One of the main issues that I've written about quite a bit is the issue of what the state should have the power to do when a child has cancer or another life-threatening disease and the parents choose quackery over scientific medicine when the disease is potentially (or even highly) treatable or curable with standard treatment. Most of the time, this has come in the context of patients like Abraham Cherrix, who, with his parents support chose the quackery that is the Hoxsey therapy over chemotherapy, or Katie Wernecke, whose parents chose high dose vitamin C and other woo, over effective anticancer therapy. In this case, Abraham's doing pretty well thus far, thanks to his willingness to accept low dose radiation therapy as part of his "alternative" therapy regimen, while when last I checked Katie was not doing well at all, and I now wonder if she is even still alive anymore. (I do know that a year ago her parents were suing the State of Texas for trying to save her life.) I also tend to write about cases where a family's religious beliefs lead them to favor prayer over medicine and thereby deny their children life-saving treatment, letting them die in most unpleasant ways. Such cases disturb me more than any others.
This case has nothing to do with quackery or extreme religious beliefs, but it brings up the same issues. It's also an instructive comparison to cases in which religion or faith in "alternative" medicine leads a parent to rely on prayer or quackery instead of scientific medicine. In that it may even be more disturbing in a way than the cases mentioned above:
SALEM -- A mother has been charged with failing to give her 8-year-old son his cancer medication, a decision prosecutors say caused the boy's cancer to return in an untreatable form.Because of Kristen Anne LaBrie's failure to medicate her child, "in all likelihood, Jeremy Fraser will not see his ninth birthday," prosecutor Kate MacDougall said during LaBrie's arraignment yesterday in Salem District Court.
LaBrie, 36, who moved recently from Salem to Beverly, pleaded not guilty to reckless child endangerment. She refused comment as she left court with her lawyer.
The boy's father, Eric Fraser, who now has full custody of his son, said he is outraged not only about what happened to his son, but that LaBrie was able to walk out of court yesterday without posting any bail.
"I'm pretty disgusted about the whole justice (system) and DSS," Fraser said. "Now my son's going to die."
Jeremy was diagnosed with non-Hodgkin's lymphoma in 2006. As I've mentioned before, lymphomas are among the most treatable of childhood cancers, and assuming the police report is correct oncologists estimated Jeremy's chances of survival at the time of diagnosis to be in the range of 85-90%. Jeremy underwent initial chemotherapy and had a good response; the drugs drove his tumor into remission.
To understand why his mother's not given Jeremy the proper medications, a little bit about the treatment of lymphoma needs to be explained. When lymphoma is diagnosed, there are usually three main phases to its treatment, the induction phase, the consolidation phase, and then the maintenance phase. The induction phase, as you might imagine, is the initial shot at the tumor with chemotherapy. That's where oncologists usually hit the tumor hard and heavy with big gun chemotherapy in order to drive it into remission. If there's one thing about cancer, it's that the first shot at it is almost always the best shot at curing it. Once the tumor is in remission, however, it's known that there is a very high rate of recurrence without additional treatment, and once a recurrence occurs the odds of driving the tumor into remission again fall dramatically, and long term survival follows it, plunging to the 10-20% range.
That's why chemotherapy regimens were developed that included additional phases, and the consolidation phase is additional chemotherapy designed to sustain a remission. Consolidation is often used for the treatment of leukemias. After that, there is maintenance chemotherapy, which is lower dose chemotherapy given over a long period of time to assist in prolonging a remission. Because Jeremy was apparently on maintenance chemotherapy, I'm guessing that he probably had lymphoblastic lymphoma, which is usually treated with a full course of induction, consolidation, and maintenance chemotherapy, while nonlymphoblastic lymphoma usually does better with a shorter, more intense pulsed therapy. For localized lymphoblastic lymphoma, prolonged disease-free survival is around 60% without maintenance chemotherapy but rises to 90% with it. Reading between the lines, I'm guessing that Jeremy was probably on maintenance methotrexate, which is a drug that can be taken in oral form. He may have also been receiving what's known as "CNS prophylaxis." Because lymphoma can relapse in the central nervous system, one strategy to prevent that is to give periodic doses of intrathecal methotrexate. (Intrathecal means using a lumbar puncture to introduce the drug right into the cerebrospinal fluid.) Reading between the lines again, I'm guessing that the missed appointments were for administering intrathecal chemotherapy, probably mixed with appointments for routine checkups and blood work, possibly with some additional IV chemotherapy:
According to the police report by Salem detectives Peter Baglioni and Lt. Thomas Griffin, Jeremy was first diagnosed with non-Hodgkin's lymphoma in 2006. The child underwent a five-phase regimen of chemotherapy, including some drugs that were supposed to be given to him at home by his mother.
