Should a 13 year old refuse chemo?

Parent Cafe
41

<p>[A</a> closer look contains hints of sham artist, not a shaman](<a href=“http://www.startribune.com/local/44755337.html?elr=KArksUUUU]A”>http://www.startribune.com/local/44755337.html?elr=KArksUUUU) </p>

<p>There is a little more to this story (saw this in our local MN paper a couple of days ago). Basic question is whether the kid’s parents are smart enough to figure out that they are being taken for a ride by a charlatan, or will it cost their son his life? Not that there aren’t other religions or belief systems that might lead to this same dilemma…</p>

42

<p>Chemo = death by poisons = modern day witchcraft by Medicial profession (sic)</p>

<p>Doctors and drug companies love cancer (and cardiac) as it brings home the bacon $$$$.</p>

<p>Check out Haydens story - about a mothers fight to save her 14 year old from cancer::</p>

<p>[The</a> Hayden Scholarship Foundation](<a href=“http://www.thehaydenscholarship.org/HaydenStory.htm]The”>The Hayden Scholarship Foundation)</p>

43

<p>

</p>

<p>That’s a disgusting allegation. My dad is a nuclear medicine doctor who specializes in PET oncology, and his mother died of cancer. If there were anyone on this planet that my dad would want to save aside from his own children, it would’ve been my incredible grandmother. There was no person on Earth like her, and there will never BE another person like her.</p>

<p>Chemotherapy is one of the only weapons in the arsenal right now. Yes, it’s barbaric-- it’s the art of using poisons to kill the cancer faster than it kills the patient-- but cancer is barbaric, too. To insinuate that doctors are somehow withholding treatments that could magically cure cancer patients is ignorant. Yes, there are doctors who ignore holistic treatments and don’t treat the patient as a human being, and they’re wrong to do so, but doctors who don’t consider conventional medicine as an option are equally irresponsible. There are doctors who lean to one side or the other, and medicine is not devoid of profit-hungry jerks, but to characterize the medical profession as a whole to be barbarians out to make money off the suffering of their patients is a terrible mistake.</p>

<p>The thing about conspiracy theories like this is that if one person knows a secret and it’s something that truly matters and if this person has viable proof countering the common school of thought, no amount of money in the world is going to prevent the secret’s ultimate discovery. There are too many scientists in pursuit of nothing more than Truth, and the largest industry in the nation can’t possibly keep a secret that large–not with the monumental amount of research that it supports.</p>

<p>

</p>

<p>The Lord replied, “I sent you a radio message, a boat, and a helicopter! What else did you want me to do?”…</p>

44

<p>Cancer drugs are not the most profitable ones out there. They are expensive to develop and oftentimes expensive to manufacture.<br>
Right now, many of the chemo drugs are the best treatment available. The solution is not elegant but for many, it is choice between living and dying.<br>
The biggest growth areas for cancer drug development are immunotherapy and therapeutic vaccines. Most of you new cancer drugs are antibodies.</p>

45

<p>What concerns me about this case is how it effects not just the rights of the child in choosing a medical treatment and what age they can make that decision, but also the rights of the parents in choosing medical treatments for their children. Rght now, chemotherapy, like most other medical treatments, is still a “choice.” There are no laws that say when a child has cancer he/she MUST receive chemotherapy, even when the “chances” of survival are greater by receiving that treatment. There could be such a law, but there is not (for instance we have passed laws requiring childhood vaccinations). And until there IS such a law, the state should not be able to take away the legal rights of the parents to make medical decisions on behalf of their children (whether we agree with that decision or not). And yes, I think the law would need to specifically say/set forth certain circumstances that could result in the rights of parents being overridden by the state with respect to making choices relating to medical treatment, rather than arbitrarily hiding behind laws relating to child neglect/abuse. </p>

<p>There was a case a few years ago (in Virginia?) that was very similar to this involving a 16-yr old boy who had Hodgkins, underwent one round of chemo, refused addl treatment. The court ultimately decided in his favor and that state even went on to pass a law which allows minors to make such decisions and that decriminalizes such a decision with respect to the parents (although their law does say that the child must be 16 to make a choice on their own).</p>

46

<p>The Minnesota judge just ruled that he has to have the chemo. Not sure how they will carry this out…</p>

47

<p>Yes, I read an article that sounds like they followed my advice, which was

</p>

<p>From an article:

</p>

<p>However, as easy as it was for me to make my dogmatic blanket statement, I would not want to be in their shoes and I am sure they are doing what they believe is in the best interest of their child and they are in a very very difficult situation.</p>

48

<p>From the part of the judges decision I read, I think he made the right decision. I was especially concerned with this, “… he does not believe he is ill currently. The fact is that he is very ill currently.”</p>

49

<p>

But I think the point here is that the government and the child’s doctors are not acting on a “belief”, they are acting in accordance with evidence-based medicine. The kid’s doctors aren’t just idly theorizing that he needs chemotherapy.</p>

