumors and neutralize toxins, and many of the usual other things quacks like Clement claim. He even offers the infamous “detox footbath,” plus intravenous vitamin therapy, cranial electrotherapy stimulation, combination infrared waves plus oxygen, acupuncture, colon hydrotherapy (apparently with or without wheatgrass) and lymphatic drainage. There’s even a bit of quackery hilariously called colorpuncture, in which various colors are applied to acupuncture points.

You get the idea. Brian Clement’s clinic has nothing to do with Ongwehowe Onongwatri:yo (indigenous medicines) and everything to do with good, old-fashioned European-American quackery focused mainly on wheatgrass, a raw vegan diet, and “detoxification.”

Makayla Sault, as you might recall, preceded JJ in seeking treatment from Brian Clement. She was diagnosed with acute lymphoblastic leukemia last year and began a course of induction chemotherapy. In May, after eleven weeks of chemotherapy and alarmed at the side effects, she refused further treatment. Her reasons for stopping were explicitly religious, complete with a video in which she explained her reasons for stopping:

Then she reads her jarring words. “I am writing this letter to tell you that this chemo that I am on is killing my body and I cannot take it anymore.”

“I have asked my mom and dad to take me off the treatment because I don’t want to go this way anymore,” she said, describing how chemotherapy left her unable to walk and nauseous, with terrible sores and organ damage.

“I know that what I have can kill me but I don’t want to die in a hospital on chemo, weak and sick,” she said. “I wish that the doctors would listen to me because I live in this body and they don’t.”

And then a vision of Jesus:

In the video, she explains that she is at peace because of her faith. She said Jesus appeared to her in her hospital room, telling her not to be afraid.

He was wearing a robe and prayer shawl, with long straight hair, and was “beautiful,” she said. He showed his hands, with the stigmata marks. Two angels were beside him.

“I asked him ‘Can you heal me?’ and he said ‘You are already healed,'” she said. “He told me ‘Do not be afraid. You are my child.'”

In October, she filmed another video from a boat, saying, “I just want everybody to know that I’m alive and well and that I’m healed.”

The first video is here:

The video of Makayla on a boat is here:

It’s hard not to be moved seeing this video, knowing what happened to Makayla just a week ago. Like all children (and many adults), she is laboring under the delusion that death by cancer is better than suffering through chemotherapy. It’s not.

Both of Makayla’s parents are pastors at an evangelical church; so it is not surprising that she shared their Christian faith. They supported her decision, and although the decision was initially challenged by the Brant Children’s Aid Society (CAS), the CAS backed off and closed the case file because “we have to recognize the traditions and the community of First Nations people,” according to director Andy Koster, speaking last May. Koster also said:

“The more we looked at it we realized that this is a warm, loving family,” said Andy Koster, executive director of the Children’s Aid Society of Brant. “We don’t believe that bringing her into care, taking her away from that family — which is her support — and forcing chemotherapy, is going to be in any way emotionally sound for her, or psychologically or even spiritually.”

Nice job there, Mr. Koster. Letting such a child die of untreated leukemia isn’t emotionally sound for her, either, but that’s what the Brant CAS decided to do. No one said that forcing chemotherapy is a good thing; rather, it’s the lesser of two evils. Another child who very well might have been saved and lived to a ripe old age is dead, her whole life ahead of her having been thrown away pointlessly, because her family relied on quackery instead of effective medicine. Once more, a cancer quack has claimed a very salvageable life.

The saddest thing about this is that this outcome didn’t have to be. All reports indicate that Makayla’s tumor was a treatable variety. In fact, it was the same kind of cancer JJ’s, lymphoblastic leukemia, although it wasn’t as favorable a variety. Pediatric oncologists estimated that Makayla had a 70%-75% chance of surviving five years, because the cancer had the Philadelphia chromosome. Since recurrences after 5 years are almost nonexistent, that’s essentially a cure. So, yes, it’s quite possible that Makayla could have been treated with the very best drugs modern medicine has to throw at lymphoblastic leukemia and died anyway, roughly a one in three to one in four chance. However, by abandoning chemotherapy and choosing Clement’s quackery instead of her best shot at a cure, Makayla and her family reduced her chances of survival from a very good shot to zero shot. To be honest, after the descriptions of how her condition was deteriorating in November when I originally wrote my post about JJ, I’m a little surprised that she lasted a further two whole months.

