A number of readers have mailed me links to this story, and, yes, it is right up my alley. In reading it, I fear that it's a vision of the future for two young cancer patients who are very unlikely to survive their cancers because their parents eschewed evidence-based medicine in favor of woo, Starchild Abraham Cherrix and Katie Wernecke, both of whom had relapsed when last I discussed them. The case is one with which I had not been familiar, namely that of Noah Maxin, of Canton, OH:
CANTON No one in the courtroom nearly five years ago wanted this day to come. Not Noah Maxin's parents. Not the doctors who said Greg and Theresa Maxin were gambling with their son's life by stopping chemotherapy.
Eleven-year-old Noah Maxin's funeral is today after losing his struggle with leukemia, a fight that included the court battle his parents won for the right to decide how to treat their son's disease.
In 2002, doctors diagnosed Noah with acute lymphoblastic leukemia. Abnormal white blood cells were gathering in his bone marrow, crowding out red blood cells, platelets and healthy white cells and leaving him at risk of infection, anemia and bleeding.
Noah began a treatment plan that included a blood transfusion, drugs and other measures. The cancer went into remission.
Noah's parents stopped the chemotherapy three months into a 3-1â2-year plan favored by doctors at Akron Children's Hospital. The Maxins said they were concerned about the long-term effects of chemotherapy and wanted to treat Noah with a holistic approach that emphasized improved diet and strengthening the body's immune system. Another doctor took over his care.
Why chemotherapy regimens need to continue after the tumor has apparently gone into remission is always one of the hardest things to explain to patients or parents. There is a reason why such regimens and treatment plans are so long; it's because relapse is much more common with shorter plans. Some parents, however, don't see or understand that. Seeing only that the tumor has apparently disappeared in response to the first round of chemotherapy and thinking only of the long-term affects of chemotherapy and radiation, they may be quite resistant to further therapy. It's a phenomenon not unlike that of prematurely stopping antibiotics for an infection, just because there was clinical improvement. Not all the bacteria are gone, and the ones that remain tend to be more resistant. Similarly, in the case of a remission like Noah's, not all the tumor cells are gone, and the ones that are left tend to be resistant. The prolonged chemotherapy and other treatments are designed to completely eradicate every last tumor cell and provide that maximal chance of survival, as was testified at the original trial in which the State of Ohio tried to intervene to save Noah's life:
In the first case of its kind, attorneys with the Stark County Department of Job & Family Services took the Maxins to court, trying to force them to continue the chemotherapy.
A doctor from Akron Children's testified that Noah would have a much harder time beating the disease if it returned, with the survival rate dropping from 85 percent to about 40 percent.
Yes, it can be argued that Noah might well have died anyway, even if he had continued with conventional therapy. That is certainly true. However, by taking him off that regimen and choosing ineffective woo instead, his parents dramatically decreased Noah's chances. Sadly, the law could not protect him:
Stark County Family Court Judge David Stucki opted to throw out the complaint, saying the Maxins had the right to choose the treatment they thought best for their son.
The judge said his decision was based on the law and not the medical merits.
Of course, a judge can only decide based on the law, and apparently the law in Ohio allowed Noah's parents to choose woo. It would have helped, however, if Stucki had understood exactly what the choice was:
In his seven-page opinion, Stucki wrote: "The court declines to venture a medical opinion on the efficacy of the chosen treatment. These are not parents who refused medical treatment or who elected to take Noah to a witch doctor or shaman or (chose) some other method of treatment which is not recognized by the medical community as legitimate."
I don't know exactly what sort of woo Noah's parents chose for him, but I would argue that using naturopathy against cancer is not all that different in efficacy from the treatments that a shaman or witch doctor would provide. In any case, even though Noah was off his chemotherapy for only four months, his tumor returned. By the time his parents turned back to conventional medicine, it was apparently too late.
One aspect of this story that is rather characteristic and instructive is the number of comments after it castigating the newspaper for even publishing this story, where they argue that it only serves to cause the parents pain to remind them of this and the standard rants that parents have the "right" to choose "unconventional therapies" (i.e., quackery) even for a six year old (which is how old Noah was at the time of his diagnosis). Many of them went like this idiotic comment by Bette Iden:
No one has the right to judge these parents except the God they believe in. It was their right as his parents to deceide what, how and when he would be treated. How dare anyone second guess these parents! Nor should the courts be involved. BTW, kids do die of leukemia even with chemo! My belief is when God calls, you die, no matter what is done by man.
By such "logic," I could ask: Why bother trying to treat a child with cancer at all? After all, God obviously wanted that child to die, or else He wouldn't have given him cancer. Using chemotherapy is thus thwarting His will, isn't it? Such sentiments drive me crazy.
Another common sentiment in the comments thread is heard from Pat Taylor:
SHAME on Shane Hoover for writing the article and SHAME on The Canton Repository for allowing this story to be reported at this time. Where is your hearts????? How could anyone call Theresa and Greg's home on the day of their son's funeral and ask for a comment. I have lost so much respect for your paper. My heart goes out to this family. Until you have walked in the path of ones life you do not know how you would handle a situation. Maybe we should go back to the wisdom of the Mother of Bambi - IF YOU DON'T HAVE ANYTHING NICE TO SAY ABOUT SOMEONE -DON'T SAY SAYTHING AT ALL!!!!! JIM QUINN -Who are you to make judgement on this grieving family- YOU ARE NOT GOD- you have no right to say they made a terrible decision. SHAME ON YOU TOO!! I know Noah Maxin is in a better place now and I pray his family find some peace in their hearts knowing their precious child is not suffering anymore. May God bless his family and friends.
Although I feel great sympathy for any parents who have to bury a child lost to cancer, I find the religious posturings and justifications for the parents' decision and all the "Noah is in a better place" tripe highly offensive. Also, although it does make me queasy that the reporter tried apparently tried to talk to the parents on the day of the funeral, I understand that journalism requires that all parties in a story be contacted for interviews. I also have to disagree strenuously with the sentiment that publishing this story serves no purpose. In actuality, publishing this story serves a very important purpose. It shows that there are consequences for choosing woo over evidence-based medicine. In this case, very likely the consequence was the death of an eminently savable child. If the message sinks in to the brains of only one set of woo-loving parents, the article will have done a great service. Sadly, only one commenter, John Quinn (the commenter so castigated by Pat Taylor above), seems to understand this, and this was his comment that provoked such a violent reaction:
Reading the comments on this story shows that we need to stress an important fact. Without conventional medical care, leukemia is always fatal. Always. When Judge Stucki allowed the parents to skip chemotherapy, he was sentencing this child to death. Nobody wants the parents to suffer more than they already have, but it's important to point out that their decision to decline medical care in favor of quackery led to the death of a totally innocent child. This boy deserved better from the courts and the family services. Hopefully, this tragedy will prevent the officials involved from making the same mistake again.
