Anytime there’s a news report about forced chemotherapy, my ears perk up. Usually, the story goes like this: A child is diagnosed with cancer, the parents realize the scary toxicity of chemotherapy (most likely when they see the color completely disappear from their child’s face, hair falling out in clumps, dark circles around the eyes, the palms and feet turn red, swollen and painful, the bowel movements stop and/or the intestines try to escape from the body through either end, extreme lethargy, extreme stomach pain, “concerning” echo-cardiogram results that are irreversible and on and on) the parents take the child and say “no thank you” to the hospital. Of course, the hospital doesn’t like to say good-byes and reports them to the state with a statement that claims the child will die without chemo but with chemo the child will live. CPS then seeks custody of the child in order to take them back to the hospital (which hates good-byes) so they can inject the “pretty red medicine” in the child, telling the courts that any treatment other than chemo is putting the child in grave, grave danger.

In this case, it’s a report about a family in Ohio with a 10 year old girl named Sarah Hershberger. She was diagnosed with lymphoblastic lymphoma in April of 2013. Her parents admitted her to the chemotherapy treatment but then pulled her out after they saw what the chemical agents were doing to their daughter (no matter what the doctors say, there’s no preparing parents for what really happens when a child gets the chemo drugs put into the child’s little body). The hospital did it’s S.O.P. and tried to get a judge to assign medical guardianship of the child to an attorney/nurse (removing the parents ability to make medical decisions but not removing the child from the parents physical custody). But wait! This time the judge ruled in favor of the parents. SAY WHAT?!?

What In Tarnation Is Going On Here?? (Say that with a southern accent)

It appears this judge didn’t get the memo that this isn’t how it’s supposed to happen. Maybe he doesn’t have a smart phone or had yet go home and get on his NetZero dial up connection to check his AOL email account to see the memo on the correct procedure of removing the parents ability to make medical decisions for their children. There’s also the possibility that he didn’t pass his mathematics classes in college that would have shown him how to add up the cost of treatment so he could realize that the parents just walked away with at least $1 million in their pockets over the course of two and a half years (which, of course, rightfully belonged to the medical establishment). But I’m putting my money on the assumption that he slowly went into a state of alcoholism since 2005, was in the local tavern getting insanely drunk after ranting about the referees in the Seahawks-Steelers Superbowl 8 years ago, just before making the determination that the parents were “good parents” and “understood completely the grave situation their daughter was in”. There can’t be any other logical explanation as to why this gross misuse of judicial power happened. Big Pharma must be pretty upset.

So if you haven’t caught the sarcasm by now, I’ll give you a few more minutes to review the first section of this article. When re-reading it, please read it with this in mind: I’M BEING SARCASTIC. OK, go ahead.

Let’s Put It In Perspective

A quick search for the standard treatment of lymphoblastic lymphoma returns a slew of chemical agents: dexamethasone, vincristine, daunorubicin, doxorubicin, L-asparaginase, cyclophosphamide, cytarabine, methotrexate, 6-mercaptopurine and 6-thioguanine.  WOW! No wonder the girl was deteriorating. Put those in a glass of water and drink it – tell me how you feel next week. Most people won’t drink raw milk for fear of a .00000000000567% chance of getting e-Coli (that made up percentage is not scientifically proven). Shoot, e-Coli is a walk in the park compared to what this girl will be going through once that cocktail starts doing its thing inside her bone marrow and intestines. The same people that think kids with cancer should be forced to do chemotherapy and/or radiation are also afraid to swim in waters polluted with radiation from Japanese nuclear reactors. Why? If radiation kills cancer, it will certainly kill the salmonella that you might get from that newly FDA-approved chicken from China… so put your money where your mouth is and go take a dip! In the name of prophylactic treatment even!

I have an issue with some of the news stories that are reporting about this… the way they are explaining that the parents pulled Sarah out because she was “sick” from the treatment… and that’s it. In our own experience, that’s a TOTAL UNDERSTATEMENT. Feeling “sick” sounds so innocent. Notice I used the word “deteriorating” because with that cocktail of drugs there’s no other real condition a body will be put in besides deterioration. “Sick” isn’t accurate. “Sick” is a stuffy nose or a cough. “Sick” goes away after a few days. “Chemo is killing her faster than the cancer is ” is more accurate and I’m assuming that’s what her parents saw happening.

