Comments on Thanks, Mom & Dad

No, they knew what they were doing. They wanted him dead.

OK, OK ... isn't that enough child-related horror stories for one day already? Yeesh.

Some parents protect their children to death. Hard to know what any of us would do in the same situation.

This happened to a relative of mine's foster child. the parents took him out of chemo and they lost custody. What is crazy is that they were allowed to keep custody of their other children...

Dan/Poe: read this article before saying this shit. doctors do their best, but they don't always have all the answers - in fact, some purposely mislead.

most parent are trying to do the best they can with the information they have at hand.

http://www.salon.com/mwt/feature/2007/05/18/autism_misdiagnosis/index_np.html

oh, and yes, I do vacinate my child.

Umm, Dan I rarely say this about your stuff, but... what's your point? Is this supposed to be part of the "straight parents aren't any better" series?

My mom is dying of pancreatic cancer. It kills 80% of the people who get it in the first year, 95% at five years. She's undergoing chemo in the small chance that it will cause the cancer to go into remission.

But it reduces her quality of life and causes her much pain and misery. All for a gain that is unquantifyable and may be nil. Many people have suggested we try holistic methods instead of chemo. While we have said "no", I have total sympathy for a family who might hold out hope for a non-traditional method.

Cancer is a bitch. They weren't trusting Zul or going to a quack in Manila- they were making the best of a horrible, horrible situation.

Dan/Poe: read this article before saying this shit. doctors do their best, but they don't always have all the answers - in fact, some purposely mislead.

most parent are trying to do the best they can with the information they have at hand.

http://www.salon.com/mwt/feature/2007/05/18/autism_misdiagnosis/index_np.html

oh, and yes, I do vacinate my child.

I dunno, chemo sucks and doesn't necessarily work. You're just trying to kill your body's cells in the hope that you happen to kill the cancer as well. It's akin to medically throwing shit at the wall and hoping something sticks. I can't see holistic medicine as that much worse. At least the kid didn't spend the rest of his life as a hairless walking corpse.

Apple seeds. B17.

Alternative Medicine is really an alternative to (real) medicine. These alternative practices need to be regulated just like modern medicine is regulated. The quacks and charlatans have been given a free ride for far too long.

I personally would be more likely to trust the doctors, you know, since they went through the trouble of going to FUCKING MEDICAL SCHOOL AND ALL!

Oh well, only the parents will have to live with the mistake for the rest of their lives.

Dan, I love how you are one minute the indignant father who’s not going to have conservatives dictating how your child should be raised, and the next minute you're a pious asshole who stands in judgment of the choices other parents have made in what they deem to be the best interests of their child. I'm sure they are devastated and couldn't care less about this stupid post, but it seems like a particularly low shot coming from parent. I can't imagine what it would feel like to be thrust into making those sorts of decisions and just hoping that the love of your life would somehow go on to live a long, healthy life. But why not second guess them for our amusement?

@8 - "I can't see holistic medicine as that much worse."

Marginal effectiveness > zero effectiveness. Science-based medicine certainly fails sometimes, but I'll take it over quacks touting herbs and vitamins as cure-alls every single time.

Yeah, apple seeds, that's the ticket.

Chemo may be a bitch, but it works, a lot more than anything else they've found. For all the ragging on "conventional" medicine, it has made remarkable strides in cancer remission in the past couple of decades. Alternative medicine mostly works on people who aren't sick.

Chemo is a crapshoot. It's the medically accepted best form of a crapshoot, but when you elect to undergo chemo you're essentially signing yourself up for a miserable, torturous guessing game. It might work for you, it might not.

It's noted in the article that the parents switched their kid to a healthier/holistic approach after his cancer went into remission. If you've ever watched someone suffer through chemo treatments, you can understand how these parents might've come to their decision after their kid appeared to be healthy again. Putting him back on chemo would guarantee to make him "sick" from the effects of the treatment. And again, with no guarantee that the chemo would actually work.

Cancer fucking sucks.

Dan, I love how you are one minute the indignant father who’s not going to have conservatives dictating how your child should be raised, and the next minute you're a pious asshole who stands in judgment of the choices other parents have made in what they deem to be the best interests of their child.

In addition, there's the inference that only conventional medicine can help. Every day, people try to take in as much information as possible and weigh their options...rather than having an authoritative medical system impose treatment upon them. Often times, conventional medicine works well. Alternative approaches to illness often work too. It's about having the information and being able to make decisions.