Indeed. There was a small chance that Noah would have survived after only brief treatment (which is all he got before his parents turned to quackery), but it was far more likely that he would relapse, and, sadly, that's what happened.
This is disgusting. His parents ought to rot in prison for murdering their child; and the judge should join them. At the very least, he should be sacked and stripped of his qualifications for incompetence.
"The court declines to venture a medical opinion..." What a bloody cop-out. And the decision was 'a legal one, not taken with view to the merits of his treatment'. And so the trend continues for a growing body of self-referencing mental masturbation that's too gutless to enshrine evidence-based practice of any kind (medicine or otherwise) in legislation or precedent. I can't believe that the interests of the child and the merits of his treatment didn't come first.
(Shakes head in despair and stalks off in disgust.)
Fifth attempt to write something without littering your site with profanity. Oh screw it. Damn it, childhood cancer is curable! IF, that is, the kids get treated properly. This was the entirely predictible outcome and it's the fate that awaits Wernecke and Cherrix too. Dammit.
This is terribly sad and frustrating.
I'm guessing the judge had no alternative under the legal precedents. The same right to be free of government interference in family decision-making that began the line of cases leading to Roe v. Wade makes court-mandated child medical treatment against the parents' wishes an extremely rare thing. There may also be (though apparently absent here) issues of free exercise of religion, such as where there is a religious prohibition against blood transfusions.
I agree fully with your criticism of the judge's comments about this not being equivalent to witch doctoring, in the context of supposedly "venturing no opinion" about efficacy.
Don't be too hard on the parents, folks. They have been suckered by this stupid fuckwittery that is "alternative medicine", just like so many people. They're just human, and humans are thick. Which is, of course, why we need *science* - there is no other way that we can choose between effective treatments and ineffective treatments. In the UK, the law is clearly in favour of the child's best interests; in similar cases, the child would be made a ward of court, and treatment allowed to proceed. Kids are not their parents' chattels, and parents are very often unable to see what is in their child's best interests. Time for Ohio to catch up.
The reporting on this story has been spotty. The article on Yahoo yesterday stated that the cancer returned four months after stopping conventional treatment and his parents decided to continue chemotherapy. See:
http://news.yahoo.com/s/ap/20070522/ap_on_re_us/leukemia_death_1
I have to assume then, for the last 4 years, his leukemia was treated conventionally.
This will incur a lot of wrath from everyone on this post but I'm going to defend the judge. He was in really bad no win situation. Here's why. Option 1: He forces the use of Chemo the parents appeal until they find a judge who isn't willing to take the stand against woo. The new judge will rescind the court order and the altei treatment begins. The child dies due to the lack of chemo. The parents blame the judge for delaying their access to woo. Some ACLU lawyer with altie support sues like crazy. Option 2: All the parents appeals fail and the child falls into the 15% fail rate for chemo for lymphoblastic leukemia. Same ACLU lawyer same altie support same bad outcome. Option 3: He allows them to proceed with the lunatic therapy, an innocent life is lost and hopefully parents who are woo curious become woo phobic. There is of coarse the fourth option in which the Chemo works and the child lives a long healthy life which would have been the ultimate solution. The judge was also bound by legal procedures which allow a person to choose or failing that their guardian chooses for them. I don't like the way this freedom was used in this case as well as when vaccinations come up. However I still believe that a person should have the right to refuse treatment. The right of a guardian to refuse treatment for a patient not capable of making the decision (legally or mentally) is far more questionable. The level of competence of the guardian must be established. However in the case of parent-child guardianship the courts hands are tied further as the court has a much higher burden of proof to show that a parent is not competent to choose for their child.
Did the parents make a bad decision, oh without the slightest doubt. Should they pay for it, um I think they paid for their stupidity. Should we judge them, not sure. If you are told that there is a way to save your child without the horrors of chemo any parent would at least consider it. Any rational parent would look at the results for naturowoopathy as a cancer treatment and run, run far run fast. However if some naturowoopathy practitioner told you that the government was suppressing this great cure that would work and save your child and you are already a wreck you might buy it. I'm seeing a form of brain washing which uses high stress situations and sleep deprivation. Should we judge the naturowoopathy practitioner who sold this to the parents? YES we can and we should do more than that.
Actually, the child paid a far greater price for the parents' stupidity than they did.
However, I agree with you that people may be being too hard on the judge. Judges are bound by the law; they can't just make stuff up because it's right. He probably had no choice but to rule the way that he did based on the law. However, he does deserve criticism for how he worded his decision, in essence saying that the woo chosen to treat Noah was recognized as "legitimate" and comparing it unfavorably to shamans and witch doctors. If I were the judge reluctantly forced to make such a ruling because that's what the law says, I would have made it very clear that I thought the treatment being chosen by the parents was endangering the life of the child and pointed out that, although I wish I could rule otherwise and act to save the life of the child, the law compels me to rule in favor of the parents. I would have also implored the parents to change their minds.
Amentohop: I didn't mean to be hard on the parents, they're already going through about the worst thing any person can experience, but the whole situation. The whole thing is screwed up. Why is it that two presumably sane and well educated people living in a first world country with plenty of resources and an elaborate health care system could even fall for this in the first place? Something is badly screwed. Are we failing to explain the reasons for the extended treatment so badly? Is our education system so poor that people come out of it completely unable to evaluate evidence? Does the lack of regulation of "food supplements" and homeopathy mean that they get to run amok, lie, and promise the impossible, leading people to trust them when they shouldn't? All of the above?
If you want to complicate matters further, you could consider that cognitive delay and other long term problems after treatment for ALL is a legitimate concern and an area of considerable ongoing research for pedatric hematologists. So the parents weren't, in fact, negelectful or stupid to worry about a potential problem. It's just that neglecting to definitively treat the cancer while it was still treatable led to the ultimate congitive difficulty, death.
