Respectful Insolence

I hate to end the week on a downer, but I came across this last night and, given my attention to the case of Katie Wernecke (the girl whose parents chose dubious alternative medical therapy over the radiation therapy she needed for her lymphoma) over the last several months and the recent news that her cancer had returned with a vengeance, it’s hard for me not to mention what I’ve found now, rather than waiting until the weekend or Monday.

First, Katie’s father has posted a story written by Katie on the family blog: Hope. It was really hard for me to read this, as it’s a heart-wrenching tale that, in light of what we know about the recurrence of Katie’s lymphoma, strongly suggests that Katie knows what’s in store for her soon. This story also reinforces in my mind what a waste it was that Katie’s best chance for a cure when her cancer was first treated was squandered in favor of ineffective “alternative” therapies. If you’re the type of person who’s prone to tearing up at a sad movie, you probably shouldn’t read this until you’re alone. (Apparently, this story was written for Katie’s English class; I don’t know how the teacher dealt with reading it.)

Second, the story sets up a program that Katie is starting called Teddy Bears for Cancer Kids, where she will be distributing Teddy bears to children with cancer.

It sucks to lose such a great kid when there was a decent chance that it didn’t have to happen.

More:

Hope by Katie Wernecke

Teen battling cancer writes about dying victim named Hope

Comments

  1. #1 Elf Eye
    January 26, 2007

    I was crying midway through the story, but I still couldn’t help but notice that the story depicts “conventional” therapy as unable to address a case of childhood cancer. Katie may know she’s dying, but she still doesn’t understand (or maybe acknowledge) the sequence of events that has brought her to this point. I suppose that’s understandable, though, because if she did understand she’d have to on some level blame her parents, and right now she needs them more than anything else in the world.

  2. #2 Technicolour Jorn
    January 26, 2007

    I’ve been bawling like a baby reading her story “Hope”

    Maybe she would be in a similar situation if she had had the best treatment.

    She may never know though. For whatever reasons the best wasn’t given to her. Instead of the best we know through decades of hard work, she’s had a few unsupported theories laid upon her.

    Good luck Katie.

  3. #3 rrt
    January 26, 2007

    …but I still couldn’t help but notice that the story depicts “conventional” therapy as unable to address a case of childhood cancer.

    Which further highlights the tragedy.

    This sucks.

    …and I just can’t think of anything else to say. I want to rave at the parents, but what the hell good will that do now? It’s not like they aren’t suffering, if vengeance is what I want.

  4. #4 Amy Alkon
    January 27, 2007

    Having morons for parents shouldn’t be allowed to be a death sentence for a child.

  5. #5 Orac
    January 27, 2007

    Amy: I understand your sentiment and feel that way too, but at this point Katie is probably incurable and needs her parents, who, as misguided as they were in dealing with her therapy, still love her. They’re going to have to suffer the death of their child. If they come to the realization that their choice bypassed the one best chance for Katie to be cured, their guilt will be torture enough for them. Unfortunately, they’ll probably end up blaming conventional medicine.

  6. #6 TheProbe
    January 27, 2007

    Let’s turn this around a little bit…

    There was a news story in Newsday a few weeks ago about a young man with a disability who found a job for the holidays:

    http://www.newsday.com/news/local/longisland/ny-libear1231,0,211714.story

    What got to me is the part where other stores turned him away and WHY they turned him away.

    Two weeks ago, while doing some shopping at the mall, my son and I went into the store and met John. Very nice young man, who is enjoying his celebrity status. The manager was so pleased with John’s work, he kept him on after the holidays.

    Of course, we took the opportunity to congratulate the manager and, since a friend of my son is about to undergo spinal surgery we bought her a get well bear. We made sure to tell the manager that hiring John made an impact on our decision.

    So, let’s turn this around a bit…and if anyone is going to donate a bear to Katie, Build It Yourself!

  7. #7 Deech56
    January 27, 2007

    I just read the story and the a couple of entries in their blog. As a medical researcher and a father it tears my heart out to see the path the parents have taken. I’ve worked with physicians at MD Anderson, particularly their radiation oncologists, and they are among the most caring, and expert, people I know. To see the posters on their blog peddle their useless nostrums makes it even harder.

  8. #8 anonimouse
    January 29, 2007

    Amy,

    I agree. The parents made an awful, stupid decision regarding her child’s care.

    But at this point (barring a dramatic turnaround) Katie’s probably not going to ever fully recover. She’s a young kid who need her family right now, and piling on her mom and dad isn’t the least bit productive.