The detectives said LaBrie had canceled at least a dozen appointments for chemotherapy treatments and had failed to pick up the medications from a pharmacy.
"Due to Ms. LaBrie's failure to provide Jeremy with lifesaving cancer medication, his cancer has returned," the detectives wrote.
Fraser said his ex-wife picked up Jeremy's medication for about a month after he came home from the hospital. Then she just stopped.
Jeremy didn't receive anywhere near his full doses of maintenance chemotherapy, and so his lymphoma recurred, putting him in the group with only a 10%-20% chance of survival. Given that his oncologist says he only has a 10% chance, I'm inferring that Jeremy's recurrence is bad. My guess is that it's either widespread or in the CNS, either of which portend a poor prognosis. The mother's neglect will, with 90% certainty, kill her child. In actions, she is no better than the "alternative medicine" cultists or religious loons who sacrifice their children to their beliefs. When Jeremy dies, it's 90% certain it was because of her neglect. (I'm in a generous mood and granting her the 10% chance that Jeremy would have died even if treated completely according to the standard of care.)
But why did she do it?
There are two factors to consider. First, she and her husband were supposedly involved in a very bitter divorce. On the other hand, it was a physician who reported her to Child Protective Services:
Because of ongoing disputes with his ex-wife and her boyfriend, Fraser said, he cut off contact with her and with his son for some months. Then he got a call from LaBrie's sister, who told him Jeremy was back in the hospital and things didn't look good.
Fraser, a full-time UPS delivery driver, was on the road delivering packages a few weeks later when his son's doctor called."The doctor said, 'You need to pull over,'" Fraser said.
The doctors and a DSS worker "said Kristen basically stopped giving him his medicine," Fraser said. "She missed four IV chemo appointments and rescheduled 13 of them."
"It comes out to about a year that she didn't continue with the treatment," Fraser said. "They basically said if Jeremy got his at-home chemo he would not have relapsed. The doctor was very shocked that he was back in there so quickly."
Then the doctor told him they couldn't let Jeremy go home with LaBrie. "It's either you or foster care," Fraser recalled being told. The choice was clear.
There's one other thing: Jeremy is autistic.
Could it be that the combination of divorce, Jeremy's autism, and other factors led to Kristen Ann LeBrie's wanting, either consciously or unconsciously, to be rid of Jeremy, to see him dead? it's nothing more than speculation, but it's not entirely unreasonable speculation. Add to that a desire to hurt her husband, who appears to truly love his son, and who knows? I also don't find the father entirely blameless here. Whatever the circumstances of his divorce, he let himself be kept away from his son. He may have had no choice, or he may have let it happen. It's not clear which is closer to the truth, and if the divorce was truly ugly his wife may have made it virtually impossible for him to visit his son. It may not have made a difference, anyway.
Whatever the case, it's entirely appropriate that charges be brought against the mother. What's disturbing is that there was not a better mechanism for detecting earlier that Jeremy wasn't getting all of his chemotherapy drugs, while there was still time to correct the situation and take action earlier. What's even more disturbing is the likelihood that, if Kristin Ann LeBrie were a religious extremist who refused chemotherapy for her child in favor of prayer or an "alternative medicine" cultist who thinks that some concoction based on a paste from a plant that some guy in the 1800's claimed to cure a horse's cancer would be more likely to cure her child than chemotherapy, the law would likely indulge her, thanks to laws that exclude religion-inspired neglect from child-neglect laws or that give a parent essentially unlimited rights to choose quackery. From my perspective, failing to provide a child with life-saving treatment is gross negligence, whatever the reason for it. From my perspective, whatever the reason, woo, religion, personal difficulties, or spite, a parent may have a right to make herself a martyr, but she does not have the right to make her child into one.