I've never said that the long term complications of chemotherapy (cognitive problems, growth delays, and secondary malignancies) aren't a concern; indeed, I've written about them before. However, if the child with cancer doesn't live long enough to be at risk for those complications, then it's all rather a moot point, isn't it? Choosing woo over chemotherapy in a case like this all but guarantees that the child won't ever suffer those long-term complications--mainly because the child won't live long enough to experience them.
Orac: I agree. Just pointing out that the treatment for childhood ALL, while effective, is not easy and it isn't crazy for a parent to want to avoid the toxic effects. So one can't dismiss this case as simply that the parents were crazy or neglectful. They had a legitimate concern but they dealt with it in the worst possible way.
The question I was trying to get at is how can we avoid having patients and patients' parents run to woo because chemotherapy is so obnoxious without lying to them (ie claiming that chemo is not dangerous or unpleasant)? The ideal answer, of course, is safer treatment protocols, but that awaits the results of further research (though improvements are occuring: consider IT chemo versus cranial XRT, for example, or chemo with zofran versus chemo without, etc.)
In the mean time, what? Be as clear as possible about the risks of stopping chemo early? Discuss why woo is a bad idea in great detail? Restrict the sale and/or advertising of woo related products? Raise the average person's understanding of evidence to the point that few will fall for the promises that woo proveyours make? Publicizing bad outcomes so that it is harder for woo advocates to claim that woo is perfectly safe? Just throwing out ideas...But I don't think that simply saying that the parents are crazy and the judge stupid (not that you or anyone here did that) won't prevent this from happening again.
Orac: I agree. Just pointing out that the treatment for childhood ALL, while effective, is not easy and it isn't crazy for a parent to want to avoid the toxic effects. So one can't dismiss this case as simply that the parents were crazy or neglectful. They had a legitimate concern but they dealt with it in the worst possible way.
The question I was trying to get at is how can we avoid having patients and patients' parents run to woo because chemotherapy is so obnoxious without lying to them (ie claiming that chemo is not dangerous or unpleasant)? The ideal answer, of course, is safer treatment protocols, but that awaits the results of further research (though improvements are occuring: consider IT chemo versus cranial XRT, for example, or chemo with zofran versus chemo without, etc.)
In the mean time, what? Be as clear as possible about the risks of stopping chemo early? Discuss why woo is a bad idea in great detail? Restrict the sale and/or advertising of woo related products? Raise the average person's understanding of evidence to the point that few will fall for the promises that woo proveyours make? Publicizing bad outcomes so that it is harder for woo advocates to claim that woo is perfectly safe? Just throwing out ideas...But I don't think that simply saying that the parents are crazy and the judge stupid (not that you or anyone here did that) won't prevent this from happening again.
85% long term survival rate after chemo, and they chose woo.
There probably are cancers that are so nasty that the survival rate even with the best treatment isn't so good, so go get the woo if it makes you happier.
But you can't argue with those statistics. Is it really the fault of schools for not teaching even the very basics of critical thinking? Or is it the fault of the woomeisters who can spin their crap in such a way as to spit out diamonds?
One thing that hasn't been mentioned thus far is that there is legal precedent for the courts displacing bad medical decisions by the parents.
In cases of a Jehovah's witness child being in danger of death if they don't get a blood transfusion, when the parents won't allow it we routinely petition the court, get a temporary guardian from the court assigned, and give the blood.
In that case we're not only going against parents wishes, but religious faith. The timelines longer on this case, but the issues are the same.
There was another option for the judge.
Perhaps they were just running out of money, and couldn't pay for more treatment.
This almost implies that if the parents were simply refusing treatment, that he could have forced them to accept treatment.
This also implies that the alternative treatment the parents sought is recognized by the medical community. So aren't they (the medical community) really to blame? (assuming there is evidence for the judge's belief that the "woo" was accepted as legitimate treatment)
Not likely. Given the child's age and the federal Medicare / Medicaid system they should have easily been able to get their lawyer (the one who worked with them at the woo trial) to get money to pay for treatment. Also the naturowoopathy practitioner can't take insurance so they would have to pay out of pocket. They also put the child back on chemo but too late the tumors had become resistant to chemo by this point (just my opinion). This is all a matter of sticking to beliefs irrespective of glaring evidence to the contrary.
As far as who paid the ultimate price for their decision, that's a matter of perspective. The child is dead which is horrible beyond word but personally given a choice of dead or living with the guilt I'm not sure if death is worse at least for me.
With regards the healthy diet, is that not what standard cancer treatment would recomend anyway ? A diet with plenty of fruit and vegatables, low in fat and salt etc ? In other words the diet we should all be having!
From a reader critical of the news story:
"Maybe we should go back to the wisdom of the Mother of Bambi - IF YOU DON'T HAVE ANYTHING NICE TO SAY ABOUT SOMEONE -DON'T SAY SAYTHING AT ALL!!!!!"
In my area I wish the wisdom of Bambi and her mom extended to not running out into the road in the path of cars.
So, these parents chose having a dead kid over having one with special needs. Why am I not sympathetic?
Because last night was my special kid's prom, and it was more special than anyone can imagine. They will never know this joy, and that is the way it should be.
They do not deserve this joy.
I think it is unfair to be tarring this family with the same brush as the Wernecke and Cheerix families.
The Maxim's briefly discontinued chemotherapy at a time when their sons cancer was in remission - they resumed standard medical care as soon as it reappeared, and continued to provide their son with the standard medical treatment for the next four years.
To claim that a brief hiatus from chemotherapy in 2003 is responsible for the death of this boy in 2007 seems a bit of a stretch. To be calling the Maxim's "stupid" and "disgusting" and claiming they should be in jail over it is simply beyond the pale.
I know how frustrating it is to see the Wernecke's and Cheerix's and other religious fanatics of this world killing their kids by not taking care of their medical needs. I grew up in one of those households, and count myself lucky to have reached adulthood.
But let's not start attacking people who haven't actually done what is so reprehensible.
I think it is unfair to be tarring this family with the same brush as the Wernecke and Cheerix families.
The Maxim's briefly discontinued chemotherapy at a time when their sons cancer was in remission - they resumed standard medical care as soon as it reappeared, and continued to provide their son with the standard medical treatment for the next four years.
To claim that a brief hiatus from chemotherapy in 2003 is responsible for the death of this boy in 2007 seems a bit of a stretch. To be calling the Maxim's "stupid" and "disgusting" and claiming they should be in jail over it is simply beyond the pale.
