Respectful Insolence

Magical thinking versus lymphoma

I’ve written several times about two young victims of what is normally a highly treatable cancer (Hodgkin’s lymphoma) and how, with their parents’ support, they have jeopardized their lives by choosing alternative therapies. The first, Katie Wernecke, was initially taken from her family by the State of Texas, but her parents ultimately won a court battle and took her out of the state for altie treatment with vitamin C infusions. Presently, she is somewhere out of state receiving some unknown treatment that, according to her father, he cannot disclose or the doctors will no longer treat her. The second, Starchild Abraham Cherrix, refused treatment after his first round of chemotherapy and, when last I mentioned him, was planning to go to a clinic in Tijuana to put his life in the hands of quacks administering the Hoxsey treatment.

Sadly, it looks as though one of them is losing his battle, as his tumors continue to grow:

NORFOLK – The cancer has grown.

That’s the message a 16-year-old boy from the Eastern Shore received from court-ordered X-rays at Children’s Hospital of The King’s Daughters on Friday to assess cancer he was diagnosed with last summer.

The news was not surprising, according to Abraham Cherrix, who said he would keep battling his Hodgkin’s disease with the help of an alternative medicine doctor in Tijuana, Mexico.

The Chincoteague boy and his parents have been fighting in court to continue the treatment despite a request from the Accomack County Department of Social Services that Abraham be forced to return to more conventional therapies.

Abraham went through one round of chemotherapy at CHKD last fall shortly after he was diagnosed with the lymphatic cancer. An oncologist there discovered the cancer was still active in February and recommended another round of chemo, plus radiation treatment.

Hodgkin’s disease, a lymphatic cancer, is highly treatable and has a five-year survival rate of 80 percent or better, depending on the stage the disease is in when detected.

However, Abraham, who lives with his parents and four siblings, did not want more treatment at the hospital. The first round had made him nauseated, feverish and tired. He thought the effects of another round of chemo, plus the health risks associated with radiation treatment, would be too great.

Of course the tumors grew! The Hoxsey treatment doesn’t work! He might as well just do nothing; he’d get the same result. Every month Abraham doesn’t get the treatment he needs makes it less likely that conventional medicine will any longer be able to help him.

But I don’t want to dwell on this depressing development. I”m actually more interested in focusing in on one aspect of this latest update, namely the magical thinking that leads to an amazing double standard among adherents when it comes to alternative medicine:

Abraham said he also was informed that the cancerous tumor, which is near his windpipe , had grown since February.

Abraham said he was not surprised. “I care about it, but I know it will get better,” he said after the test. “If I follow the diet I’m on and have faith, it will get better.”

The teen said he also had noticed that a different tumor, in his neck, had grown since the beginning of the year but that it stopped growing in May, which he attributes to his alternative treatment.

Notice that the Cherrixes quickly abandoned conventional therapy when one regimen of chemotherapy failed to completely eradicate his lymphoma, necessitating more chemotherapy and the addition of radiation. In contrast, in this case, not only did his tumors fail to shrink, but they continued to grow while he was on the Hoxsey treatment. So, when confronted with unequivocal evidence that the Hoxsey treatment is not eradicating his tumors and that they are continuing to grow, what does Abraham do? He makes excuses for the treatment’s utter failure thus far and sticks with it. Only magical thinking can explain this. Certainly no hard-headed rational evaluation of the facts could. And, indeed, his statement that if he follows the treatment and “has faith,” everything will turn out all right is surely as magical as anything I’ve yet heard. (Whatever happened to “God helps those who help themselves”?) Clearly, he gets it from his parents, as his father Jay Cherrix makes similar excuses:

Jay Cherrix said the doctors gave the family copies of the X-rays so they can take them to Abraham’s doctor in Tijuana. Jay Cherrix said that visit will include blood tests and an exam that should tell them more about the cancer.

He said he still believes in the route Abraham has chosen for himself.

“Cancer is a serious disease, and it takes time to rid yourself of it,” Jay Cherrix said. “It can go either way.”

What that it were so! Unfortunately, unless rationality overcomes this magical thinking, there is really only one way this can go.

I note that this article happens to be a couple of weeks old. Abraham was supposed to go to Tijuana in the middle of June, but I have not been able to find out what happened. However, he is supposed to be in court again on June 29; so I’ll keep an eye out for reports after that. Whatever hope there is, however, is rapidly fading, and, although I dread it, I expect to see Abraham’s obituary sometime in the next year or two.

