Respectful Insolence

Sometimes I hate being right

Believe it or not, there are times when I really, really wish I weren’t right.

No, I’m not implying that I’m right so much of the time that I wish I were wrong more often. I’m human and therefore perfectly capable of being wrong, sometimes spectacularly so. (Of course, as we all know, that sort of thing rarely happens on this blog, right? Right?) But sometimes, even as I know I’m right about something, deep down I hope that I’m not. Usually such cases involve watching patients choosing alternative medicine reach the point where they have to the consequences of their choice. Despite all my rants about the quackery that is the Hoxsey treatment and my lamenting about how the magical thinking that leads to the choice of such quackery over effective evidence-based medicine is almost certainly going to result in the premature end of young teens like Starchild Abraham Cherrix. deep down I always hope that in the end the credulous will come to their senses and abandon the quackery that threatens their best chance at survival and opt for evidence-based medicine or even that the quackery works and saves their lives. (I suppose that may be a form of magical thinking on my part.) Certainly, such has always been my hope with Abraham Cherrix, who, when last we left him, was doing about as well as could be expected, mainly because he had accepted radiation therapy, which was working to shrink his tumors, in addition to the “immunotherapy” woo that he had been pursuing at the Mississippi clinic of Dr. Arnold Smith, a radiation oncologist who is also into antiaging woo and “immunotherapy” with no scientifically convincing evidence of efficacy against cancer. My hope was that Abraham would be one of the rare survivors among patients with relapsed Hodgkins disease who underwent in essence only radiation therapy, but my fear is that he almost certainly won’t.

Such was also also my hope with another young cancer victim, a girl younger than Abraham, whose parents rejected conventional chemotherapy and pursued dubious “alternative medicine. Unfortunately, upon getting home from vacation, I became aware of some disturbing information. It now appears that young Katie Wernecke, the girl whose rejection of conventional medical treatments for her cancer is and whose parents’ desire to pursue therapies with no sound evidence of efficacy in cancer (such as high dose intravenous vitamin C) is often mentioned in the same breath as Abraham’s and whose father has expressed support for Abraham, is almost certainly doomed.

You might recall that a few months ago I had a bad feeling about how well (or, more specifically, now poorly) Katie was doing. My fear arose because of a post that Katie’s father had made on her blog, in which he urged people pursuing alternative treatments to Monitor Your Alternative Cancer Treatments or Die, in which he bluntly warned those seeking alternative therapies to follow a tumor monitoring program that is in actuality even more rigorous than most conventional cancer chemotherapy programs demand and stated:

You must monitor your tumor. Tumor markers are not always reliable. You can’t go by how you feel. By the time you feel bad it can be too late. Know what is going on with MRI’s which if you pay cash can be had for about $600. Whole body scans are about $1000 for cash. There is not enough information on alternatives and they do not work the same for everyone, especially if you have already had chemotherapy or radiation treatments. I’d rather try the alternatives first, but you must absolutely monitor your progress. Monitor with MRI’s so you don’t end up dying. Be safe and sure of your choice of treatment and its effectiveness. And now you have proof of before and after results of your alternative treatment.

Prior to the ominous warning above, Katie’s family had taken her to an unnamed medical practitioner, her father making the claim that he “really can’t say anything because it could jeopardize her treatment.” (This secrecy led some to speculate that perhaps the Werneckes had given up on alternative therapy and pursued conventional chemtherapy or radiation or, alternately, that the practitioner didn’t want to take the blame if Katie died.) Moreover, before that, last summer Katie was shown on her family blog, and she looked thin and not entirely well. Her father even implicitly recognized that Katie didn’t look healthy when he stated, “Katie is doing very well as you can see but she is not cancer free yet so there is still a battle to win.”. Taken together over the course of about four months, Katie’s father’s statements and his last warning about monitoring tumors during alternative therapy led me to observe:

My readers will slap me down if they think I’m reading too much into Mr. Wernecke’s post, but I fear that his words may be an implicit admission that the alternative medicine he has chosen is failing and that Katie’s tumors are growing. Indeed, it almost sounds almost like a plea. Note, especially, how Mr. Wernecke specifically mentions preventing tumors getting “out of control or chocks off bronchial tubes or arteries.” We know from news reports that Katie had a large lymphoma tumor in her chest, and these are certainly complications that could occur to Katie if her tumors were to start to grow again. Note also how Mr. Wernecke mentions that a conventional treatment might be needed in this case.

Today, my words sound so prescient that they almost scare me, and I really, really wish that I weren’t being shown to have been correct. True, it doesn’t take a real psychic (or even a fake psychic like, say, Sylvia Browne) to have made this prediction, but it’s still disturbing.