These are horrible decisions to have to make, and not light ones at all. "Thanks, Mom & Dad" makes it sound like these parents are hideous, uncaring ghouls who let their child die. Is that really what happened?

i'm sorry, but the took their kid off of chemo for four MOTNHS, during FIVE YEARS of treatment and that makes them abusive parents who wanted him dead? that doesn't even make sense. also, please note that the four months ended MORE THAN FOUR YEARS AGO.

so in fact, for the last four and a half years he has been treated solely with the magical perfect chemo. 1 in 4 kids with leukemia WHHO ARE TREATED WITH CHEMO will be dead in 5 years.

four months of holistic medicine more than 4 years ago didn't kill this kid, chemo didn't kill this kid, abusive/neglectful parents didn't kill this kid. leukemia killed this kid.

i don't understand why people don't read the articles they comment upon, or maybe it's a comprehension issue? i sincerely do not understand.

A friend of mine got a rare form of cancer a few years ago. There wasn't much chance of a cure. She nevertheless went through aggressive chemotherapy. Her hair fell out. She lost half her body weight (and she wasn't heavy to start with). She was so sick from the chemo that she could only function well enough to leave the house about 2 days a week. She had medical insurance, but it didn't cover all the costs, of course. After over a year of this, and nearly bankrupting both her and her parents, she died. By the end, she, her family, and everyone involved wished she had not bothered with the chemo.

A different friend had breast cancer a few years ago. She also did chemo. She lost her hair, but otherwise managed pretty well. She is in complete remission and perfectly healthy today. Without the chemo, she would undoubtedly be dead.

Chemo is basically an attempt to poison the patient just enough to kill the cancer without killing the patient. Yes, sometimes it works well. Sometimes it is a glorified, medically endorsed, expensive crapshoot. Sometimes it is merely delaying the inevitable, and appeasing doomed people who are desperate for a cure.

I don't know if they made the right decision or not. Yes, the kid is dead. But do we know for certain that he would be alive if he'd stayed on the chemo? Would he be alive 6 months from now? Would he have had a more enjoyable 3 years? Is quality of life, even if short, meaningless?

Maybe they made the wrong decision. Maybe if they'd have kept up the chemo, the kid would be alive and well, and live a long and happy life.

Maybe they made the right decision. Maybe he would have been even sicker and died even sooner if they'd have been forced to keep up the chemo.

All of our speculation is no better than arm chair quarterbacking.

"Rainbow Babies Hospital"?

sometimes it is very hard to love america.

"Alternative approaches to illness often work too."

Sorry ... no, they don't. The only meaningful distinction in medicine is between science-based treatment and treatment with no scientific basis. If "alternative" medical practice was uniformly subject to the same scientific standards that conventional medicine is, the entire industry would collapse. The only ills it can brag any degree of success on are those that are more susceptible to placebo effects (e.g. depression). No one has successfully defeated cancer with a herb or fruit seeds.

rainbow babies and children's hospital" no one drops the "and children's" and most people just call it rainbow. it's had that name for at least 50 years. they have excellent pediatric care and treated my brother for years in the 60s and 70s. it was wonderful then and from what i hear still is a great children's hospital. they were great to my brother and my mom, and even me.

I didn't file this under "Every Child Deserves..."

It's not a slam of hetero parenting -- it's about guilt. I don't know what I'd do if my kid had cancer -- besides sob. I have friends with a kid with cancer, in chemo, and I ache for them. But I don't think I'd pull my kid out of what had been successful chemo treatments and go off in search of a doc who recommended--what? Vitamins?

No one knows if the kid would have died anyway. But, Christ, maybe not--not if his chemo treatments hadn't been interrupted. "Thanks Mom & Dad" wasn't a jab at the genders involved. Just the decisions made. Jabs at hetero parenting go under ECDAMAAF -- and they're not jabs at hetero parenting, but at people who insist that only hetero parents are fit parents. Not true, as we see in the news every day.

Oh, and I could post a ECDAMAAF every day. And I don't. Maybe once a week, one every other week. I show restraint.

tsm, I'm not reflexively anti-medicine (as I said, my mom IS undergoing chemo) but your email presupposes that cancer is deterministic and not susceptible to placebo effects.

Our family is finding at least with Pancreatic Cancer that NOTHING really works and that they prescribe chemo because, for instance, one protocol only has an 80% one year mortality instead of 85%. They just don't know why some cancers are more aggressive than others, and why some patients do well and some do poorly. They can't even give you odds based on your current condition- "next month" vs "next year" kind of stuff. Not true w/ all cancers, but it is true w/ PC.