I know that there's no mention of this at all, but could money have been an issue? At the very least, a factor that played into everything else? Because if she weren't insured, getting all the treatment might have been incredibly costly - and if it were a choice between trying to keep an autistic child alive (with a %10 failure rate) and spend all your savings trying to do it, that might have been a stronger reason for her. Not a good reason, but it sits better with me than "meh, I don't really feel like driving him to chemo today..."
Grimalkin wondered about money and insurance. The kid's father works for United Parcel Service, which provides excellent health insurance to their employees and their families.
No, it is not about the money or insurance.
I will guess this boils down to an attempt to save money. She applied the chemotherapy until her son appeared to be healthy - and then stopped, on the grounds that she could not afford it.
That's what my mother did with every prescription any of her children ever got. If the child appeared to be well, the prescription was not renewed, and no further doctor's visits would take place. (But none of my mother's children required anything as expensive as chemotherapy.)
The kid's father works for United Parcel Service, which provides excellent health insurance to their employees and their families.
However, the father was involved in a divorce described as "bitter" and was not only non-custodial but had actually had no contact whatsoever with his son for several months. I doubt that he allowed the child to remain on his insurance. Orac seems to think that the father cares about the child, but I seriously doubt he gives a sh!t. He stayed away, apparently voluntarily until he could take the kid and look like a martyr. If the mother were so unwilling to take care of the kid that she was actually trying to kill him and the father cared, why didn't he step in and take primary custody?
Be that all as it may or may not be, I suspect that the reason that LaBrie didn't continue the appointments and chemotherapy is simply because they were expensive and the child appeared to be well. She probably thought that there was no need to continue to give treatments that were probably pretty hard to get the kid to tolerate (no child likes needles or medicine and it'd be hard to explain to an autistic child why he had to do it...especially if you weren't so convinced that it was helping) and may have been the household's single largest expense, when the child was apparently lymphoma free. People pull this stunt all the time with antibiotics: taking it until they feel better then stopping--often leading to a recurrence with resistant bacteria. Why should chemotherapy be any different?
In short, based on the available data, I don't think that one can differentiate between malice (conscious or subconscious) and ignorance. But the results are disasterous, either way.
I can't even articulate the rage I feel.
That this woman did not even have to post bail after she threw away the life of her son...
That the child's father would simply walk away from his own son...
I can not contemplate the stupidity, inhumanity and utter selfishness that led to this series of events.
Money was obviously *not* the issue here. That father had insurance that covered the treatments for his son, as others have pointed out. Even if that were not the case, that's no excuse. Low and no income families seek and obtain treatment for their sick children every day of the year in the United States.
The whole thing is disgusting. Absolutely disgusting.
I can not believe that people are actually trying to DEFEND this woman's actions.
Honestly, how stupid do you have to be to think you know more than the oncologists who are treating your own flesh and blood? How utterly blind to reason must you be to think that it offers some type of "excuse" for your behavior?
How far up your ass does your head have to be for you to think that there exists an excuse that would be enough to pardon such actions?
"Oh, I didn't know that not giving my child life-saving medical treatment would hurt him, honest I didn't!"
....and
"I was WAY too PROUD to bother trying to seek alternate avenues of obtaining such treatment because I couldn't afford it, even though I could have gone to any one of thousands of agencies that would have helped me continue his life-saving treatment. I'm really the vicitm here!"
Geez.
Ugh. Again I say: Disgusting. This apparent love of turning stupid, selfish, willfully ignorant people who commit heinous, destructive acts into victims needs to stop. They're not victims... In this case, they're the murderers of a young boy.
You can get more on this story here (I know the Boston Herald is an awful rag but):
http://www.bostonherald.com/news/regional/general/view.bg?articleid=110…
The mother's family insist she did not miss appointments and place blame on the father. However she was reported to DSS partly because she missed appointments. Seems to be plenty of blame to go around.
