It was just last week that I was made aware of the sad news that Katie Wernecke, the 14-year-old girl with Hodgkin’s lymphoma whose parents’ battle to reject radiation therapy and additional chemotherapy made national news in 2005 and who ultimately went for high dose vitamin C therapy at an altie clinic in Kansas, had relapsed. (Even now, altie vultures are advertising their wares in the comments of the post in which Katie’s father announced her relapse, and chastising a lone MD who posted a comment begging the family to try conventional medicine while there’s still a chance.) As regular readers of this blog know, there is another case of a youth who made the same sort of decision, albeit at an older age where it is less clear whether he is close enough to adulthood to make his own medical decisions, a case that is often mentioned in the same article (or even the same breath) when the case of Katie Wernecke is discussed. The name of the young man at the heart of that case is Starchild Abraham Cherrix, and I’ve blogged about him before.
Now, a mere week after it was announced that Katie Wernecke’s cancer had returned and spread, it turns out that Starchild Abraham Cherrix’s cancer has also spread:
Abraham Cherrix, the 16-year-old Chincoteague boy who fought in court for the right to seek alternative treatment for his Hodgkin’s disease, will require more radiation treatment to treat his condition.
Rose Cherrix, the teen’s mother, said Friday that Abraham’s most recent scans and blood tests show he has swollen lymph nodes in his armpit area, which his doctor advises more radiation to treat.
The swollen lymph nodes could indicate active cancer cells.
Rose Cherrix said the tumors in Abraham’s neck and near his windpipe, however, have not grown since he left Mississippi, where he received low-dose, targeted radiation treatment this fall from Dr. Arnold Smith, a radiation oncologist.
The tumors had shrunk from the time Abraham started treatment in Mississippi in September to when he left in October.
Rose Cherrix said Smith reviewed court-ordered scans this week that Abraham received in December at Sentara Careplex Hospital in Hampton.
He recommended he return to his Mississippi clinic for further assessment and more widespread radiation treatment.
Rose Cherrix said she plans to take him as soon as possible, perhaps within a week.
She expressed hope, however, that she might be able to find a radiation oncologist locally to continue treatment that Smith orders.
Sadly, this is not unexpected. Indeed, I predicted that the radiation would only be likely to be useful for palliation, shrinking the tumors around Abraham’s windpipe to prevent the need for a tracheostomy (not that it was a particularly difficult predictiion to make, although I am surprised that Abraham relapsed this fast after finishing his radiation three months ago). Worse, in pursuing quackery, the family appears to be bankrupting itself and tearing itself apart:
Sharon Smith, no relation to the doctor, is a Chesapeake woman who has been helping the Cherrix family make legal and medical arrangements.
She said the family doesn’t want Abraham to stay in Mississippi for treatment because the cost would be too great.
She also said the Cherrix parents have separated because of stress the family has endured throughout the past year, so a long stay in Mississippi would create a hardship for the family.
The Cherrixes have four younger children besides Abraham.
This makes me wonder if perhaps Abraham’s father has lost faith in Dr. Smith’s dubious immunotherapy or can’t stand exhausting the family resources pursuing treatments that are clearly not working. That’s pure speculation, of course, but Abraham appears to be remaining with his mother Rose, who remains a true believer:
“Even though it hurts to know he has enlarged lymph nodes, at the same time I feel confident in Dr. Smith,” Rose Cherrix said. “I feel confident that what Abraham is dealing with now can be taken care of.”
More radiation my shrink the tumors for a while, but without chemotherapy, Abraham’s long term prospects for survival are grim indeed. He had what I in my admittedly imperfect knowledge estimated to be a slightly better than 50-50 chance of being cured with conventional chemotherapy and radiation, and he threw it away in pursuit of the Hoxsey quackery and then of low dose radiation therapy (an appropriate treatment, just probably not at a high enough dose combined with an “immunotherapy” that has no convincing clinical evidence of efficacy. Even if he accepts chemotherapy again, he’s almost certainly decreased his odds of survival, and if he doesn’t accept chemotherapy again he will probably, like Katie, not see 2008.