Now Makayla’s parents have suffered one of the worst losses, if not the worst, a parent can endure. They are, no doubt, suffering intensely, as is Makayla’s entire family and community, over the loss of their beloved child. I do not blame either Makayla or them, at least not nearly as much as I blame Brian Clement for having duped them. Unfortunately, as is often the situation in these cases, the Sault family does not accept that the cancer killed Makayla. As is so frequently the case when a patient dies while treating her cancer with alternative medicine, they’re blaming the chemotherapy. In a statement, they said:

Makayla was on her way to wellness, bravely fighting toward holistic well-being after the harsh side effects that 12 weeks of chemotherapy inflicted on her body.

Chemotherapy did irreversible damage to her heart and major organs. This was the cause of the stroke.

We continue to support Makayla’s choice to leave chemotherapy. At this time we request privacy from the media while we mourn this tragic loss.

Yes, as happens so often in these cases, it’s not the quack’s fault that the child died. It’s the fault of those evil “Western” doctors and their poisonous chemotherapy. Always and forever. Unfortunately, a stroke is a known complication of leukemias due to either cancer-related coagulopathy or complications of treatment. It’s one way that patients with end stage leukemia die. True, one chemotherapy drug that might well have been used in the initial induction chemotherapy that Sault had can cause stroke, but not a delayed stroke several months after the therapy had been discontinued. As I pointed out in the comments of a story about Makayla’s death on Doubtful News and an oncologist has pointed out in an interview, intracranial hemorrhage due to leukemia is a not-uncommon terminal event when the bone marrow is taken over by the cancer and can’t make enough platelets and other blood products. Similarly, an ischemic stroke can occur due to (1) leukostasis, with high white blood cell counts (as can be caused by acute lymphocytic leukemia) causing sludging in the blood vessels of the brain or, less commonly; (2) direct infiltration of the brain with leukemia; or, even less commonly, particularly in children, (3) a red blood cell count so low that it causes lack of oxygen to the brain.

It’s thus far more likely that Makayla died of end stage leukemia, and that her stroke was the immediate terminal event, than it is that chemotherapy-related complications from many months ago resulted in a stroke. I have no doubt that Makayla’s family and people believe that the chemotherapy caused her stroke, but the likelihood that it did compared to the likelihood that progressive leukemia caused her stroke is infinitesimally small. From a medical and oncologic standpoint, it’s just not a convincing story, as much as they believe it. In a way, I can’t blame the Saults for believing that it was the chemotherapy that killed their daughter. I really can’t. It’s completely understandable. If they stopped believing that, then they would have no choice but to accept that it was the choice to abandon chemotherapy that doomed their daughter. That’s just not something that any parent is likely to be able to admit. In any case, once again, the “rights” of the parent trumped the right of the child to effective medical care.

It’s not (yet) too late for JJ

Makayla is now dead and buried. It is too late for her. Her family and community must deal with their horrible loss as best as they can. However, it might not be too late for JJ and other children elsewhere who are suffering from cancer but not receiving effective treatment. Fortunately, according to a press release from her family, she appears to be currently cancer-free. Not surprisingly, due to the usual misunderstanding that families who abandon chemotherapy for quackery for hematologic malignancies nearly always have, her family believes she is doing well because her latest tests have failed to find residual cancer:

The 11-year-old at the centre of a controversial ruling on aboriginal medicine tested negative for signs of cancer, her family says, months after she was pulled out of chemotherapy early in favour of natural therapies.

According to a published statement, the family credits the alternative treatment for the remission. But oncologists say it may be the result of the two weeks of chemotherapy the girl underwent at McMaster Children’s Hospital in August before her mother pulled her out.

Another story from Two Row Times reports:

Once we had the court ruling that upheld our right to use our traditional healthcare we sought out a oncologist [sic] who would work with our unique situation. I felt it necessary to have her closely monitored as we navigated through uncharted territory. Toronto Sick Kids agreed to fulfill that role. Of course we needed to hear the oncologist’s spiel about no child ever known to survive leukemia without chemo and they expect her to begin dying in mid January. I booked a biopsy for mid January. Its now 6 months following the diagnosis with only our choice of treatment. We received the biopsy results yesterday – NO VISIBLE CANCER!!!