I know how frustrating it is to see the Wernecke's and Cheerix's and other religious fanatics of this world killing their kids by not taking care of their medical needs. I grew up in one of those households, and count myself lucky to have reached adulthood.
But let's not start attacking people who haven't actually done what is so reprehensible.
My apologies for the double post - Scienceblogs hiccuped while I was posting, and apparently I shouldn't have opted to "re-load current page" after all.
I agree that Noah's parents weren't as dense as Starchild (whose parents' brilliance could be deduced by their child's name IMO) and Katie's parents, but they still probably killed their son by choosing quackery. I'd like to know who recommended the woo (I prefer calling it b.s. myself) to these unfortunate people.
I agree that Noah's parents weren't as dense as Starchild (whose parents' brilliance could be deduced by their child's name IMO) and Katie's parents, but they still probably killed their son by choosing quackery. I'd like to know who recommended the woo (I prefer calling it b.s. myself) to these unfortunate people.
85% long term survival rate after chemo, and they chose woo.
The point is that doctors are honest about the limits of chemotherapy and do not offer 100% certainty. Practioners of woo offer certainty.
Liars like Hulda Clark and Matthias Rath are the ones that should be attacked rather than the parents that are foolish enough to fall for their false promises.
Look in to the case of Dominik Feld. Doctors gave a 20% chance of long term survival with chemotherapy. Matthias Rath promised the cure for all cancers. What do you think Dominik's parents chose?
You know what? I AM judging these people. I'm sorry they lost their son because of their poor decisions, but you know what? At least they're alive to feel a loss. Their son is DEAD. He will not grow up and get to live his own life making his own adult choices. He died from a disease with an 85% cure rate because his parents, who had the resources to know better, decided to go with the treatment that made THEM feel better, rather than their child. I will admit that it's possible that they got bad medical advice - I would guess that no one sat them down and said, "If you don't continue chemotherapy, your child will die. DIE." But still, these people made an idiotic decision and their child paid the price. People thinking of doing the same should feel that they will be judged harshly if they make such a decision, just as they would if, say, they regularly drove the car with their unbelted four-year-old jumping around in the front seat. There is a role for judgment in society.
I'm not going to write the Maxins letters or try to e-mail them. If they don't want to know what others are thinking of them, they can avoid Websites and other sources that might say something. But it's entirely possible that someone else is going to stumble on these comments who is thinking of doing with his/her child what the Maxins did with Noah, and for them I say: This is DUMB. Dumb, and selfish. If you aren't happy with your child's treatment protocol, seek a second opinion from someone with a medical degree. But don't seek an untested treatment from someone who promises you the world, or you and the Maxins could end up having way more in common than you presumably want.
The same people that are whining about the newspaper running this story are the same people that have no problem with stories that printed about so-called vaccine injury and the horrors of autism.
What a pathetic double standard.
PennyBright wrote: "The Maxim's briefly discontinued chemotherapy at a time when their sons cancer was in remission - they resumed standard medical care as soon as it reappeared..."
That's just it - the cancer never went away. "Remission" doesn't mean "cancer-free". There could be cancerous cells hidden away in some nook of the body such that they aren't revealed in the lab tests.
An awful case.
The thing is, there must be someone, somewhere, who give the parents advice that naturopathy could cure cancer. They surely didn't just decide in a vacuum.
If a doctor gave advice that a certain line of treatment was better when it was known to be worse, he'd be sued to pieces. If a car mechanic gave advice that the brake warning light could safely be ignored, he would also be liable to be dragged through the courts. So why should some woo-miester get a feww let-off here?
I'm in agreement with PennyBright on this one. If the story is accurate these parents had their kid take a relatively brief break from chemo (4 months) to try something else and then had him put back on chemo when the something else wasn't working. To conclude from that they 'killed' their son is a serious stretch.
No, Noah's parents didn't kill him, cancer did. They just made that outcome more likely by following some quack's advice.
I take no prisoners and give the parents absolutely no quarter on their culpability in the death of their child.
They CHOSE to abandone 85% successful treatment, were taken to court (that is NOT a subtle hint that their choice of treatment was stupid). They exercised their "health freedom" and murdered their kid.
I am certain that there are those who would comfort them in support of their choice of alternative treatment. I consider them criminal facilitators.
Not only is 85% not 100% but it is just a estimate that applies to a population, not to any particular patient. There is no way of knowing what this particular child's chances of beating this disease were had he followed the exact treatment regimen proposed by his original doctors or how his chances may have been affected by his parents decision to take him off chemo for a few months.
Suppose his leukemia had not returned even though he remained off chemotherapy (because that will happen rarely), would that prove or even support the notion that diet trumps chemo when it comes to treating cancer?
Two points here.
Alternative madicine is exactly the same as witch doctoring with the same benefits. The legal system should recognize this and be direct about it - not praise them for going to a witch doctor. If in fact the person treating their kid was a real doctor, he needs disbarring.
You are perhaps being a little hard on on the parents. The survival chances were 40% WITHOUT nore chemo, 85% WITH. If he happened to come withing the 40% his long term survival might be better as he had had less chemo to attack his cells. It is an appaling decision to make - the 85% is a no brainer, but people, especially those drawn to woo are hopeless optimists. To take a public example look at Bush who thought once he invaded Iraq the iraqis would welcome him and Halliburton with open arms. So such faulty optimism is not unusual. I think the death of their kid is punishment enough and I disagree with those who think the kid got the worse punishment. Death gets us all sooner or later. As soon as the kid died he stopped suffering. I suspect the parents will continue to suffer from t heir foolish dedision till the end of their lives.
I am Noah's cousin. I'm absolutely disgusted at all of you people who act like you know my cousin and what my family has been through. First of all if you are going to say something about my cousin, get your facts straight. You are all ignorant to believe that chemo cures everyone. I am also in nursing school and I have seen first hand what people go through and that chemo doesn't always work. Noah was a wonderful boy who went three years of chemo and I have honestly never seen him so tired, weak, and miserable. He was a young boy who loved his parents more than anything and his parents loved him and did everything humanly possible to save his life. If anything chemo had hurt my cousin. All of this "holistic quack" you are all referring to was that he was put on a nutritious diet that would boost his immune system (that the chemo had depleted) and if any of you know anything about chemo, it kills all of your cells, not just the bad ones. My aunt and uncle didn't take him to a witch doctor or any hokey crap like that. They were being good parents and doing what any good parent would do to save their sons life. Most of you don't know that he went to Maryland to the Cancer Institute for a MONTH to become an experimental guinea pig for cancer drugs until the drugs were so toxic that he could not continue.