<p>pugmadkate, that was the same sentence that leaped out at me.</p>

50

<p>Actually, the judge was very sympathetic to the Hausers and has no desire to remove Daniel from their custody; this was clearly not a black and white case for him – and for that matter, it is still NOT resolved. </p>

<p>His order was based on a finding that the Hausers had violated Minnesota laws that require that parents must provide their children with care that is “medically necessary” and that exclusive alternative care is (usually) not sufficient. The family has all along said that they would consider chemotherapy - if they felt it was medically necessary. The family had allowed x-rays to be taken in April, which seemed to show that the tumor had grown. The parents disagreed with the doctors and felt that the x-rays were showing scar tissue, and when the doctors wanted to take another x-ray in May, the family would not allow it. It is this action that the judge ultimately found was a “clear failure to provide what was medically necessary to Daniel” (p 26) since up until that point the family was seeking second opinions and consulting with doctors.</p>

<p>The judge also found that “The State has successfully shown by clear and convincing evidence that continued chemotherapy is medically necessary” (p 42 of Order). At the same time, the judge recognized that if the tumor had grown since the first chemotherapy, Daniel’s survival rate may now be much lower than the 90-95% rate that the doctors had testified to during the trial. And therefore his ruling on the chemotherapy will not be final until the results of a (court-ordered) x-ray are known in a few days – assuming the family complies with this part of the order (pp 45-46):</p>

<p>

</p>

<p>This article includes a link to the judge’s very thorough and well-thought out 60-page order:</p>

<p>[Judge</a> orders boy, 13, to have cancer treatment](<a href=“http://www.startribune.com/lifestyle/health/45092817.html?elr=KArksLckD8EQDUoaEyqyP4O:DW3ckUiD3aPc:_Yyc:aUUJ]Judge”>http://www.startribune.com/lifestyle/health/45092817.html?elr=KArksLckD8EQDUoaEyqyP4O:DW3ckUiD3aPc:_Yyc:aUUJ)</p>

51

<p>It seems too bad that neither side – the child’s oncologists and the patient and his family – couldn’t work together for a more acceptable solution, one that wouldn’t add to the incredible stress on this child and his family. That’s not going to help him get better. There are several outstanding centers – like the Cancer Treatment Centers of America and several university research centers – that are allied with conventional medical treatment centers (hospitals) and yet include those alternative/complementary treatments that <em>have</em> shown efficacy and can often mitigate the effects of chemo, which might make that option more acceptable. The truth is that the methods used to treat cancer, particularly given the huge amounts of money thrown at the War on Cancer, aren’t working very well – i.e., the real survival rates haven’t increased significantly in proportion to the incidence of disease despite years and years of research and similar treatment approaches – and more patients are realizing this and losing faith. But it’s what we have, so we work with it to get the best odds available, even when the real odds are often skewed by manipulated statistics.</p>

52

<p>The boy and his mother didn’t show up for the hearing but instead fled somewhere. There’s a warrant for the mom’s arrest.</p>

53

<p>Here’s the link to the newspaper article about the mom and boy taking off:</p>

<p>Had Daniel attended Tuesday’s hearing, he would have heard his doctor testify that a chest X-ray taken Monday showed that his tumor has grown back to its original size before chemotherapy. A medical report filed with the court also noted a "significant worsening’’ of the tumor since a March 13 X-ray.</p>

<p>[Where’s</a> Daniel Hauser and his mom? The search is on](<a href=“http://www.startribune.com/local/45427417.html?elr=KArks:DCiUHc3E7_V_nDaycUiacyKUnciaec8O7EyUr]Where’s”>http://www.startribune.com/local/45427417.html?elr=KArks:DCiUHc3E7_V_nDaycUiacyKUnciaec8O7EyUr)</p>

<p>And a commentary piece that includes:</p>

<p>Maybe that’s why so many readers and talk-radio listeners were willing to believe that a 13-year-old boy could be a church elder and a medicine man; after all, he even has the papers to prove it. Maybe it’s why they believed he could understand his own mortality and make hard decisions about his own health care.</p>

<p>Sadly, nothing could be further from the truth.</p>

<p>Not only could Daniel neither read nor understand the affidavit he signed saying he preferred “native” treatments over chemotherapy for his Hodgkin’s lymphoma, but he also could not read. Period. When tested by his teacher for entrance into a charter school, according to court documents, Daniel, who had been home-schooled, could not identify the following word:
“The.”</p>

<p>And:</p>

<p>Alternative remedies have become almost mainstream, as most doctors encourage them in conjunction with the science and art of traditional medicine. But as Al Carroll, a Mescalero Apache professor, told me, Native Americans’ biggest complaint is a lack of access to good modern medicine.
[Jon</a> Tevlin: Boy with cancer should not be a casualty of ignorance, too](<a href=“http://www.startribune.com/local/45190127.html?]Jon”>http://www.startribune.com/local/45190127.html?)</p>