What is helping my mother survive is hope and the thought that she's doing everything that she can to fight the disease. It keeps her eating when she's feeling nauseous, it keeps her taking all her various meds with all their nasty effects.

I'm glad she's taking chemo. But if she woke up tomorrow and said "it's not worth it anymore. It's too painful. I'm going to just take appleseeds because maybe they work", I wouldn't fault her.

Some day, they're going to find a cure for pancreatic cancer. Maybe it will come out of existing protocols. Maybe it will come from a plant nobody's ever heard of. Maybe it will come from appleseeds.

@16 "i'm sorry, but the took their kid off of chemo for four MOTNHS, during FIVE YEARS of treatment and that makes them abusive parents who wanted him dead? that doesn't even make sense. also, please note that the four months ended MORE THAN FOUR YEARS AGO. so in fact, for the last four and a half years he has been treated solely with the magical perfect chemo. 1 in 4 kids with leukemia WHHO ARE TREATED WITH CHEMO will be dead in 5 years. "

EXACTLY!!! come on dan, i love you, but really man. these parents tried to do what they thought was best for their child. leukemia killed my mom. it is a brutal disease. don't blame their 4 months of exploring other options 4 years ago for his death. that is just harsh and unfair.

@22 - yes, I understand the desperation that might drive someone to an unproven therapy. But this is precisely why I am so anti-alternative medicine - they take advantage of people's desperation, and their frustration with therapies with spotty effectiveness, to sell them other therapies that are completely ineffective and promise results that no existing evidence supports.

It's theoretically possible that someday we might find a plant extract that cures cancer. But until some science comes to back it up, trusting in that is no different than, say, trusting in prayer.

> But I don't think I'd pull my kid out
> of what had been successful chemo
> treatments and go off in search of a
> doc who recommended--what? Vitamins?

We don't know that they were successful. Three months into a 3.5 year plan isn't time enough to tell. But it *is* time enough for horrible, debilitating side effects to manifest themselves. Some of the side effects are the same as with advanced cases of AIDS because (especially four years ago) they still have problems boosting the immune system response to the chemo, so you get skin diseases and soft tissue infections in all your sensitive places. They can be so severe they prevent eating.

We don't know what the doctor recommended. I looked into some of the therapies my friends recommended. Some of them purport to operate in ways not dissimalar from some chemo agents.

I suspect this is a "where do you draw the boundaries between absolutism vs. relativism in parenting" issue. Punching your kid in the mouth is absolutely child abuse. Spanking them is subjective. I've never had to spank my kids, but I've seen kids who needed spankings.

I think some will say taking your kid off chemo is abusive but it seems to me firmly in the the "you never know until you have to face it"- which hopefully neither you nor I ever will. Thus I'm not willing to condemn those parents.

You know, Dan, once when I was about 7 years old I contracted a flesh-eating staph infection because my (gay) dad had done such a bang-up job of managing our finances that we were homeless and living out of our car in the woods in Oregon. After my fever spiked to 104 he took me to the doctor and the doctor gave me a special soap that killed staph infections. So I used that soap every day, bathing in a stream near our car, and the staph infection went away. Only later, the soap was removed from the market because it causes skin cancer.

So tell me: if I'd gotten skin cancer and died, whose fault would it have been? The medical establishment or my gay dad? Or maybe it's nobody's fault. Maybe shitty things just happen and parents make what they hope is the right decision and sometimes they screw the pooch and have to live with the horrible painful consequences. And then, if they're really lucky, they get someone like you standing around being a dick about it.

And just as an aside, I find it curious that a man whose sexual identity was considered a mental illness by the mainstream medical establishment until 1973 is such a fucking cheerleader for blind submission to the will of the AMA. I guess nobody’s as zealous as a convert, huh?

On one hand, you have parents who resist conventional medicine for assorted reasons. Some are dumbshits who believe the quacks. Some, very likely in this case, simply hate watching their kids suffer.

On the other hand, you have parents who will force their kids to endure every painful, debilitating treatment (even with little to no hope of success) because they can't let go.