My cousin loved his parents and his family and would do anything to get better; the thing was that he was selfless. Instead of being depressed about not being able to go outside and play with his friends like any normal 11 year old would do, he would make his family laugh and make beautiful works of art. But you all wouldn't know that about him would you. Newspapers make me sick. They don't tell you about what a wonderful boy he was or that he was amazingly talented or that the line to the calling hours was out the door for from 3:30-10:00 (it was supposed to end at 8:00), they just say what they want so that people like you can make more news out of nothing.
Chemo has its place but don't be so ignorant to think that man-made medicines cure everything. May I remind you that pharmaceutical companies make an astronomical amount of money on pushing medications, especially cancer drugs. My aunt and uncle are at peace with their decisions and regret nothing. No one is guaranteed their life and God had a much better plan for him. I'm going to miss Noah more than anything but I know he is in a better place.
It just makes me so incredibly sad that people like you would say these horrible things about my family when you know absolutely nothing.
I just had to point out that I don't think anyone in this conversation said Chemo would cure everyone of cancer (or that man-made drugs could cure everything). What we're talking about here are statistical numbers showing that the survival rate is so much better with Chemo (and how going off chemo for even a short period of time could be disasterous).
I am a bit curious as to why he had to be off the chemo to be on a nutritious diet. Surely such a diet could have complemented conventional medicine.
And someone please correct me if I'm wrong. I know pharmaceutical companies make a lot of money on some drugs but I always thought cancer drugs weren't one of them.
Amy - you have provided a powerful and moving account of the emothions that lie behind the decisions your family have taken. And while you are coming to terms with your grief, I wish no further ills upon you. But sadly it is also the case that your account has leant creedance to the concerns that Noahs death has caused so many.
You claim that God had a better place for Noah. If so, then why did God have Noah born into a world and time when he could have had access to medicine that would have greatly increased his chance of survival?
No - this did whas nothing to do with God's plan, this was a bad decision made by parents. It was a selfish decision, and they let blind faith act as an excuse. They could not stomach seeing their child in pain, and took their chances, throwing the dice and hoping that God would intervene. But he did not, or could not, or maybe was not even there to listen.
But whatever your faith, in my view what has happened is as a result of morally indefensible decisions.
Vlad wrote: Option 1: He forces the use of Chemo the parents appeal until they find a judge who isn't willing to take the stand against woo. The new judge will rescind the court order and the altei treatment begins. The child dies due to the lack of chemo. The parents blame the judge for delaying their access to woo. Some ACLU lawyer with altie support sues like crazy. Option 2: All the parents appeals fail and the child falls into the 15% fail rate for chemo for lymphoblastic leukemia. Same ACLU lawyer same altie support same bad outcome.
Can you cite any instances of the ACLU actually providing legal representation for woo-inclined parents? I'd honestly like to know, because I'd strenuously object if my membership dues were being wasted in such fashion. If, on the other hand, the ACLU does not involve itself in this kind of case, I'd like to know why you suggest that it does.
Orac wrote: However, he does deserve criticism for how he worded his decision, in essence saying that the woo chosen to treat Noah was recognized as "legitimate" and comparing it unfavorably to shamans and witch doctors.
Absolutely; the judge is trying to have it both ways here. Either the parents free to choose whatever course of "treatment" they desire, including but not limited to shamen, witch doctors, oungans and whatnot, or they don't. It cannot be that the government has legitimate grounds to intervene on the child's behalf in the case that the parents turn to a witch doctor, but not if they turn to a homeopath.
Orac,
If the judge really had only two possible ways to rule - sentencing a kid to death by cancer or assuming a dictator's power to ignore and re-write laws - this unacceptable choice suggests another way out. Resign from office. A courageous resignation could shake state legislators into improving the law, as well as publicizing the severity of the problem.
On the other hand, a resignation just dumps the same impossible problem on the next judge in line, and there's always the difficult question of whether you can do more good working from a strong position inside a flawed system or from a more morally pure but tactically weaker position outside the system. I don't claim the perfect wisdom needed to know which path is better, but all options should be pondered. A resignation, or a threat of resignation if the problem isn't fixed before the next child comes along, at least merits some consideration in extreme cases.
All of this "holistic quack" you are all referring to was that he was put on a nutritious diet that would boost his immune system (that the chemo had depleted) and if any of you know anything about chemo, it kills all of your cells, not just the bad ones.
I think the point is that the Doctors had results from clinical trials to support their recommendations. They were honest about the less than 100% chances of long term survival and were also honest about the side effects of chemotherapy.
What did the "holistic" practioner offer? What research did they base their recommendations on? Did they advise taking your cousin of chemotherapy?
I think it is wrong to condemn your aunt and uncle for making the choices they did. I think that some people have been too quick to pass judgement. However, I also think that the "holistic" doctor is morally responsible for consequences of the bullshit they peddle. Offering false hope and false certainty to vulnerable people is about the lowest form of deceit in the world.
"If the judge really had only two possible ways to rule - sentencing a kid to death by cancer or assuming a dictator's power to ignore and re-write laws - this unacceptable choice suggests another way out. Resign from office. A courageous resignation could shake state legislators into improving the law, as well as publicizing the severity of the problem."
A judge in Vermont had a case like that - nothing to do with woo but he refused to sentence a pedophile to jail because there were no treatment facilities available for pedophilia in jail. If he was out of jail he could get treated. The uproar was huge, venim sptit far especially by Vermonts repub governor (how did they get to him from Howie?). The final result was that the judge retired and you can now get treatment for pedophilia in jail.
Amy wrote: I'm absolutely disgusted at all of you people who act like you know my cousin and what my family has been through.
This may come as a surprise to you, but you are not the only person ever to have a family member or close friend who suffered, or even died, from some form of cancer. For example, one of my best friends died of intestinal cancer in 2000, and my father was diagnosed with CML in 2004. As a result, there are plenty of people who have undergone an experience which, if not identical, was at least similar to your own. We know chemo isn't always effective (it didn't save my friend), and even when it is, it has nasty side-effects (Gleevec hammered my dad's CML into total remission, but it hasn't left him unaffected, to put it mildly).