An announcement was also posted on Facebook by Hippocrates graduate Jane Schweitzer describing the news.

Of course, JJ’s remission is far more likely to be the result of the chemotherapy that the girl underwent in August than it is to be due to Brian Clement’s quackery or whatever traditional healing methods they’ve also been using. I’ve explained this concept several times of late. For hematologic malignancies like this, there are several phases of chemotherapy, starting with the induction phase. The induction phase is designed to put the patient rapidly into remission. However, as pediatric oncologists (not to mention adult oncologists who treat hematologic malignancies) learned the hard way decades ago, it requires sustained courses of chemotherapy to prevent leukemias from rapidly recurring. Basically, it’s often easy to get a patient into remission, but keeping the patient in remission is much harder.

One good thing about this article is that the reporter interviewed some actual oncologists who explained this concept rather well:

“From my perspective, there’s lots that traditional healing can offer in terms of symptom management and support, but based on my scientific training I think it’s exceptionally unlikely that traditional medicine has cured her of her disease,” said pediatric hematologist and oncologist Dr. David Dix, a clinical professor at the University of British Columbia.

“It is quite possible that she went into remission after the first two weeks of chemotherapy,” he said. Dix said the likelihood of the cancer returning is “100 per cent” and that any return of the cancer will be more difficult to treat.

And, later in the article:

The typical course of treatment for lymphoblastic leukemia involves four weeks of intensive chemotherapy which puts “99.9 per cent” of people into remission, Dix said. That is normally followed by about six months of heavy chemotherapy, then about two years of maintenance chemotherapy.

“Achieving remission, even with a short duration of chemotherapy, is expected,” said Dr. Kirk Schultz, professor of pediatrics at the University of British Columbia. “The whole focus of chemotherapy in children with acute lymphoblastic leukemia is to get a curative outcome, that they cure the disease and it never comes back.”

And the conclusion of the article:

“Any pediatric oncologist would tell you that the likelihood of her disease recurring or relapsing is 100 per cent, that she’s at very high risk of recurrence for her disease,” said Dix. “When she does relapse it becomes more difficult then to get her back into remission. It’s very much better to get her back into chemotherapy as soon as possible.”

So what we have in JJ is, medically at least, a very similar story to that of Makayla Sault, just delayed. Her cancer will eventually recur, probably within the next year, and at that point it will be much more difficult to eradicate than it would have been if the girl had only undergone standard-of-care chemotherapy and completed the full course during her first pass It’s also been noted that there are significant differences between these cases. For instance, Makayla was much more bright and assertive than JJ apparently is, so much so that some believed her capable of making decisions about her own health care. Given her visions of Jesus as a rationale for stopping treatment, I’m a bit—shall we say?—skeptical that that was true. In contrast, Justice Edward found that JJ “lacked capacity to make such a life-and-death decision,” even as he ruled that the traditional medicine was so integral to aboriginal rights that JJ’s parents had the right to refuse chemotherapy for her.

It’s also important to note that right now it is not entirely clear exactly what treatments JJ is undergoing. For instance, this Two Row Times article states that since August she has “followed a strict protocol utilizing indigenous medicines, ceremonial healing and nutritional therapies – including consuming a 100% raw and sugar free vegan diet” and that she “has also pursued other nutritional and supplemental therapies under the wisdom and guidance of indigenous healers and advisors across North America.” Her mother in her statement wrote:

I believe our deep rooted faith in our medicine and ceremonial medicines, diet and exercise have been the reason for the biopsy results. I thank my Creator and all He set out on earth. I acknowledge our medicines. That they still fulfill their duties as our helpers, our healers. I acknowledge the spirit helpers that manifest themselves and their assistance in ways unknown to us still existing in the physical plane. I acknowledge my individual responsibility to look to Creation for what we need in all aspects of my family life. I acknowledge the individuals who still carry the ancient Haudenosaunee medicine knowledge. They choose to devote their lives from very early on to be a servant to the nation.I am eternally grateful to so many for the strength and support that, today has resulted in [my daughter’s] good health.