In the meantime, Katie Wernecke’s parents are also demonstrating their own brand of magical thinking. On their family blog Pray for Katie, they describe Katie’s celebrating her 14th birthday:

On June 11th Katie celebrated her 14th birthday at home with family and friends. Katie is 2nd from right in the pool picture below. The picture on the left is Katie with her father. Katie is doing very well as you can see but she is not cancer free yet so there is still a battle to win. She is in better physical condition than ever. Contrary to reports we are not in hiding or getting some secret treatments. It is just unknown to the press.

First off, note how Katie’s father glosses over the fact that Katie’s cancer is still there, despite all the vitamin C treatments and despite all the other treatments that he’s said that he can’t reveal for fear of the doctors refusing further treatment. Although Katie doesn’t look bad in the pictures shown, she certainly doesn’t exactly look completely healthy, either, particularly in the first picture. Indeed, I seriously doubt that what I see now in those pictures represents Katie in “better physical condition than ever.” Second, Ed Wernecke forgets to mention why Katie’s treatment is “unknown to the press.” It’s because he won’t tell them and, presumably, he’s being secretive about where he’s taking her for “treatment,” making it more trouble than it’s worth to them to find out. After all, he himself has said that he can’t tell them for fear that the doctors will refuse to treat her anymore. It’s enough to break your heart to watch this story from the sidelines, utterly unable to reverse the harm such irrationality is causing to these two young cancer victims.

But his magical thinking goes even further than that:

Our government and medical establishment has lost the War on Cancer after billions were spent on research and squandered. You can’t cure something if you don’t even know the cause of it. All you can do is treat the symptoms. Chemotherapy and radiation are not solutions; although it seems to help a few in the short run, the use of these does nothing but cause cancer again. You have been lied to. The use of mamograms will cause more breast cancer, there are safer alternative detection methods such as thermography.

Shades of Kevin Trudeau!

First off, it’s utterly incorrect that the use of mammograms “cause more breast cancer.” The dosage used is very low, and the value of early detection far outweighs the infitessimally increased risk of cancer from yearly mammography. Heck, if he’s that worried about radiation exposure, I hope he doesn’t take cross-country flights at all or live near areas where environmental exposures are higher than in most areas, such as the northeast region of Washington State. Moreover, thermography is an unproven technology that, contrary to the claims of its backers, is not superior to mammography. It’s not even close. Second, while it’s true that second malignancies can be a problem in children treated for childhood cancers like Hodgkin’s disease, forty years ago Hodgkin’s disease was a virtual death sentence. Consequently, no one survived long enough to get the complication of second malignancies. In a calculating risk-benefit ratio, the relatively small risk of secondary malignancies is massively outweighed by the benefit of surviving a disease that otherwise would have killed you, and the vast majority of survivors of childhood cancer treatment or treatments for other malignancies do not get secondary malignancies related to their treatment. Mr. Wernecke seems to think that it’s possible to produce a treatment for cancer without risks. Maybe it is. Someday. But such a treatment does not yet exist.

It’s magical thinking again, the same magical thinking that led the Werneckes to abandon conventional medicine and put their daughter in the hands of doctors who, according to Katie’s own father, are likely to abandon their Hippocratic Oath if he reveals what treatment it is that Katie is getting. It’s the same sort of skewed thinking that Abraham demonstrated when he refused a CT scan because of fear of the radiation, when a cancer is ravaging his body and the tiny amount of radiation he would get from the scan would make no difference in that outcome. He is afraid of a very tiny risk (that of a secondary malignancy from the radiation from a CT) and oblivious to a very acute, life threatening risk (the risk of death from his essentially untreated lymphoma). The fact is, if he doesn’t get his cancer treated properly, he won’t live long enough to have that tiny chance of developing a malignancy from the amall amount of radiation from a single CT scan, but magical thinking won’t let him see that. The same magical thinking seems to spiral outward from such people, leading them to set up legal defense funds for Abraham or to compare conventional cancer treatment to “Geneva Convention-levels of torture” while setting up straw men and knocking them down as “arguments” against conventional medicine.

Sadly, the problem with magical thinking is that, no matter how strong it is for how long, reality is always stronger. I’m afraid that reality is finally rapidly catching up with both Abraham and Katie, and I’m finding it hard to bear to look anymore. Indeed, I may have to turn off my Google Alerts on these two; I’m not sure how I’ll react when the inevitable news of their deaths shows up in my in box.

Comments

  1. #1 David Harmon
    June 26, 2006

    Sorry Orac, but at this point, it’s really “evolution in action”….