Truthfully, if I were still a child, I'd prefer the former.

it sucks that thier personal tragedy has been turned into a political issue like this. It seems to me that those four months didn't make much of a difference in the end; he lived for years more on chemo. Sometimes the medical community makes mistakes, it isn't unheard of. In the midst of such an emotionally desperate situation, it would be really hard to not try something that seems better. Besides, hindsight is always easier, and they weren't being too crazy, they did convince the courts and kept custody. who knows, maybe the chemo killed him and they saved 4 months of his life.

Does anyone have complete medical information about this case? Was it leukemia? ALL or AML? What type?
Big Sven is right, it's not the same to give chemo a try on a pancreatic cancer or in breast cancer. I do firmly believe parents have every right to decide for their children in delicate situations, with proper information and support either way. However, a M3 and a M0 leukemia are very different, and cutting treatment precisely in remission might make it impossible to go into remission a second time. All considered, it is better for everyone involved that patient's right to choose are respected in every medical field.

Jesus Dan, you sure are sensitive to your own suffering. If you're responding to my post, I didn't imply in any way that you thought this was a hetro issue. My point was that it's certainly hypocritical to tell others to butt out of how loving parents raise their child and then go second guessing these devastated parents who tried something you don't agree with in the hopes that their child would be healthy.

I'm a parent and not a doctor. Maybe this is more one-sided a decision than I realize, but, you say "[n]o one knows if the kid would have died anyway" when it seems that your initial post assumes that, but for the parents, the child wouldn't have died. I don't know what I would do, but I certainly would explore any option that might stop my baby's pain and allow him or her to live a long, healthy life. I'd be open to options, and I can understand where one might lose track of objectivity in this situation and maybe be taken advantage of. Maybe this wasn't a good choice, but cancer comes out of remission and this child died years later. Maybe these people were too gullible and lacked intelligence, maybe they were emotionally distraught and grasping at straws. I guess from this distance and given their loss, I'd extended them the benefit of the doubt.

Given that you don't want to be judged by people who don't know you or your situation, I would think you would not judge these people and maybe empathize with their loss as a parent. That was my point.

Five years of fighting cancer, a hole in their hearts that will never heal, and likely bankruptcy and divorce. Plus, I would guess that these people are questioning lots of decisions they made along the way. You may show restraint in other instances, but I would say that you were thoughtless and a little hypocritical in this case. Further, with my baby at home healthy, it's hard to feel sorry for myself and my petty troubles when I read about stories like this.

I show restraint.

Guffaw.

i'm sorry, but the took their kid off of chemo for four MOTNHS, during FIVE YEARS of treatment and that makes them abusive parents who wanted him dead? that doesn't even make sense. also, please note that the four months ended MORE THAN FOUR YEARS AGO.

so in fact, for the last four and a half years he has been treated solely with the magical perfect chemo. 1 in 4 kids with leukemia WHHO ARE TREATED WITH CHEMO will be dead in 5 years.

four months of holistic medicine more than 4 years ago didn't kill this kid, chemo didn't kill this kid, abusive/neglectful parents didn't kill this kid. leukemia killed this kid.

i don't understand why people don't read the articles they comment upon, or maybe it's a comprehension issue? i sincerely do not understand.

I agree with every word of this. Common sense and a little compassion, please! If these parents had neglected chemo at all, I'd be right there with you. But come the fuck on, Dan: the medical establishment isn't perfect, and it's definitely out to make money as a primary concern much of the time. Alternatives can be full of shit, but they can also have a lot of wisdom that the establishment wants to supress because it isn't profitable for them. I know it would be very comfortable and easy to be able to think we can trust everything the medical authorities say, but we can't. They're fallible, like all people.

In a world full of abusive parents, fathers who rape their kids, mothers who teach their daughters it's sinful to masturbate, and parents who throw their gay kids out of the house, aren'ts there better examples of unworthy parents out there than the mom and dad of a cancer patient who just didn't know what to do? They weren't following some dogma, they were desperately trying alternatives when they saw that something didn't seem to be working. What parent wouldn't?

16 & 23:

As I understand it, chemo works sort of like antibiotics: it kills the most susceptible cancer cells first and the strongest ones last. That's why, if a cancer recurs after chemo, the same chemo regimen is likely to be less effective if used again -- the cancer cells that survived the first chemo and seeded the new growth were the ones that were most resistant to the drug(s) used, and now *all* the patient's cancer is resistent to that drug(s). So taking a patient off chemo 3 months into a 3.5-year regimen is probably the worst thing you could do: it's a way of weeding out the weakest cancer cells and leaving the strongest ones around to multiply. Just because this patient died a long time after the break in chemo doesn't mean that the break in chemo wasn't fatal.