However, a claim of neglect/abuse can be lodged at any time. The mechanism is there but there is a reliance on those providing service to families in some way (schools, physicans, psychologists, social workers, etc.) to report incidents. One issue that should be addressed is that there may be a need to provide training (and annual refreshers) on reporting of neglect/abuse to physicians treating children. In schools, this is mandatory but the agents in this case were the physicians treating the child. I don't want to seem to be pointing a finger because the family is responsible above and beyond anyone else but perhaps they should have reported the mother long before they did.
I hope I do not live to see the day in the USA when the government can command-at-large any treatment. Although there are (historical) grey areas - AgNO3 in the eyes of the newborn - superceding personal choice - which includes the choice that may in the eyes of others be wrong - would be the greater wrong.
I remain amazed at how ignorant people are of the rich history of the consequences in which authorities seemingly "doing the right thing" turning out to be doing exactly the wrong thing. Mandated immunizations are one thing - that's protection of the group as a group. Let the decisionmaking that applies to a specific individual remain with the individual (or his legal guardian).
The principle sounds good. The reality is terrible. The problem is where the lines get drawn. In the game in which the players are the individual and the government, freedom is a zero sum game. What the government takes is taken directly away from the individual. The cure is far, far worse than the disease.
Honestly, how stupid do you have to be to think you know more than the oncologists who are treating your own flesh and blood?
As Dianne said, pretty commonly stupid. People do it all the time with life-saving medication, never mind just the usual antibiotics thing. An ex of mine's mother was a nurse who worked with XDRTB relapse cases up in Repulse Bay, since unless they were forcibly confined to the hospital and made to take their meds, people quite often quit as soon as they started feeling better, usually leading to their winding up in a hospital for months (and possibly dying), and possibly an outbreak in the local communities. A guy who's probably pretty similar in outlook to LaBrie, who wound up failing upward into running the town water supply for Walkerton, ON, simply stopped putting chlorine in the wells and pipes because he didn't understand why it needed to be done. Nine people died and two thousand people got sick from the resulting E. coli outbreak.
I don't have sound on this machine at work, but chances are pretty good that LaBrie speaks like a not-particularly-bright high school dropout. I think what we're seeing here is the Dunning-Kruger Effect in pernicious action.
Out of curiosity - why the massive drop rate in survivability?
Does the cancer metastatize, does the cancer develop a resistance to the chemo, or is it because you kill the 'big' tumor it ceases supressing the growth of the little ones.
Dianne,
No. In all states that I'm aware of the father maintaining insurance for any children is a mandatory part of any decree. And the state will make sure that the employer makes this clear to the father in question. Simply put it isn't his choice. I'll leave the rest of your post alone other than to say unless you've known a father cut off from his children by factors beyond his control speculation of that sort and blaming him just because he happens to be male really isn't helpful.
This is sad case. Money, superstitions, autism, marital stress, custody dispute, maybe insurance and medical cost. There are so many psychosocial factors at play, it's impossible for an outside observer to create an informed opinion about fault.
I commend Orac for discussing such ethical concerns in such detail. Many forums would gloss over all the niggling details, but even with such an indepth story, I think it's still hard to wrap my brain around this issue.
Assuming Orac's hypotheticals are correct, there is no question this kid would have been better off with the therapy-- Methotrexate is relatively benign as far as side effects and cost (intrathecal a bit more pricey).
But I have to admit that I have to pause at the gov't directing medical care for dependent minors of legally competent parents. This is a huge responsibility for the courts to accept in my name, and as a citizen of this nation I'm not sure I'm ready for that liability. Call me a pansy, but the potential unintended consequences of such policy can be remarkable.
I realize that the courts are careful and take these matters seriously, but I do pause at the prospect at this intervention. Now if the mother had been declared incompetent, that would be another matter and the father could have been granted custody to make decisions.
It somewhat amazes me that with all the millions of kids and the lack of sophistication of the vast numbers of parents, that this type of controversy isn't more rampant. Kids' well-being is affected everyday in many small and large ways based on the quality of choices made my their parents. This is merely an extreme example. (And the hypotheticals by Orac-- while probably accurate-- are still not corroborated.)
One small item: Orac gave the stat that the mother was "90% responsible" for the kid's death. Technically, it's only 81% since 10% of these kids would have died regardless of treatment, and the kid now has a 90% risk of death.
This one case is not nearly as bad as you quackbuster jerks trying to lie to us about chelation and Lupron. You should all be brought up on charges of medical fraud.