  2. #2 anjou
    June 26, 2006

    This is indeed very sad. Have posted it on lymphoma support boards.

  3. #3 TheProbe
    June 26, 2006

    I agree with David. Darwin will cleanse the human race.

    However, back in the real world, the AltNuts will find a way to blame conventional medicine…like the first round of chemo made the cancer impervious to the Hoxsey treatment…that sounds right.

  4. #4 Bronze Dog
    June 26, 2006

    Despite the altie memes’ potential danger, they aren’t quite dangerous enough to make themselves extinct. They allow a handful of parasitic organisms to thrive, encouraging said parasites to continue the spread of the bad memes.

  5. #5 Ali
    June 26, 2006

    I didn’t realize there was a proven genetic link to altie behavior. Well, why not gene therapy instead of letting them die off, then?

  6. #6 modusoperandi
    June 26, 2006

    The kid is named Abraham…wouldn’t that be a more appropriate name for the father?

  7. #7 anonymous
    June 26, 2006

    I really object to the comments about Darwinian selection and cleansing the gene pool. These kids are teenagers, for God’s sake. They didn’t get to choose their parents or have any say in their parents’ misinformed beliefs.

    Is this all about “magical thinking” or is there also a very strong element of fear and denial about the potential death of a child? It is easy to reduce the story to a duel between science and alternative beliefs, and overlook that this is also a messy, emotional and complicated story about human beings.

    It’s just a tragic situation.

  8. #8 Sid Schwab
    June 26, 2006

    I think the above anonymous post is a good one, and heartfelt. But every parent, presumably, is scared to death over the prospect of losing a child. So that’s a given. So what is it about those that turn away from science, from data that show what works and what doesn’t, and go elsewhere? I agree the kids are the innocent victims — which is why courts have been known to intervene. But it is, in fact a choice — if not a duel — between science and alternative beliefs. And it’s both a mystery that so many seem willing to choose the latter, and a source of real and reasonable fear for where our country is headed. I sense that those who deny fact to fit their beliefs are on the rise, numerically and influentially. And it worries me. For my son.

  9. #9 Jim Anderson
    June 26, 2006

    Out in Washington state we narrowly avoided tragedy. A mother kidnapped her child from a hospital, preferring vitamins and other alternative treatments to dialysis and surgery.

  10. #10 R
    June 26, 2006

    I hope I can explain the following delicately enough so that I’m not misunderstood –

    Last week on PBS, there was a documentary called ‘A Lion in the House’, about 5 families who each had a child with cancer. There was one family that (IMHO) showed a different sort of ‘magical thinking’. They had a young girl whose leukemia had not responded to treatment after 2 years at a children’s hospital, so the parents and the doctors agreed that she would go home and begin hospice care.

    After a few weeks at home, the father, in a moment of desperation, called a young oncologist at the hospital, asking if there wasn’t something else that could be tried. Against the wishes of the mother and even the little girl, and against the advice of the hospice nurse, chemotherapy was started again. The day the girl died, she was still getting chemotherapy.

    This seems to me a situation that is 180 degrees opposite of that of the Abraham Cherrix, but in this case it’s one where a parent has put so much faith in Western medicine, that he can’t believe there isn’t something that can be done to treat his daughter’s leukemia, to the point where he authorizes treatment for the child, even when it’s clear that her case is hopeless.

    I agree with the 7th poster above, that parents in these situations, in an effort to keep their child from dying, will sometimes make decisions that aren’t well thought out, or not in the best interests of their child.

  11. #11 Andrew Dodds
    June 27, 2006

    In response to R and anonymous:

    In some ways, the very success of modern medicine, which has made early non-accidental death very rare, is to blame for this. A hundred years ago, death of both children and middle aged adults was common, and hence as medicine got better we coud clearly see the improvements – and know that medicine worked.

    Now that death is so unusual, people really can live in denial about serious illnesses. If you don’t really believe that a person will die of their cancer, then the side effects of treatment may seem too harsh. And TV tends to encourage these beliefs – how many times have you seen some sort of miracle cure turn up and cure the patient at the last moment?

    It’s more obvious with vaccines, of course. You have to wonder how many of those parents who have refused to vaccinate their kids think that they could turn up at A+E and get a quick cure if anything did go wrong.

    The media certainly have a role to play; certainly in the UK there is a disgraceful slant towards alternative ‘medicine’ (witness the Daily Mail on MMR); why they don’t play up the tragic stories of children that die as a result of this, I don’t know; it’s the sort of thing that tabloids do. Yet if peoplke are not hearing about the deaths, they will still go on believing that they are not risking anything.