So, with all due commiseration for your loss, get the hell over yourself.
Respectfully
Just to get the facts straight.
When Noah relapsed after three months without treatment, he was put back into conventional care. After starting the treatment again, Noah immediately went back into remission and stayed in remission until he was 4 months shy of completing treatment. I believe they were told the risk was that he would not be able to get back into remission if he relapsed, but that was not the case for him.
The statistics of an 85% cure rate for A.L.L only follows the patients for five years after treatment is started. The patients could all relapse after 5 years and they would be considered positive outcomes towards this percentage. Noah did live out this 5-year term so by these statistics he would be a positive outcome.
No matter what the possibilities in his case could have been, he did beat the odds and go back into long term remission.
There is research out now that shows certain patients have a greater chance of relapse because of a certain gene or gene mutation present in their chromosomal make up. Based on the article link below, with current Standard Therapy that is in place for people with ALL who have this gene or gene mutation, Relapse is almost predictable and inevitable with out a change in standard protocol of treatment from day one. I believe Noah's case would fall into this category.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Retrieve&li…
Amy:
You said: You are all ignorant to believe that chemo cures everyone.
None of us is so naive to pretend that it does, nor have we ever stated so. But lack of chemotherapy in a child with A.L.L. cures nothing, and incompletely or improperly delivered chemo can be worse than useless; the same principles that drive antibiotic resistance in bacteria (which I would hope your nursing course has at least touched on) apply to cancer chemotherapy, especially for the leukaemias.
You said: Noah was a wonderful boy who went three years of chemo
This almost certainly saved his life for those three years. Prior to the advent of chemotherapy, survival times ranged from ten days to a maximum of ten months, the average being about a month (Paterson's Sick Children, 1947).
You said: All of this "holistic quack" you are all referring to was that he was put on a nutritious diet that would boost his immune system (that the chemo had depleted)
And what do you think the leukaemia was doing before he started treatment? It certainly wasn't doing his immune system any favours. I have some questions to ask, that I hope your cousin's family got the answers to. How was this diet meant to "boost" his immune system (i.e. what was the mechanism)? What measures were being applied to define success of this "boosting"? (e.g. Cell counts? Immunoglobulin levels?) Had it been tried on others, and with what results? Was treatment required to be stopped for the "boosting" to work, and if so, why? What proof was there that the diet could not be run concurrently with treatment? Were the answers to any of these questions discussed with your aunt and uncle before the diet was begun? Was the possibility of failure of the diet explained? What promises were made to your aunt and uncle by the purveyor of the diet, and how did that affect your cousin's treatment?
You said: May I remind you that pharmaceutical companies make an astronomical amount of money on pushing medications, especially cancer drugs. Yes, they do. And from those profits came (and comes) the money to research drugs like penicillins, which have saved God only knows how many lives. Or like the thyroxine which stops congenital hypothyroid patients and people who need cancer thyroidectomies becoming mentally retarded basket cases. Like insulin (without which diabetes used to be a death sentence). Like the chemo drugs which let you and your relatives and friends enjoy three years of your cousin's company, rather than thirty days or less.
I will retract my comments on the criminal culpability of your aunt and uncle. In retrospect they were almost certainly desperate people pushed to desperate lengths and vulnerable to improper suggestions. I'd still like to know (and you ought to find out) exactly what was asked of and promised to them by the alternative practitioner, and how that stacks up against what was delivered.
As an aspiring peds oncologist having done electives on pediatric oncology wards before, and its actually extremely common for parents to insist on some sort of woo or to suggest it, desparation may lead to such action, and its understandable, one can not blame the parents. I will add that in my experience most parents asking about woo just want to add something to treatment and often its "mostly harmless", however when it interferes with the mainstream treatment it was almost always immediately discontinued.
Its ironic that this speciality is being infiltrated by such wo, as it is ,to my mind, the most shinning example of the success of evidence based medicine. The past thirty years has seen a revolution in paediatric oncology, with the COG, the UKCCG, the POG etc being very successful in making ALL a very survivable condition for more than 80% of patients. It is interesting to note that a dictionary definition of leukemia from the 60's included the words "invariably fatal". Its a true testment to the power of evidence based medicine that today the outcome is generally very good.
I think the practicioners of this alternative treatment should be seriously questioned, called to account asked to give evidence that they believed they were acting in the childs best interest or out of motivation or profit.
Ultimately for me EBM, allows us to act ethically as doctors with evidence there is no faith no belief about treatment efficacy that one imposes on the patient, with EBM the doctor can stand by his position which is defensable to anyone who looks at the evidence.
As an aspiring peds oncologist having done electives on pediatric oncology wards before, and its actually extremely common for parents to insist on some sort of woo or to suggest it, desparation may lead to such action, and its understandable, one can not blame the parents. I will add that in my experience most parents asking about woo just want to add something to treatment and often its "mostly harmless", however when it interferes with the mainstream treatment it was almost always immediately discontinued.
Its ironic that this speciality is being infiltrated by such wo, as it is ,to my mind, the most shinning example of the success of evidence based medicine. The past thirty years has seen a revolution in paediatric oncology, with the COG, the UKCCG, the POG etc being very successful in making ALL a very survivable condition for more than 80% of patients. It is interesting to note that a dictionary definition of leukemia from the 60's included the words "invariably fatal". Its a true testment to the power of evidence based medicine that today the outcome is generally very good.
I think the practicioners of this alternative treatment should be seriously questioned, called to account asked to give evidence that they believed they were acting in the childs best interest or out of motivation or profit.
Ultimately for me EBM, allows us to act ethically as doctors with evidence there is no faith no belief about treatment efficacy that one imposes on the patient, with EBM the doctor can stand by his position which is defensable to anyone who looks at the evidence.