<p>elr=KArks:DCiUHc3E7<em>V</em>nDaycUiacyKUnciaec8O7EyUr</p>

54

<p>So this mother ran off with her sick kid. Haven’t read any updates. In another case, mother is charged with second-degree reckless homicide for praying for her daughter instead of seeking medical treatment. </p>

<p>[The</a> Associated Press: Wisconsin prayer death trial goes to jury](<a href=“http://www.google.com/hostednews/ap/article/ALeqM5idOw7yXOoyaU14MWjkJIllXXjMoQD98BD0M00]The”>http://www.google.com/hostednews/ap/article/ALeqM5idOw7yXOoyaU14MWjkJIllXXjMoQD98BD0M00)</p>

55

<p>This is a really tough issue. As I have posted a few other times, I have a child who went through high dose chemo as he was diagnosed with a high risk cancer. It was a very tough two years. I met many families whose kids did not make it, and even more whose kids were very ill from the side effects of the cancer.</p>

<p>In cases where the child did not have a good chance of survival, the decision to undergo the chemo was up to the parents. I don’t know where the dividing line is. I do know there was a girl who was in the high risk group with leukemia, because of her age, whose parents felt that after the initial induction, they wanted a revised protocol because of the severity of side effects she suffered from the chemo. This was done despite the fact that it lowered the survival rate. She did relapse, and the parents chose not to treat the disease further. The doctors did not fight the decision, and she died without a mainline medical attempt to save her, getting only the benefits of pain killers and comfort care from that part of medicine. I do not know if they were pursuing alternative medicine avenues.</p>

<p>It is difficult when you have teens who do not want treatment. None of the kids want the treatment at times, and with the younger ones, you can literally force the stuff down their throats or hold them down when they did need direct treatment. With the older ones, it becomes more difficult. While we were at the clinic, we were shown a film that in one part warned parents not to trust that kids were taking their meds. Sit and watch them take it. Too many other trustworthy kids would dump some of the meds or vomit it up. So you watch them for 15 minutes. Also the doctors would monitor labs to make sure the proper drug levels were showing up regularly because this is a big problem.</p>

<p>This is the third case of this sort that has made major headlines. The problem here is that the cancer, Hodgkins lymphoma is about 90% curable with mainline treatment. The kid is still only 13, and it is difficult to separate his opinions from his parents’ who do not want their child treated. In this case, given the way the laws are written, he should be forced through treatment, in my opinion, difficult as it is going to be. It would be the same if he had some traumatic accident and was fighting the life saving procedures. The doctors would be compelled to go through the process despite objections from the kid and parents. That the treatment for cancer lasts a long time, and is more chronic than acute in administration is another big problem in treating someone who is balking.</p>

<p>My cousin’s son was burned seriously last year. He was in so much pain that he did not want to be treated, but was treated nonetheless. Apparently this is usual at burn centers, and that state of mind is taken into account even in adults. Just about everyone decides to be allowed to die rather than go through that ordeal. </p>

<p>The situation with the young teen really does tear at me. It is a tough go.</p>

56

<p>

</p>

<p>Sure.</p>

<p>(Probably doesn’t help that I’m atheist and see religion as irrational with most of its benefits being through placebo effect. But hey.)</p>

57

<p>There was a case in 1994 where a 16 year old who was fighting Hodgkins Lymphoma ran away before the end of his treatment. He returned and was put on an alternative medicine regiment of 714-X, Essiac tea, vitamins and supplements. Billy Best is alive and well today. In fact there has been speculation that he is involved in this case, something he denies. </p>

<p>Alternative treatments can work. They just do not have the degree of success as the protocols developed. The records on dosages, successes, failures is not accurate, nor statistically valid as large enough like samples are not available. However, there are folks who prefer that route. Fine for them, but according to the law, not for their minor children.</p>

58

<p>The only thing I’m certain about in these cases is that charging the parents with murder is not productive and not a good use of the millions it will cost to prosecute and imprison them.</p>

<p>How could it serve as a deterrent to other parents when the possible death of the child is not a deterrent? And I don’t feel the need for societal retribution against the parents. They are not hateful people, they aren’t a danger to the public, and they’ve suffered the worst punishment humans can endure.</p>

59

<p>Of the three highly publicized cases that I know, all of those involved are still alive despite not continuing the chemo.</p>

60

<p>Cpt, in the Billy Best case he received 5 cycles of chemo prior to running away, that might well have been enough to cure him, depending on the stage of Hodgkins’, the regimen, etc. For him to say,“look, I survived” is, at best, misleading. Ido not know the details of other persons who have come forward during this situation. Hodgkins’ is a different kind of cancer, a whole 'nother disease than say leukemia.</p>