Yet, in an article published by CBC News, reporter Connie Walker describes an interview with JJ’s mother and a visit to the Hippocrates Health Institute by dryly noting:

There were two teas — one given to her by a healer in their community and another sent by someone she met on Facebook who says he is a medicine man from Saskatchewan.

The tea was likely the only indigenous medicine at Hippocrates.

As a First Nations person myself, I’m confident I can say that none of my ancestors abided by a strict raw vegan diet, or took high doses of vitamins intravenously or underwent cold laser technology. Regardless, her mother said Hippocrates was in line with her belief in natural medicine.

The entire story comes across to me as very consistent with Brian Clement being a particularly slick-talking con man and quack who didn’t like being questioned. Walker noted having viewed many of Clement’s videos in which he extolls the benefits of wheatgrass and attacks vaccines and “Western medicine” in general. One that stands out to me is this video of Clement being interviewed by Joe Mercola:

It’s chock full of pseudoscientific nonsense.

Walker reported further:

[JJ’s mother] spoke about the director, Brian Clement, with glowing adoration. “What struck me most,” she said, “was he was not afraid of cancer. Cancer didn’t shake him like it shook me.”

It was his words that convinced her to leave chemo. She said she called him from the waiting room at McMaster and he assured her that leukemia was “not difficult for them to deal with.”

It’s a claim he denied when we confronted him about it in Florida. He denied other allegations, too.

No, he was not practising medicine without a licence as some former employees of his alleged. Nor was he treating people battling cancer and other serious illnesses, he said. He was teaching them to heal themselves.

Can he give me the names of anyone he’s helped? I asked. “Get off my property!” he shouted.

Ah, yes. A classic 60 Minutes-like moment, the kind reporters love, when the target of their investigation gets ticked off and kicks them out of their office or off their property.

Sadly, the hard part will come when this girl’s leukemia, as is almost inevitable now, recurs. What will the parents do? Will they admit that the combination of “traditional” medicine and Brian Clement’s quackery didn’t work and finally let their daughter be treated with state-of-the-art chemotherapy? At this point, that is probably the best outcome that can be expected for JJ, because her mother is clearly never going to bring her back to have her leukemia treated correctly as long as the girl appears to be tumor-free, even though that would be the course of action that would maximize her daughter’s odds of survival. The problem, of course, is that this honeymoon period probably won’t last very long. The clock is ticking or the sands of the hourglass are running out. Pick your metaphor.

Unfortunately, I fear that when this girl’s cancer does recur, the parents will not change course. After all, this is what the girl’s mother has said:

In an interview with CBC News, her mother said, “This was not a frivolous decision I made. Before I took her off chemo, I made sure that I had a comprehensive health-care plan that I was very confident that was going to achieve ridding cancer of her body before I left the hospital. This is not something I think may work, this is something I know will work.”

Just as bad for JJ, it is doubtful that her mother will be able to admit that this “something” didn’t work, even after the leukemia recurs. Then we’ll have a second Makayla Sault, another dead aboriginal girl, with her family and community blaming the course of chemotherapy for her death, rather than the failure to complete her treatment for a very treatable leukemia.

The central conflict

How can such things happen? How can governments so routinely allow children to die due to medical neglect because that is what the parents choose, often based on religion, personal belief, or culture? If you want to know how bad it is, just consider the case of Herbert and Catherine Schaible, discussed by both Harriet Hall and myself. In 2009 the Schaibles chose prayer over antibiotics for pneumonia for their first child. The child died. The Schaibles received ten years’ probation and had to promise, in essence, that their other children who were not removed from their care would receive modern medical care. In 2013, a second child, who was 8 months old at the time, developed pneumonia and died the same way. It took the second death of a child before the state actually took their children away and put them in jail. As Steve Novella has pointed out, if parents only use medical opinions as a justification for choosing quackery or denying care, the state will usually intervene, as Ottawa is doing in the case of Marco Pedersen, whose son Aiden also has acute lymphoblastic leukemia, which Pedersen wants to treat with hemp oil. If, on the other hand, religion or culture is used as justification for choosing quackery over effective treatment, courts seem to be much less willing to step in and see that the child receives effective treatment.