I checked this site out after reading the numerous articles about Noah Maxin. It's is surprising to hear the venom filled articles based the the moral 'scientific' high ground you all enjoy spewing. The statistics - oh yeah, the statistics say it all doesnt it. So, out of all of you, which one has had a personal experience themselves? You know, a real experience of being the parent of a child with cancer. Now, we have to make this a real experience, one with the many pages of clinical trial info to digest as fast as possible. But, be sure to include reading all the info regarding the medications and the short-term/long-term side effects real quick - pretend you didnt see that it may cause death. I'm sure a good many of have you've watched your child endure the 26 IT treatments, and definately sat there as nurses suited up in their 'special' gowns, masks, and heavy duty gloves as the lifesaving toxic poison is pumped into the body of your child for the 20th time who looks and feels like he's already dying.You place so much value on the statistics and they can be manipulated to suit your arguement, the exceptions arent given much weight,yet they represent real people. I'm sure you are well informed and really know what you are talking about from personal experience. Is that why you feel justified with all the clinical chest pounding you are doing? If you are in the medical profession, you suck big time. You just like to hear yourself talk, why dont you try the 'real experience' route and volunteer your time on the oncology floor and help real people understand the lingo get thru the real experience of trying to live. Ever think about being a patient advocate? Too radical? My child did the 39 month stint for ALL, relapsed anyhow, had a BMT with a 10% chance of survival-he made it. I chose medicine, not 'woo' and I chose faith. We made the best choice possible given the circumstances. Fortunately, it was a successful combination. Putting your trust and faith in the medical world is not an easy choice, especially with people like you at the helm. Your self righteous attitudes are are a joke.
Cindy,
You have my respect.
To Cindy:
We ARE being patient advocates when we argue for the use of the best possible treatment for a child. We ARE being advocates to ask alternative practicioners to justify their treatment rationale.
It does take a lot to ask for the trust of a patient and their family, and we do our very best to justify that trust by making sure to the best of our ability that what we do has a solid rationale. Science is the best way to ensure this.
You seem angry that you were told that the BMT had only a 10% chance of working. Well that could well of been true, its not to say that statistics over-ride people, its simply being honest allowing YOU to make the informed choice. A BMT is a I am sure you are aware a very big ordeal, it was only right and proper to say this to any parent in your situation. You made the right choice (and I am very happy you did), the whole point was it was YOUR choice to make you were allowed to weigh the risks and benefits. I simply speak from my own experience in that most doctors would of been supported in whatever choice a parent might make under those difficult circumstances.
My simple belief is that EBM allows us to put our hand on our heart and say that we offered the best treatment we could, to the best of our ability, we are all human we will never get it 100% right but at least we can honestly say we want to offer the best to our patients as has been shown to be the best in an open transparent and factual manner. Its not about being self-righteous its about being able to sleep at night.
To Renee and Neil: I thank you. My son was in the 'maintenance' phase of treatment when the issue of Noah Maxin hit the media. Noah had originally received treatment at the same hospital as my son(B.) The oncologist asked B. what he thought of the case - his response was that the treatment,although brutal, seems to have worked on him and he had to agree with the drs. The 10% statistic I referred to was to drive home the point that it is not the only variable in the equation of making that important decision for your child. We did not know of the probabilities until reading the clinical trial paperwork. In children's oncology,it seemed difficult for the physicians to talk openly about unpleasant statistics - brought up only if asked directly by us. In the same instance that my son beat the odds of survival, Noah and others in treatment with an 85% survival rate may have been the 15% who didnt-who knows who will survive-a gamble. When you step inside the world of cancer, you hear many stories. Stories of those with great odds that didnt make it, and those with poor statistics-who did survive. I respect and hope you continue to advocate for the best possible treatment for your patients. The anger is directed to those who so readily want to let the parents of someone like Noah hang by the gallows for acting so irresponsibly. The human element cannot be overlooked and needs to be addressed as something other than 'stupid and irresponsible'. It is vitally important to the patient for you to not only offer the best possible treatment,but to justify it. Because of litigation issues, that can be problematic. As a result, it becomes apparent that the parent/patient must make the treatment choice. For Noah's parents, after the induction phase of treatment, another 36 months may have seemed like too much for their young son and the idea of building a strong immune system seemed like the answer. Like you, I agree that practitioners of alternative medicine need to be held accountable. As for the other bloggers who think they have all the answers, it is actually possible to be a scientist and have compassion and understanding for those less fortunate than you. They are the doctors/scientists that have made a difference by bridging the gap between the medical/clinical profession and the patient/human element of this subject.
Thanks Cindy. I agree that compassion is a key skill for any doctor, empathy for the patients situation to try and understand their fears and concern. Addressing such issue may well of prevented this situation alayed parental fears and led to a better level co-operation between parent and doctor, who after all both have the interest of the patient at heart.
I was the attorney for the Stark County Department of Job and Family Services that filed the initial complaint on young Noah.
I was deeply saddened by the Noah's death. This senario was exactly what I was hoping to avoid. Although I've prosecuted seven child fatalities over my 13 year career in child welfare, this was one of the most emotionally taxing because it is the only one in which there was a real change of preventing. By the time I received the seven others, the child was already dead.
As you might imagine, I've spent significant time thinking about the case and whether the system (or I) failed Noah. I'm convinced that it has. Obviously, something failed, because Noah is dead and he shouldn't be. The question then, more precisely, is, was it the legal system, the medical profession or the parents failed him? The question is significant, because to learn anything from Noah's death, we must first determine where the breakdown originated.
Unfortunately, we will probably never know whether the legal system failed him because I did not appeal Judge Stucki's decision. My strong suspicion is that had I appealed, the result would have been the same. Legally speaking, Judge Stucki's decision is defensible. I have stayed in contact sporadically with Dr. Hord, the head of Akron Children's Hospital's oncology department since the inception of the case. My last contact with him was in December of last year. He has not responded to my email informing him of Noah's death. In any case, in December, he sent me an article which he had caused to be published in which he did research on court rulings in similar cases.
It is important to understand that this case is distinguishable from the type of case where the parents fail to get any medical treatment or use prayer as a form of treatment. We (the government) win those cases all the time. It is well-settled law that parents are generally held to a standard of providing SOME medical care for their children. Therefore, it is not uncommon for an Ohio Court to order Jehovah Witnesses to allow blood transfusions or to require the Amish to accept English treatments.
This case, however, involved a dispute between MD to MD. The parents had selected Dr. Rene Blaha of the Trillium Health Center in Lancaster, Oh, to treat their son's illness. He's the doctor that prescribed the "woo" (whatever that is). Dr. Blaha is board certified in both Family Practice and Holistic Medicine. Ohio law requires parents to provide "proper medical care" to thier children. My argument was that the Ohio General Assembly specifically used the word "proper" and therefore contemplated that judges should resolve disputes between parents and the government regarding what constitutes "proper." That's what judges do. Judge Stucki, however, essentially ruled that any treatment plan sanctioned by a licensed, board certified physician is, per se, proper medical care. Now, of course, I disagree with that position because if that were true, there would never be a case of medical malpractice. Nor legal malpractice for that matter. Courts make decisions everyday as to whether a course of treatment falls below the standards of the accepted medical community. This should be no different.