A couple of days ago, Katie’s father announced some very sad and disturbing news that confirmed my worse fears, specifically that Katie’s cancer had spread:

The original medistinum mass was dead. About 6 weeks after our last CAT scan Katie started having pain on her right side at the lower ribs. An MRI revealed a large mass there. This is at and below the scar where they put a chest tube in to drain her lung. We believe this cancer was seeded when they removed the chest tube. A CT/PET scan on November 10th revealed multiple hot spots of cancer. We spent the month of November in treatment again in California. We returned home on December 1st.

I really, really hate having been right about this.

Even if Edward Wernecke were correct in blaming the seeding of an old chest tube tract with tumor cells, such a seeding would be highly unlikely to lead to “multiple hot spots” of cancer; most likely, it would have resulted in only localized disease that could be treated with radiation. More likely, there was residual disease in her chest that was never taken care of because Katie never finished therapy, and now it has grown. The description that Mr. Wernecke gives leads me to infer that there is a large tumor mass recurrent in Katie’s chest, plus multiple other areas of growing tumor.

Irony upon cruel irony, faced with this information, it now appears that the Werneckes are following in Abraham Cherrix’s footsteps, right to the Mississippi clinic of Dr. Arnold Smith:

On December 12th we travel to Mississippi to get a second opinion. We start some immunotherapy to help Katie’s body fight the cancer. Katie has not been able to mount an immune response because M.D. Anderson removed her thymus gland back on June 30, 2005 without our approval. When we asked why, the doctor at M. D. Anderson said “she didn’t need it.” Well, the thymus makes your t-cell and b-cell lymphoctyes and makes the hormones that regulate all of the immune system. We returned on Christmas Day. This cancer has proved resistant to all chemo and radiation treatments. So we are trying something different.

Removing the thymus almost certainly had nothing to do with the relapse of Katie’s tumor in the chest. The immune system can function without the thymus, and, I would point out, Katie’s tumor developed while her thymus was intact. Indeed, thymectomy even in infancy, while causing a modest decrease in T-lymphocyte levels, does not appear to cause measurable decreases in objective measures of immune function. My best guess is that, while doing mediastinoscopy as part of the workup to determine the stage of Katie’s tumor, the surgeons suspected that the thymus was involved with lymphoma. (If there are any pediatric oncologists out there, perhaps they could clarify this issue.) Moreover, Dr. Smith seems a bit more realistic than most alties in one way. Specifically, he has not promised that he could cure his other famous patient, Abraham Cherrix and has even acted to dampen hopes and lower expectations. My guess is that he’ll do the same here.

Of course, in the interests of intellectual honesty, I must acknowledge that, even if Katie had completed the complete course of chemotherapy and radiation therapy, it is possible that she would have ultimately reached this sad point anyway. Her tumor appears to be an aggressive one. However, if she had pursued conventional therapy, there is almost no doubt that she would have had a much better chance of avoiding this cruel fate than she did pursuing “alternative” therapy; these days pediatric oncologists are amazingly successful in eliminating cancers that used to be almost uniformly lethal.

Unlike all too many “alternative” medical practitioners, oncologists generally acknowledge the limitations and side effects of their antitumor therapies. In the case of childhood malignancies, the side effects from the radiation and chemotherapy could include growth retardation, infertility, damage to the lungs, and secondary malignancies 20-30 years later, but these risks and side effects must be weighed against the 100% fatal nature of the tumors these therapies treat. Indeed, it was the very honesty of Katie’s oncologists about these potential long-term side effects that scared her father into rejecting further conventional therapy and turning to “alternatives.” Anyone want to guess what probably happened next? Although I cannot know personally, my best guess is that the blandishments of alternative practitioners promising to cure Katie’s cancer without the potentially nasty side effects of conventional had their effect. Mr. Wernecke seems to have been pretty distrusting of the “conventional” medical establishment to begin with, and his distrust, coupled with his belief that prayer could help his daughter, likely made him even more receptive than average to such promises of cure with little or no pain. The bottom line is, in essence, that the first shot at a new cancer is the best shot doctors have to cure it, and Katie unfortunately missed that. Now, Katie and her parents are left increasingly desperate, and, even if they did return to M.D. Anderson to pursue conventional therapy, the odds of success at thsi point would be very small. At this point, it probably doesn’t matter if they pursue alternative therapies or conventional, except that, I would argue, conventional therapy can provide better palliation.

It’s a new year. For most people, the dawning of a new year brings hope for better times ahead and a desire to work to achieve them. For the Wernecke family, alas, 2007 brings the almost certain probability that Katie will not see 2008. I’m still able to have enough magical thinking left to hope for a miracle that would save her life, but my skeptical side knows that the odds of a spontaneous remission at this point are vanishingly small. My only remaining hope is that Abraham Cherrix pays attention to what has happened to Katie and changes course before it’s too late for him too, if it isn’t already too late.

It’s times like these that I wish that woo worked.