And, of course, certain legislators can’t resist using the Cherrix case for political advantage to make bad law:
Abraham’s case led a local legislator, Del. John Welch III, R-Virginia Beach, to sponsor a bill called “Abraham’s law.”
The bill, which Welch plans to introduce Tuesday, proposes that a decision by parents to refuse a particular treatment for a child with a life-threatening condition should not be considered medical neglect so long as the decision is made jointly by the parents and a mature child.
The family also has to have considered the treatment options available, and believe in good faith that the decision is in the child’s best interest.
I’ve already explained why this proposed law is nothing more than cynical political grandstanding of the most vile sort that, at best will have a pernicious effect and at best no effect at all; so I won’t repeat myself. I’m more interested in considering the question: Will you hear about this turn of events from alties who previously gloated when Cherrix won his court case? Probably not, or if you do they will predictably blame the delay of the court case that prevented Abraham from pursuing his desired woo. Perhaps what infuriates me the most are pontifications like this:
My position from the summer is also unchanged. Abraham and his family have the right to decide how to deal with this horrible card that they’ve been dealt, and the state has no business getting involved. Have they paid a price for their decision? Perhaps, but, quite honestly, there is no guarantee that things would have been any different if Abraham had undergone traditional chemotherapy.
Even though I’m sympathetic to the view that the state should not interfere with family medical decisions except under extreme circumstances and indeed was very conflicted when discussing whether the government should try to compel Abraham to accept chemotherapy, the above statement has to be one of the more idiotic things I’ve yet seen written about the Cherrix case. Perhaps the Cherrixes have paid a price for their decision? There’s no perhaps about it! Abraham and his family threw away Abraham’s best chance at survival when they decided to pursue quackery rather than evidence-based medicine. In the process they sank who knows how much money into ineffective therapies, destroying the family finances and probably Jay and Rose Cherrix’s marriage in the process. Even though Abraham will now accept radiation therapy, every day he refuses to accept chemotherapy decreases his odds of ultimately surviving his cancer even further. No “guarantee” that things would have been any different? That’s like saying there’s no “guarantee” you’d get across Virginia faster if you chose to drive a car rather than a horse and buggy. True, the car might break down, fail, and thus strand you, in which case the horse and buggy would probably get you there faster, but it is far, far more likely that it will arrive at its destination many hours before the horse and buggy do. (I admit that the flaw in this analogy is that a horse and buggy will ultimately get you where you want to go; there was no chance that the Hoxsey therapy was ever going to cure Abraham. Maybe a better comparison would be a car versus hoping that a tornado will pick you up and deposit you where you want to go.) Dismissing the consequences of a seriously bad choice with an “Oh, well, it might have turned out this bad even if they had made a much better choice” is nothing more than an obvious (and pathetic) means of excusing that bad choice by someone who, I’m guessing, doesn’t want to admit that it was a bad choice. The bottom line is that Abraham’s odds would have been much, much better if he had undergone conventional therapy. Using the Hoxsey therapy, his odds of survival were in essence the same as his odds of undergoing a spontaneous remission: infinitesimally small. Adding radiation therapy, although it is good palliation, probably has only slightly improved those small odds without chemotherapy, given that other lymph node basins are now apparently involved with lymphoma.
I fear that 2007 will be the year that two unfortunate young teens will be sacrificed on the altar of alternative medicine. When Katie and Abraham ultimately die from their cancers, just don’t look for any acknowledgment that it was quackery that led to their deaths from all those who used their cases as a convenient excuse for demagoguery devoid of any consideration for the complexities of the question of when the state has a duty to step in to save children from medical neglect or what constitutes medical neglect (yes, I’m talking about you, Sean Hannity). Too, don’t expect any admission that the parents bear some responsibility for pursuing quackery over evidence-based medicine (or, in Abraham’s case, in acquiescing to his magical thinking). And especially don’t expect any acknowledgment that the alternative medicine practitioners who administered unproven and ineffective remedies like the Hoxsey therapy or high dose vitamin C to Abraham and Katie, respectively, bear a large measure of responsibility for their deaths. If it’s acknowledged at all, rather than swept under the rug, expect nothing more than a lot of blaming of “conventional” medicine and the doctors, social workers, and governments that tried to save the lives of these two doomed young people.