The point of all this is, that Dr. Hord's study revealed that the few courts in the nation which have considered this precise question (MD to MD) have, across the board, come out the same way as Judge Stucki. Therefore, I don't believe this is a breakdown in the legal system.
The legal system, believe it or not, would say that the risk of governmental intrusion into a parent's personal liberty far outweighs saving this one young life. We don't have to agree with it, but we do, seemingly, have to accept it.
Is this a parental problem? I met several times with the parents and I know their attorney (Greg Beck) very well as he is my cousin. In every respect, I have found them to be truly intelligent, careing, compasionate, loving parents. In fact, I would allow them, without hesitation, to babysit my own kids. I wouldn't let them make medical decisions for my kids, but I'm convinced they are decent people. So, how do you explain how otherwise rational people could make such an irrational decision? It has to be because they were sold a bill of goods by a "woo practicing quack." My guess is he played upon their emotions, their absolute inability to tolerate causing their child pain and their desperate hope for a cure. Under these circumstances, it is understandable, though not desireable, that the parents would choose a "pie in the sky" solution.
During my sporadic contact with Dr. Hord, he informed me that a complaint had been lodged against Dr. Blaha with the governing medical board (I'm sorry, I don't precisely know which one that is.I know, it's embarassing - I've spent my entire legal career in government service and I don't know who supervises you doctors). Dr. Hord tells me that, apparently, that governing body found no wrong doing on Blaha's part.
That, I can not understand. That, in my opinion, is what failed Noah.
I was the attorney for the Stark County Department of Job and Family Services that filed the initial complaint on young Noah.
I was deeply saddened by Noah's death. This scenario was exactly what I was hoping to avoid. Although I've prosecuted seven child fatalities over my 13 year career in child welfare, this was one of the most emotionally taxing because it is the only one in which there was a real chance of preventing. By the time I received the seven others, the child was already dead.
As you might imagine, I've spent significant time thinking about the case and whether the system (or I) failed Noah. Well, obviously, something failed, because Noah is dead and he shouldn't be. The question then, more precisely, is, was it the legal system, the medical profession or the parents that failed him? The question is significant, because to learn anything from Noah's death, we must first determine where the breakdown originated.
Unfortunately, we will probably never know whether the legal system failed him because I did not appeal Judge Stucki's decision. My strong suspicion is that even had I appealed, the result would have been the same. Legally speaking, Judge Stucki's decision is defensible. I have stayed in contact sporadically with Dr. Hord, the head of Akron Children's Hospital's oncology department since the inception of the case. My last contact with him was in December of last year. He has not responded to my email informing him of Noah's death. In any case, in December, he sent me an article which he had caused to be published in which he did research on court rulings in similar cases.
It is important to understand that this case is distinguishable from the type of case where the parents fail to get any medical treatment or use prayer as a form of treatment. We (the government) win those cases all the time. It is well-settled law that parents are generally held to a standard of providing SOME medical care for their children. Therefore, it is not uncommon for an Ohio Court to order a Jehovah Witnesses to allow a blood transfusion or to require the Amish to accept English treatments.
This case, however, required the court to chose between medical treatments supervised by equally credentialed medical professionals. The parents had selected Rene Blaha, MD, of the Trillium Health Center in Lancaster, Oh, to treat their son's illness. He's the doctor that prescribed the "woo" (whatever that is). Dr. Blaha is board certified in both Family Practice and Holistic Medicine. Dr. Hord is also a medical doctor.
Ohio law requires parents to provide "proper medical care" to their children. My argument was that the Ohio General Assembly specifically used the word "proper" and, therefore, contemplated that judges should resolve disputes between parents and the government regarding what constitutes "proper" - even if it involves disputes between MD's. That's what judges do.
Judge Stucki's ruling essentially stands for the proposition that any treatment plan sanctioned by a licensed, board certified physician is, per se, proper medical care. Now, of course, I disagree with that position because if that were true, there would never be a case of medical malpractice. Nor legal malpractice for that matter. Courts make decisions everyday as to whether a course of treatment falls below the standards set by the medical community. This should be no different.
The point of all this is, that Dr. Hord's study revealed that the few courts in the nation which have considered this precise question (MD to MD) have, across the board, come out the same way as Judge Stucki. Therefore, I don't believe this is a breakdown in the legal system.
The legal system, believe it or not, would say that the risk of governmental intrusion into a parent's personal liberty far outweighs saving this one young life. We don't have to agree with it, but we do, seemingly, have to accept it. Judge Stucki interpreted the law as best he could. The Ohio legislature wrote the law, I enforced it and Judge Stucki interpreted it. We each did what we were supposed to do. In the end, justice (as some would define it) was done. The fact that the General Assembly, nor the people of Ohio have moved to change the law demonstrates at least tacit approval of Stucki's interpretation. This was also born out by the overwhelming criticism of my actions in bringing the case to court. Even my wife, who is a social worker for another agency, did not agree with me.
Is this a parental problem? I met several times with the parents and I know their attorney (Greg Beck) very well as he is my cousin. In every respect, I have found the parents to be truly intelligent, caring, compassionate, loving people. In fact, I would allow them, without hesitation, to baby-sit my own children. I wouldn't let them make medical decisions for my kids, but I'm convinced they are decent people. So, is it possible that otherwise rational people could make such an irrational decision? It has to be because they were sold a bill of goods by a "woo practicing quack." My guess is he played upon their emotions, their absolute inability to tolerate causing their child pain and their desperate hope for a cure that does not involve all the horrors of chemo (whatever those are). Under these circumstances, it is understandable, though hopefully not common, that the parents similarly situated would choose a "pie in the sky" solution.
During my sporadic contact with Dr. Hord, he informed me that a complaint had been lodged against Dr. Blaha with the governing medical board (I'm sorry, I don't precisely know which one that is. I know, it's embarrassing - I've spent my entire legal career in government service and I don't know who supervises you doctors). Dr. Hord tells me that, apparently, that governing body found no wrong doing on Blaha's part.
That, I can not understand. That, in my opinion, is what failed Noah. The medical profession must be responsible for ensuring that it's members provide some minimum level of care to their patients. I can not begin to understand how the medical community could sanction this course of treatment.