  12. #12 David Harmon
    June 27, 2006

    Anon: “I really object to the comments about Darwinian selection and cleansing the gene pool. These kids are teenagers, for God’s sake. They didn’t get to choose their parents or have any say in their parents’ misinformed beliefs.”

    Well, that’s the thing… Evolution doesn’t care about whether someone “deserves” to die, any more than gravity does. It doesn’t even care who survives, because it’s not deciding which organisms are “best”. Instead, it’s discovering that information, purely by trial and error. What we see as the “results” of evolution reflect the slow accumulation of those trials, where the prize for “winning” is (roughly) that your descendants get to keep playing. Human concepts of “justice” can be seen as a concerted attempt to push our own goals “onto the table” by applying a few selective pressures against ourselves. (E.g, we don’t want to live in fear of our neighbors, so we make a point of killing or otherwise squelching murderers and such.)

    Note that Ali is at best half-right with “Darwin will cleanse the human race”. If we survive for another few hundred or thousand generations, we might see some changes — but they won’t necessarily be the ones we expect, or want. Consider that on the one hand, we’ve already spread carcinogens etc. far and wide. On the other, it is disturbingly possible that our high-tech civilization may collapse in the near future. Suppose that the use of expensive medical treatments for cancer turns out to give less “selective advantage” than, say, intrinsic resistance to carcinogens?

  13. #13 DJ
    June 27, 2006

    Dare I say that these are nominees for the Darwin Awards?

  14. #14 Socialist Swine
    June 28, 2006

    DJ,

    If these were adults making the decision to take themselves out of the gene pool with the help of quacks then I would agree that they would definite Darwin Award worthy.

    The fact that it’s kids who’s parents would rather be more hippieish than have live offspring, would lead me to suggest that these two example are more representative of child abuse or at the very least cases of very bad parenting.

  15. #15 TheProbe
    June 28, 2006

    Cherrix father and son were on CNBC last night (a major find for a dial flipper). The bottom line to this story is that this parent is allowing a 16 year old who had one course of unsuccessful chemotherapy to choose his treatment. Dad seemed to have no input into this decision, and Mom was not even mentioned.

    For comic relief, they were followed by Kevin Trudeau. Kev was asked several pointed questions and, instead of answering them directly, went off into the conspiracy thumping he uses instead of facts.

    After that, I watched a re-run of Sponge Bob for something that was intelligent.

  16. #16 anjou
    June 28, 2006

    On the conspiracy theory front– a patient advocate friend and I were recently accused of being part of it and having financial ties to “big pharma” and the “med establishment” because we wrote and posted this page for lymphoma patients to counter some of the potentially harmful lay advice given on the support boards….
    http://www.lymphomation.org/CAM-layadvice.htm Guess the poster was a fan of Kevin Trudeau……this sort of paranoia astounds me!!

  17. #17 Osler
    June 29, 2006

    Related story:

    Family files lawsuit against doctors and the state of Utah over attempt at forced chemotherapy:

    http://deseretnews.com/dn/view/0,1249,640187715,00.html

    http://sltrib.com/utah/ci_3948653

  18. #18 Nana
    June 29, 2006

    Another aspect I see quite often in cases such as these is the appeals to the public for donations to pay for dubious medical treatment for the victims. Often, thousands of dollars are donated by people thinking these treatments are legitimate and ends up in the pockets of the quacks in another country.

  19. #19 Ali
    July 1, 2006

    David Harmon said:

    Note that Ali is at best half-right with “Darwin will cleanse the human race”.

    Please note that I did not make this statement. My comment was in fact a sarcastic objection to this statement.

  20. #20 Susan
    July 2, 2006

    As a cancer-kid parent I know how hard it is to submit your child to chemo and radiation. What I don’t understand is how these families can avoid looking at the big picture. Do you want your child to make it to adulthood or do you want to maintain their fertility? Do you want to risk secondary cancers when they are adults or let the primary cancer kill them now?

    I admit- I am biased. My son is on his second relapse of stage IV neuroblastoma. He has had every kind of treatment out there. He is sterile, has hearing loss, chronic diarrhea, delayed growth, curvature of the spine, and who knows what else wrong with him besides the cancer. Guess what? He is happy and all he wants to do is be a kid. He wants to play, go to school and be with his family. If only all of these “horrible” treatments could actually cure my child.

  21. #21 David Harmon
    July 2, 2006

    Sorry Ali, you’re right… My bad.