For those with hesitation about mandating treatment for sick kids, does a parent have a right to kill or physically harm their children? Failure to treat a child is mortally harming a child. It's not a gray area. The child is powerless to do anything. He can't seek out his own treatment without parental consent let alone pay for it. Therefore, when a parent fails in their obligations to the child, it is the responsibility of the government to make decisions/take actions in the best interest of the child. That is why the government removes kids from abusive households.
"My guess is that it's either widespread or in the CNS, either of which portend a poor prognosis."
I read that his relapse wasn't Lymphoma but has now become Leukemia. Is that common for this form of Lymphoma? Does that change the treatment protocol?
And it seems that some fault may also lie with MA DSS. Turns out the parents had been investigated 4 times by DSS.
And don't forget good old-fashioned rivers in Egypt. Denial kills many people.
I agree completely with the comment by Terry above -- allowing the government that much control over people's right to parent is inviting the State to make all sorts of decisions over what is "good parenting" and "bad parenting" at a level that no one would appreciate. Given the oft-cited statistics on the level of religious credulity in the U.S., how many on this blog would feel comfortable allowing their "neighbors" to decide whether or not mandatory bible study is "good" parenting?
I see this differently than a case in which both parents of a child determine to reject established medicine in favor of their own beliefs (religious or otherwise). In those cases it is sad for the child, but I would argue is simply one of the hazards of living in a society that values personal choice.
The instant case, however, is a different kettle of fish because here neither parent/guardian declined treatment on religious/moral grounds. I think that, having gone down the path of treating the child, the mother can then be held liable for neglecting the treatment of the child.
The article that BA linked seems to blame it on the cost of driving from Salem to Boston for the appointments. (They also claim dad wasn't making his child support payments on time, which seems unlikely - don't all states have it automatically withheld from paychecks these days?)
With the rising cost of gas, I guess I can understand that it could be hard to find this money. But that's why you ask for assistance and help. Aside from public assistance (which might outright pay for non-emergency transportation as part of the treatment), I would think various charities would help out. Even going to the press and telling the story of this poor kid with autism AND lymphoma, who needs this treatment to make sure he doesn't die from cancer . . . .
It seems to me that if the mom really couldn't afford to take her child to the appointments, or that dad had tried to keep his son from being covered by insurance, that the mom would be saying, "It's my ex-husband's fault! I asked him for gas money and he said no. He pulled our son from his insurance plan!"
I would guess that she had devalued his life deciding that it wasn't worth all the work to save him (perhaps including the work of asking friends or family for the gas money) because he was autistic. And maybe she knew she could hurt his father by saying, "If you had been a good husband and father this wouldn't have happened."
I don't believe she could claim that she didn't know that the kid needed to be on the meds long term. In my experience, doctors make these kinds of points abundantly clear. "Make sure you take all the prescription." "If you don't do X then Z will happen."
It seems like a very complicated situation to me, and that is enough to make me think that judging the Mom to be solely at fault is a mistake.
If her son dies then she'll have to live with that, as will his father. Neither one appears to have fully stepped up to the plate in caring for their child.
About the brightest spot I can see here is that at least she wasn't claiming that some sham cure was the real answer. It seems more about normal stupidity, ignorance, and self-serving rationalizations than anything else.
Given that this boy is autistic and given the kind of bizarre talk that circulates around autism in parent groups, it would be amazing if the mom wasn't trying homeopathy, coffee enemas or something similar to treat the boy. Maybe she didn't, but it would be amazing if she hadn't bought into the vaccine nonsense given that she seems to have trashed the boy's life (devaluing the lives of autistic people is a big part of "biomed"... see the intro to Jenny McCarthy's autism book by Dr. Jerry Kartzinel for an example) and given that she seems to have rejected the "mainstream" (big pharma) therapy for him.
I know Rx costs are higher in the US than they are in Canada, but I doubt it was the cost that was a factor - at least not if he was on oral methotrexate. I take that as part of my arthritis regimen (admittedly in lower doses) but it's quite inexpensive.
I'm voting for ignorant idiot with sociopathic tendencies myself.
CanadianChick said "I'm voting for ignorant idiot with sociopathic tendencies myself."