It's impossible to know whether or not he would've died without the chemo break, but knowing the survival statistics for that particular type of leukemia would give an indication (though not certainty). One wishes the story included more information. The only reason to publicize an agonizing story like this one is as a cautionary tale, but it doesn't caution very effectively with so little detail.

Just addressing the 'better cancer treatments all the time" comment by fnarf. Actually, treatments for cancer haven't changed much since the 1960s. They are still mostly blunt instruments that can cause as much damage as the disease they are trying to cure.

What has changed is our ability to DIAGNOSE cancer. And catching it early means a better chance of 'cure' (which is a relative term, of course...). The reason we have more cancer survivors now is because of earlier diagnosis, not because of better chemo.

Chemo is horrible, horrible. Not only does it make you incredibly sick, but it can have permanent cognitive and physical effects. I don't blame these parents at all for not wanting to put their kid through it anymore. Scientific medicine has pretty significant problems with addressing pain and suffering, and alternative medicine is far better at dealing with this.

Many alternative medical practioners are NOT charlatans looking to make a quick buck, but are deeply sincere about what they do. And one thing they DO do well is address the horrible suffering people with cancer or pain are going through. Conventional medicine mostly pretends like pain and suffering do not exist. And I cannot imagine what kind of suffering this family went though.

Toadlady-

Wellllllll, chemo drugs have changed, and pain management in scientific medicine has gotten much better.

(1) One of my mother's chemo drugs is Avastin, a genetically engineered clones antibody that has both human and mouse components. It prevents blood vessels forming at the tumor site, thus starving the tumor (hopefully.) Hardly 60s technology.

Even the primary drug for pancreatic cancer, gemcitabine, is a much more benign drug that produces much fewer side effects than the main drug a decade ago, 5-FU.

It still causes your hair to fall out and lots of constipation and nausea and tiredness and fuzzyheadedness, which leads me to the second point:

(2) With the rise of hospice medicine, the treatment of the *secondary* effects of chemo has gotten better. The thing I most feared when my mother was diagnosed was not the fact that she was going to die (I'll worry about that later), but that she was going to be a living zombie in constant pain before her death.

What the onco's said, and has come to pass, is that the pain is pretty much *always* manageable and symptoms have their own medications. It may be different for less lethal cancers, but nobody's worried that my mom is going to become a junkie, and they let her take as many opiates as she likes. That takes care of the pain and nausea.

Then, for instance, there's the constipation. Constipation that makes you throw up all night long. BUT- there's a medicine for that. And now my mother doesn't throw up all night long. And so it goes for most of the symptoms (except for hair loss- my mom considers that the least of her worries- and lowered appetite and constant fatigue.) This revolution in symptom management has occured in the last five years.

So I agree with you that SOME parts of the medical establishment are very corporate and lacking in compassion, by being an educated patient you can find relief for many of the most dread aspects of dealing with cancer in a medical framework. And the onco's are great.

Note: I'm not a doctor, and don't have any family in the medical field. I've just unfortunately had to reluctantly become an amateur oncologist in the last eight weeks.

Big Sven--I'm so sorry your mom is going through this. I'm sorry you're going through this, too. Good thoughts from me.

Interesting dialogue--thanks. I've watched family members die of cancer. I've had cancer. All choices are delicate and complex when it comes to anyone choosing treatment, especially for someone else. And if it takes inflammatory comments about people's inevietably flawed choices to start passionate conversations like this--great.

@24---There's a lot of new, hard science research (try Esther Sternberg or Tor Wager in google scholar) going on about the placebo efffect, as well as how brain/emotional/hormonal activity can both make people sick and cure them.

Big Sven, I'm glad your mother is benefitting from the advances you describe. My mother went through Chemo and a whole world of other treatments for Leukemia about 8 years ago now, and the pain was horrible. She had sores all over, lost her hair, her appetite, weight, and for a while there wasn't my mom anymore.

Luckily, she was at UW hospital, where they offered to let her into a research study using a new method to treat leukemia. The method worked for Mom. It left her weak, hurting, and dulled for months, but she was alive, and since then she's regained her strength, regained her self, and is still in remission.

I sympathize with what you're going through and hope it all works out as well as it can.

Boomer and Jono, thanks for the support. I am finding that having an immediate family member with cancer is like being in a terrible fraternity- one that nobody want's to be in, but one that once you're in is incredibly supportive. I remain hopeful but not optimistic.