  22. #22 Birdie
    July 12, 2006

    Susan writes, “Guess what? He is happy and all he wants to do is be a kid. He wants to play, go to school and be with his family. If only all of these “horrible” treatments could actually cure my child.”

    Susan reminds us all of the salient issue. It is not one of rejecting mainstream doctors nor of being duped by charlatans and in need of rescue by Paladins and medicos.
    At some point this issue of altie Vs. established treatment becomes not one of pundits and pontification on the merits of chemo, prayer and/or medical ethics, but one of Quality of Life. Is vomiting, sick and twisted inside in fear and loathing of the “cure” through one’s young adulthood worth the possibility of 5 or so more years of vomiting, feeling persecuted and tormented, feeling at odds with life, engaged in curative pursuit which keep you from simple enjoyments? Those who seem so harsh in their postings and attacks of Katie, Abraham et al, seem off balance to me as I think it is easy to stand on the sidelines and kibitz, spouting platitudes and procedure. Somewhere in all this cerebral blogging, I don’t see the other side; the coin face where the patient can be locked into a maze of unacceptable choices, facing the conclusion that there is no cheese-filled center point, and that a few years of ignorant normalcy or false hope or even an noninvasive and ineffective dietary course of treatment might at least allow for sunspots of humanity. Certainly an optimist’s view is that the magic of the morning sunrise will always spurn one onward to embracing life, braving the cure despite the present distress. I think this vain, standing off to the side as many of us do at a point of wellness and in our complacent far-off present, unaware of the tangible fears of embracing a hairless, nauseated childhood, feeling ostracized and freakish, a science experiment more than human being. At some point the compassion of the suffering needs outweigh the notion of right and wrong, or the implied insult to a curative means when a patient exercises his free will not to follow it.
    Having been a diabetic for 30 years, I have observed how the formula changes; my own personal carbohydrate to insulin ratio, neuropathy, impotency, & dietary restrictions. The terrain keeps changing and the hill gets steeper. I have seen some methods espoused and then abandoned, or broadened or outdated. I do follow the established treatment plan and I inject newer synthetic insulin to keep my body going from point to point in a Frankensteinesque dance of first aid without cure. And still I go high and still I go low and I fall off the path and fall down often. When I do, the choice is mine as to how I want to get up or if I want to get up at all.
    At some point the constancy of being beaten down takes its toll, the notion is inescapable that my life is being run by the disease and the regret over the loss of things in which I can no longer participate looms so melancholy and palpable that I wonder if enduring the curative prognosis is worth its limiting and reductive effects. Is what I am saving myself from worth what I am saving myself for?

    I suppose my deepest comment to all is that those revoking prescribed method seems to highlight the chronic march toward death that we all experience in spite of our good work at heart smart diets, our good intention in daily vitamin and our dogged diligence to doctor’s orders. Perhaps this fear of our own mortality is what draws out your extreme bile and ire, directed at the sick who are trying to eke out their lives in the face of adversity in their own humanly fallible ways, perhaps some of them gone astray, perhaps some never secured an escape or reprieve by any means.
    As stated before, I think the quality of the life experience is ultimately paramount over how long one can make it last. I think to lose sight of this and inflict one’s own prescribe methodology of treatment on another belies the foundations of both Hippocrates & healing.

  23. #23 phil
    July 12, 2006

    my son’s pediatrician say’s(about my boy’s recovery from autism) “it’s a miracle”. The doctor is a good man.
    He believes in miracles. Established medical practices kill 200,000 to 1,000,000 americans every year. Heck, acetaminophen is killing over 10,000 people per year.
    I pray God the Almighty, The Lord of Heaven and Earth, gives these two children the Healing their bodies need.
    I also pray God gives the opiners here the spiritual healing they so desperately need. May GOD have mercy on us all.
    Sincerely, Phil

  24. #24 HCN
    July 12, 2006

    Phil said “May GOD have mercy on us all.”

    Which one?

  25. #25 Amy Alkon
    July 16, 2006

    I think belief in god probably contributes to people believing in unproven crap. If you can believe, entirely without evidence, that there’s some Imaginary Friend in the sky moving all of us around like chess pieces, it’s a short hop to believe, entirely without evidence, that a tonic of expensive wheat grass juice will make cancer go away.

    Phil, it’s 2006. You have the capacity to reason, why not use it?

  26. #26 Orac
    July 22, 2006

    Because of the number of comments on this post, along with new developments, I have closed comments. If you wish to comment on this case, please go to my latest post on the Cherrix case.