This dynamic has definitely been at play in the two cases of the aboriginal girls. With Makayla Sault, both religion and her aboriginal culture led to the reluctance of authorities to intervene. With JJ, it’s primarily her culture. Indeed, her community and tribal elders fully supported the parents, as did Makayla Sault’s community and elders. In fact, when CAS was looking into Makayla’s case, New Credit Chief Bryan LaForme warned that hundreds of community members in the “Makayla Defence Force” would spring to action should the CAS attempt an apprehension. Emotion also ran high for JJ, as demonstrated by a Facebook post I cited in my previous post. I included the whole thing before, but for this post I will simply highlight a particularly-relevant part, so that you don’t have to go back. Accusing McMasters Children’s Hospital of trying to “undermine our way of life,” the Six Nations Elected Council stated:

The court affirmed that our use of traditional medicines was integral to our cultures, historically and today. The court recognized that our right to use our medicines is not subject to the approval of western medical practitioners.

And:

Forcing a First Nations child to undergo unwanted, mainstream, medical treatment is an affront to the dignity and autonomy of that child, our cultures, and our nations. Had our children been forced into treatment, it would have had a disastrous effect on their emotional, psychological, and spiritual well-being. Instead of being proud of their own traditions, they would learn that the laws, governance, teachings, and medicines of the Haudenosaunee and Anishinabe cultures were wrong and even dangerous. This is simply not true.

No, but Makayla Sault’s family learned that they were ineffective the hard way. Or they would have, if they had actually used traditional medicine instead of the quackery of a white man from Florida. Unfortunately, this view led JJ’s community hold fundraisers and provide JJ’s family with enough money to fly to Florida and pay the $18,000 that Clement charges.

Believe it or not, I understand, at least as much as a middle-aged citizen of an oppressor nation can, that aboriginal peoples have been treated horribly by the Canadian government, just as those in the US have been treated horribly by the US government. I know about, for instance, the Canadian residential schools, in which aboriginal children were forced to attend boarding schools away from their families and communities in order to assimilate them into the dominant Canadian culture. There, aboriginal children often suffered physical and sexual abuse. It’s not surprising that there still exists in Canadian aboriginal communities a great deal of distrust of the government and the medical system that facilitated such cultural imperialism, the same as the native peoples in my country very much distrust the government that drove them off their ancestral lands and onto reservations.

As simply as I view things, in which the life of the child is paramount, on the ground things are, sadly, often not that simple (although, I can’t help adding, they should be that simple). In the case of religion, because of the deference given religious beliefs governments are often very reluctant to intervene to stop religion-based medical neglect, as was the case with the Schaibles. Because of Canada’s abominable history with its native nations, Canada’s aboriginal peoples understandably tend to view even attempts to help two of their children through the lens of the residential schools and past oppression. Toxic attitudes common to many cultures, that of the US included, that ascribe absolute rights to parents over their children fuse with past grievances that led to current distrust and turn what should be a case of child welfare into a chance to assert aboriginal rights through the proxy of JJ’s case.

Unfortunately, among the tribes, few seem willing to speak up for these two girls’ right to the best shot at life medicine can give them. Thus, tribal authorities have done a grave disservice to aboriginal children in allowing their mistrust to lead to their using two innocent children as a weapon in their fight to obtain more autonomy. Meanwhile, Canadian authorities, aware of all these things, bend over backwards not to appear to be “undermining” the culture of the native peoples, even though they know it will cost the life of a child. In all of this, the rights of children as autonomous beings rather than the property of their parents or extensions of their parents’ cultural identity, are lost, possibly irretrievably.

How do we overcome this? Putting the child first, rather than religion, race, nationality, or culture, would be a way to start. If everyone involved could do that, just for a moment, for JJ there might be a chance to save her. Or maybe I’m just too naïve and JJ is doomed after all.

 

 

Posted by David Gorski

Dr. Gorski's full information can be found here, along with information for patients. David H. Gorski, MD, PhD, FACS is a surgical oncologist at the Barbara Ann Karmanos Cancer Institute specializing in breast cancer surgery, where he also serves as the American College of Surgeons Committee on Cancer Liaison Physician as well as an Associate Professor of Surgery and member of the faculty of the Graduate Program in Cancer Biology at Wayne State University. If you are a potential patient and found this page through a Google search, please check out Dr. Gorski's biographical information, disclaimers regarding his writings, and notice to patients here.