Comments

  1. #1 Nes
    January 2, 2007

    I think you forgot to complete a thought there, Orac. The 3rd to last paragraph (counting the last line as one) ends with

    At this point, it probably doesn’t matter if they pursue alternative therapies or conventional, except that, I would argue, conventional therapy tends

  2. #2 anonimouse
    January 2, 2007

    This is a sad, depressing tale that will mean absolutely nothing to the legions of alties who swear that mainstream medicine is evil. Katie will be discarded and forgotten by the alt-med freaks like all of the others before her.

  3. #3 Jeff Fecke
    January 2, 2007

    If, FSM forbid, my daughter should ever become this ill, and if I should lose my mind and refuse to take her to see a doctor with actual credentials and instead turn to faith healing exclusively…please, someone kill me. And make it painful.

  4. #4 TW
    January 2, 2007

    I agree with the other commenters. It is sad and depressing to see that people can get away with abusing children in this manner. The alternative “therapists” will continue to weave their cult magic and people will die despite their (foolish) belief.

  5. #5 famildoc
    January 3, 2007

    This is child abuse.
    They are torturing these kids to death by treating them with magical bullshit and promising to cure them rather than giving them the realistic odds of real therapy – using the word “conventional” implies that there are actual alternatives , Orac .
    These people are child molesters – the parents and the “healers” , we should stop confusing this with a freedom of choice issue. It is goverment’s responsibility to protect these kids and I hope the non-elected judges that allowed this will sleep well after their funerals.

  6. #6 Andrew Dodds
    January 3, 2007

    My news was worse..

    http://tinyurl.com/ybd55h

    About two thirds of the way down, there is:

    Her family decided to sell their home because of the cost of treatment, and the fact that neither Mr, nor Mrs, Trezise could work while caring for their daughter.

    Note that this is the UK, which means that the entire cost of conventional treatment came through the NHS. The cash went on any and every kind of woo going; so not only have they lost their daughter – who spend most of the last few months of her life drinking assorted vegtable juices – they have also lost their house. Perhaps the alties will give a refund.

  7. #7 Andrew Dodds
    January 3, 2007

    My news was worse..

    http://tinyurl.com/ybd55h

    About two thirds of the way down, there is:

    Her family decided to sell their home because of the cost of treatment, and the fact that neither Mr, nor Mrs, Trezise could work while caring for their daughter.

    Note that this is the UK, which means that the entire cost of conventional treatment came through the NHS. The cash went on any and every kind of woo going; so not only have they lost their daughter – who spend most of the last few months of her life drinking assorted vegtable juices – they have also lost their house. Perhaps the alties will give a refund.

  8. #8 sophia8
    January 3, 2007

    House prices in the Trezise’ area start at £130K.
    Mr Trezise was self-employed, which probably means he had no pension scheme to cash in; the building trade is seasonal and he would have needed the property as surety to carry his business through the lean times.
    So, as well as being homeless, he probably can’t even start up again in business. It would be nice if he decided to sue the alties for compensation. But not very likely.

  9. #9 Marcia
    January 3, 2007

    I agree with anonimouse. There will always be people like the Werneckes. In the past, it was easy to be lazy about one’s beliefs, spending little time researching woo’s lack of evidence. Today, with the internet, it’s much easier, thanks to bloggers like yourself, pubmed, etc.

    But true believers, even in post-religion societies like Britain, still have little understanding of what it takes to be healthy, and cling to old belief systems.

    Despite what you read here
    http://news.bbc.co.uk/1/hi/wales/6226365.stm
    the avalanche of studies will doom the woosters. It’s only a matter of time.

    However, sadly, there will always be Werneckes.

    Keep up the good work as one must call to task individuals like her father who will blame conventional medicine practitioners right up to the bitter end.

  10. #10 Andrew Dodds
    January 3, 2007

    Marcia –

    The problem with the internet is that it is two edged – try googling ‘alternative cancer therapy’ for a full range of people who will happily take every penny you posess (I’m quite sure they wouldn’t even bother checking if you had cancer).

  11. #11 Amy Alkon
    January 27, 2007

    Kids shouldn’t be allowed to die because their parents are irrational and stupid. Cases like this should be treated like any other child abuse/neglect case.

  12. #12 factician
    March 1, 2007

    The other problem is that when you google cancer treatment, a large proportion of the google ads that come up are for crazy altie treatments. For every good website out there, there’s a bunch that are crazy.

    Orac hit the nail on the head with “Indeed, it was the very honesty of Katie’s oncologists about these potential long-term side effects that scared her father into rejecting further conventional therapy and turning to ‘alternatives.’ ”

    If someone tells you they can cure your child without side effects, who wouldn’t have troubles staying rational? There’s nothing rational about having a family member with cancer. I don’t blame the parents. I blame us as citizens for not demanding that the government regulate these crazies. And I blame personal injury lawyers for not following families like this and suing the alties out of existence.

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