I'm voting with you on that too. Especially since even in a contentious divorce the child woould still be covered under the dad's health insurance (or a judge would have been called sooner, going on the experience of a couple of people I know who had those kinds of divorces... including the neighbor whose lawyer ex-husband was told by a judge to make sure their daughter was attending a school and to stop being stupid about his support requirements. He was one of two lawyer ex-husbands I knew of that required a seperate set of soccer gear for each household --- living as a soccer family we got to know lots of interesting families).
I saw this one last night.
As far as I'm concerned this is criminal negligence.
This woman does not even have the veil of religion or "alternative medicine" to hide behind.
In all states that I'm aware of the father maintaining insurance for any children is a mandatory part of any decree.
In principle, yes. But only if caught. This is the same man who stopped making child support payments and originally only acknowledged the child when forced to by a lawsuit. He was probably supposed to make insurance payments but let them lapse with the child support. Also the doctor calling him is quoted as saying, "It's you or foster care." That doesn't sound like something one would say to a father who is eager to get access to his son after being kept away unwillingly by the kid's psycho mother. Sorry, I'm not buying his "oh, I'm such an innnocent martyr" routine.
I read that his relapse wasn't Lymphoma but has now become Leukemia. Is that common for this form of Lymphoma? Does that change the treatment protocol?
My guess is Burkitt's lymphoma (or similar high grade lymphoma) now entering a leukemic phase and not much but it's a crappy form of the disease to have. Blasts in the blood is practically never good.
they should have opted for mainstream treatment instead of alternative medicine.
Jesus Christ, so everything is about money? I'm lucky to live in a country with free healthcare, so perhaps that mentality is more common over there, but that seems like a hard pill to swallow.
This case actively screams at me of a woman who was trying to protect her child from distress. A lumbar puncture is not a trivial experience for anyone, let alone a child. Now factor in that this child was autistic, could quite easily have had major problems with the manhandling involved in the procedure before we even get to the being stabbed in the back with a huge needle part, and you have potentially one horrifically distressed child. I know parents who get torn up over giving their kids insulin shots, this is likely to be several orders of magnitude worse. A neurotypical child would develop a strong aversion to that kind of regimen, an autistic child (especially one whose home life is already going through the trauma of a divorce) is probably not going to fare so well.
It's a terribly, terribly sad case, but for Christ sake, take a moment to think that she might have been thinking about the wellbeing of her child in the here and now rather than writing her off as a penny-pinching hubris-laden vindictive cow. Yes, perhaps risking the childs future for the here and now might still be unforgivable, but I know a good few mothers who would make that call.
Confused, if she traded off the child's /survival/ for his immediate comfort (a whole twelve times a year), then she is a blazing idiot deserving of all the scorn we can muster.
And that's allowing the best possible interpretation of events. I'm not inclined to be that generous; in my experience, physicians usually don't beat around the bush with the whole "do this or your kid dies" routine. Certainly not the sort of physicians who have to resort to contacting DSS.
But, hell, if she chose to let her kid die rather than make him cry and shake twelve times a year, then certainly she's not a penny-pinching hubris-laden vindictive cow. She's a cowardly penny-pinching hubris-laden vindictive cow.
I am pro-prison reform, but this [derogatory expletive] needs to rot in jail and never see her kid again except for supervised visits.
Cultural normativity goes out the door when a child is facing a life threatening illness. Especially one that is so treatable.
I will bring the torches if someone else will bring the pitchforks.
@ Terry & Tobias:
Great. Huzzah for parental rights. Boo to government intercession. Now, who's going to look out for the rights of the kids? They can't demand treatment--it has to be signed-off on by the parents or guardians. They certainly can't pay for treatment--parents or guardians, again. How does an autistic child, of uncertain ability to communicate say, "Geez, I'd really, really like to live, y'know?"
I will wholeheartedly agree with you that adults of sound mind have every damn right in the books to be treated as they wish or not. If someone wants to play russian roulette with their life, fine by me; that's their right. As far as I'm concerned, their right to gamble with a life ends right exactly at the border of their own life. They don't have the right to gamble with someone else's life, whether it be mine, their neighbor's or their kid's.