Informed Consent

One part of the court papers shows exactly what we ourselves went through: not being informed of EVERYTHING before enrolling our child in chemotherapeutic treatment. I’ve stated before, that we had to find out a lot of the side effects and other scary “numbers” on our own; the doctors did not volunteer that information – its doesn’t help sales. Nor do they volunteer those hidden studies and side effects in the court papers when telling the judge how awful the parents were for withdrawing Sarah from treatment. With some research, I’m sure Sarah’s parents could have realized that even if Sarah survived her chemotherapy protocol, the possibility of getting a treatment related secondary cancer was more risk than they were comfortable with. The doctors also didn’t tell her parents or the courts what the relapse rates are for her treatment (7%) or what the treatment related death rate is (7%). Our doctors didn’t tell us these stats either. Cancer sucks…. but chemotherapy is right there with it. As parents, there doesn’t seem to be ANY correct answer to ANY of what’s going on. Reading the reports about the toxicity of chemotherapy in addition to seeing that toxicity actually happen to your child is enough to make a parent hide in a closet, curl up in a fetal position and cry their eyes out. I know, because I did just that. Except it was in a dark hospital room at 2 AM in the morning, listening to my daughter moan and groan in her half sleep, not knowing why or where she felt so horrible… in between her nightmares.

What If…

It’s a gamble. What if. What if there’s a way to remove the cancer without all that toxicity and the side effects that could put them right back in this position. 5 year survival rates? What about after 5 years? The parents are looking at the 2+ years of treatment and trying to decide if the horrible side effects are worth the 3 years. The doctors WILL NOT promise any life after 5 years… because they can’t. That was our question with our daughter: What about after 5 years? No one could tell us. But they were certainly willing to force the chemo on her anyway. The word “alive” to the doctors means the heart beats. That’s it. If the heart is beating, the child is alive. I think the judge in this case realized this. He realized 85% survival rate quoted by the oncologists is only for 5 years and even then, the doctors weren’t promising that Sarah would be healthy in 5 years… just alive. I think he realized that they will try to save her life now, without regard for her life after 5 years.

Parental Rights?

So the parents appear to be looking for a less toxic approach. I’m not saying its out there, but these parents are trying. I doubt there’s much research on less toxic approaches to her cancer so the cards are stacked against them. They will be the ones watching their daughter suffer regardless, so they should be the ones to make the decision. The doctors assign the treatment but sometimes the treatment kills the child (with lymphoblastic lymphoma its a 7% treatment related death rate). The doctors are not there when the child dies (the nurses are). The doctors go on their normal daily routine when a child dies of treatment. They mark in their notes “too much” under the chemo section and then go home. They get to see their family… alive. While they are watching something on TV, the parents of the child that just died of the treatment are left to clean up the horrible nasty mess. When a child dies of treatment, those court papers, the ones where the doctors all but guaranteed the child would live, seem to disappear. One of these days, a court will force treatment on a child and the child will die from that treatment [EDIT: http://www.ouralexander.org/]. I believe the judge in Sarah’s case understood that concept and wasn’t about to make a life and death decision. He deferred to the parents and put Sarah’s life in their hands… as it should be.

There’s debate about “parental rights” versus the child’s “right to live”. This debate is, how do you say, ‘hogwash’. The more correct debate title should be “Parental Rights” versus the “Child’s Right to Have an 85% Chance to be Alive After 5 Years With the High Possibility of Severe Side Effects Resulting in Low Quality of Life or Even Death Before 10 years”. That title is difficult to put in a header though. Making the choices between “parental rights” or the child’s “right to live” is a gross manipulation of emotions. It’s a fear tactic, but a tactic that this judge saw right through.

DIsclaimer

I’m not here to rail on chemotherapy. Chemotherapy was allowed to kill the cancer in our daughter. I personally am not sure what I would decide if Sarah was my daughter. Every cancer is different and every child is different and responds differently to chemo. However, the list of chemical agents for Sarah is SCARY. My rant is about being FORCED to do chemotherapy and in effect, not being allowed to find and use less toxic treatments. Will Sarah die if she goes the natural “unscientific” route? I hate to say her chances aren’t good. That’s only because over the past 50 years, parents haven’t been allowed to try non-chemical, less toxic treatments on children. But guess what; a lot of kids died when the mainstream medical establishment was determining the correct doses of doxorubicin, or vincristine or cyclophosmamide and so on. I hope she doesn’t die but if she does, I hope natural cancer treatment can be better because of it, so someday soon children can have a cancer treatment that isn’t as bad as the cancer itself. Alternative medicine is only “unscientific” because it hasn’t been studied as much as chemotherapy. That’s another story for another time. In fact, this whole debate of forced chemotherapy can’t be captured in one tiny little article like this one. The concept of why its forced is simple. The evidence of why its forced is huge. It’s a case of hypocrisy really: today’s medical establishment (and government) will not let parents use “unscientific” treatment options like the doctors did 50 years ago. 50 years ago chemotherapy was “unscientific” but it was allowed regardless. Parents who wish to try other treatments besides chemotherapy are only asking for the same freedom that those doctors had 30, 40 and 50 years ago.

As for this judge, he made the right call in my mind. It went completely against the precedent that “the establishment” tries to set. I’m sure the $1 -2 million dollars that big pharma won’t get from this family is pretty upsetting. So in the words of Richard Sherman of the Seattle Seahawks, I ask the question to the system… “U MAD BRO?”