  9. #9 ED
    January 29, 2007

    The Katie Wernecke case is associated with a later case of Abraham Cherrix. Orac makes the following comments on his blog at: http://scienceblogs.com/insolence/2006/09/starchild_abraham_cherrix_doing_well_1.php

    Abraham is probably still potentially curable. However, his odds of actually achieving that cure would almost certainly be much, much better with conventional chemotherapy than with radiation therapy plus a poorly defined and unproven “immunotherapy” protocol….The problem is, in relapsed Hodgkins disease, without chemotherapy to clean up the microscopic deposits of tumor cells elsewhere in the body, the cancer will almost certainly recur. Remember, years ago, early stage Hodgkin’s disease was often treated only with radiation alone, and the results were not bad. They weren’t as good as they are now, but survivors were fairly common. Radiation alone is very unlikely cure advanced stage relapsed Hodgkin’s disease, but it can be excellent palliation.,,,,Besides, why on earth should physicians have the “right” to provide treatments for which there is no evidence of efficacy from well-designed clinical trials? We physicians don’t have a “right” to provide any treatment to patients. Being a physician is a privilege, not a right, and we are granted this amazing privilege of treating patients based on demonstrated competence and commitment to provide only treatments for which there is good scientific and clinical evidence of efficacy. At best, treatments without adequate evidence for efficacy should be considered as strictly experimental, to be given only under the auspices of a well-designed, IRB-approved clinical trial with careful informed consent. At worst, such treatments can be quackery. I don’t know under which category Dr. Smith’s treatments fall, but he has no inherent “right” to provide them if he cannot produce scientifically compelling evidence that they are efficacious. ”

    Dear Orac:

    You like the other doctors out there thought Katie should also go through radiation treatments yet here you say “Radiation alone is very unlikely cure advanced stage relapsed Hodgkin’s disease, but it can be excellent palliation.”

    Even though every other doctor recommended radiation for Katie, M.D. Anderson decided to try some more chemotherapy. When she went in to M.D. Anderson she was very healthy and her body was fighting off the cancer and had a 90%+ chance of survival. When she came out of M. D. Anderson she had a 20% chance of survival. When she left all they offered the parents was pallitation care. Why?

    You farther state above that “Besides, why on earth should physicians have the “right” to provide treatments for which there is no evidence of efficacy from well-designed clinical trials? Being a physician is a privilege, not a right, and we are granted this amazing privilege of treating patients based on demonstrated competence and commitment to provide only treatments for which there is good scientific and clinical evidence of efficacy.”

    M. D. Anderson provided a treatment to Katie for which there was no evidence of efficacy from well desighned clinical trials. There was no scientific and clinical evidence of efficacy for these drugs. These drugs were being first tested in a phase I clinical trial which allowed for only 2 rounds of treatments. They hadn’t been evalualted for safety or toxicity. Now understand this, Katie wasn’t under that trial, and M.D. used 4 rounds of this chemotherapy on Katie. The chemotherapy would also render Katie sterile. This was strictly experimental and there was no imformed consent to the parents or to Katie. CPS had custody and signed the consent forms. So would you use the following statement here in reference to M.D. Anderson, who can do no wrong… “At worst, such treatments can be quackery. I don’t know under which category Dr. Smith’s (M.D. Anderson’s) treatments fall, but he has no inherent “right” to provide them if he cannot produce scientifically compelling evidence that they are efficacious.

    M. D. Anderson went in to get new tissue samples before treating Katie. They were asked to get an assay done to see which chemotherapy drugs would be effective. There are several companies that provide this service, one of which is Rational Therapeutics in California. They provide laboraory analyis of cancer cells to determine the best chemotherapy drug combination for a patient. They would not do this even though the parents offered to pay for it. The test cost like $2500 and chemotherapy cost $100,000 plus. M. D. Anderson took a shot in the dark with experimental drugs. Katie lost and lost big time. M.D. even removed Katie’s thymus gland which makes the cells which fight off cancer and regulates all of the immune system. When the parents asked the doctor why she removed it she said ” She didn’t need it!!” So how can her body recover? And the parents are left to try to fix their errors and damages and will be blamed by people like you if Katie dies for not following with proven conventional medicine.

  10. #10 MW
    January 29, 2007

    Orac you miss the whole point when you say: “This story also reinforces in my mind what a waste it was that Katie’s best chance for a cure when her cancer was first treated was squandered in favor of ineffective “alternative” therapies.”

    Did you forget: Katie was treated immediately with conventional therapy. Katie had 4 rounds of conventional chemotherapy at Driscoll Children’s hospital and a negative PET scan after that. Katie was sent to M. D. Anderson to do the Radiation treatments. They didn’t do it.

    Katie got treatment for her cancer from the finest cancer treatment center in the world: M. D. Anderson for over 5 months after that. She has been through the finest conventional therapy available and It was ineffective. Conventional treatment was not only ineffective but it took her survival chances down to 20% by M. D. Anderson’s own doctor’s admission. Only after that did the parents seek alternative therapy.

    I don’t think that she is protraying her own death in the story. I think what she is saying in her story is that she has been there and seen conventional cancer therapy and has seen the death that results.

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