Miette’s Airstream has sat in the driveway for a few months now since its been winterized for the cold weather. It’s very difficult to not notice a big bright shiney reminder of what our family went through in 2012. It helps us not take for granted the things that we overlooked before. I’m not going to say its an everyday slap in the face, but its tough not to notice that we have to be careful when pulling into the driveway to avoid running into “Miette’s Airstream”. Miette likes to camp out in it every once in a while so it’s still getting used while hibernating 🙂

Spring is just around the corner and we are getting anxious to hook up the Silver Eagle and get out of the cold gray weather! No plans yet but I’m sure we can throw something together at any moment. In the mean time we changed the look of the website and also posted another video of Miette. Blue Bunny Ice Cream was a sponsor of Miette’s Make-A-Wish event and did their own video of her special day (Make-A-Wish did a video of it as well and can been seen here).

That’s all for now.

I recently read an article written by an author who thinks the government correctly dealt harshly with Johnson & Johnson over the illegal promotion of the drug Risperdal. As a background, this drug was promoted and used for treatments that it wasn’t approved for (this is called “off-label” use – don’t get me started on that… in this post) while downplaying the severe side effects (Hmm, sounds familiar. *Cough* CHEMO *cough*). This resulted in some people dying from taking the drug (another cough). The FDA fined Johnson & Johnson $2.2 billion for doing this.

This article is a mockery of logical thinking. It’s a slap in the face of “real people” thinking. You ask, what is “real people” thinking? To me, it’s a common sense that those who are outside of a certain situation can recognize, when those who are ingrained and buried deep inside a situation are unable and/or unwilling to recognize. In this case, those on the inside of the situation are the government and the pharmaceutical companies.

First, a $2.2 billion fine is literally a slap on the hand to Johnson & Johnson. The article calls the action that the government took regarding Johnson & Johnson’s violations “dead serious”.

Go To Jail. Go Directly To Jail. Do Not Pass Go.

The government can’t be “dead serious” about pharmas doing wrong things. If the government was dead serious about not letting these extremely large corporations break the law – in this case, killing people – they would do what the government usually does to individuals who kill people: put them away. The individual lawbreakers, those that commit crimes on the street, get put in prison. A prisoner is in a state of confinement or captivity. Confined from what? They are confined from their normal life in society. They are removed from society and enter into a state of captivity. Captivity is a state of being kept in one place and not being able to leave. Putting a company away would mean dissolving them. Making them go to a place where they no longer are allowed to be a part of society, where they no longer get to partake of the things that a non-captive corporation has the freedom to do – make money. A prisoner is not allowed to do business with society. If a big company kills someone, then that company should be held to the same standard.

But wait, there’s a slight problem. The government is waiting to collect the corporate taxes from these companies who kill people; currently around 35%. In 2012, Johnson & Johnson’s taxable earnings were $10.8 billion dollars. 35% of that is $3.8 billion dollars. So if the “dead serious” government decided not to have a double standard and actually removed companies who killed people from society, that means the government would lose $3.8 billion every year and even more as the companies grow. Not including the taxes the government gets from the all the employees and stockholders of that company (remember, most large corporations are double taxed in this way). No, no… putting these law breaking companies away is not what the government wants to do. It’s not in the best interest of the government. To put the fine into perspective, $2.2 billion is just one’s years worth of growth to a company like Johnson & Johnson.

Let’s Bring it Down to the Real World

I bet you a drunk driver who accidentally killed another person with their car and ended up in prison would like to have the same leniency from the government as the big pharmas get. For some reason, when a pharmaceutical company kills someone with a drug because they were too greedy and promoting a drug for a health condition it was never going help, this is less of a crime. This is, in fact, even worse since some of these crimes are premeditated by the pharmaceutical companies. It’s done on purpose. A drunk driving killing is an accident (most of the time). The equivalent scenario of the pharmaceutical company’s behavior is someone who purposely burns down a house because they are getting paid to do it, knowing there are people inside but not really concerned about that part. Can the people get out? Maybe or maybe not. Will the patients die from the drug? Maybe or maybe not. What’s the difference? One could say the pharmaceuticals actions are merely reckless. Reckless with what? Well, with the drug of course. The fallacy to that argument, in this scenario, is that the arsonist was just being reckless with their tool: fire. But when the arsonist gets caught, they are removed from society.

At the very least, a real “person” within that law breaking corporation should be put into a state of captivity. After all, a piece of paper displayed in a frame on the wall of a corporate headquarter buiding didn’t actually kill the person. A human made the decision that “accidentally” killed someone – much like the arsonist or drunk driver. Sometimes its a committee made up of humans that direct events that lead to the reckless behavior that ends up in death(s). Regardless, behaviors, actions and directives can be traced back to a human being. A $2.2 billion fine is not holding everyone to the same law. Otherwise, the government should fine the arsonist 20% of their adjusted gross annual income. Let’s say that reckless arsonist made $50,000 after deductions. If that arsonist was treated exactly the same as the corporations who killed people, they would only have to pay $10,000 and continue to be free… and possibly commit the same crime a little bit down the road. Argue what you want, it’s the same 20% slap on the hand ratio that Johnson & Johnson received (using their 2006 net income of $11.1 billion). It’s also a slap in the face to those surviving family and friends of those who were murdered.

Actually, it’s a pretty good business decision if the goal is to make as much money as possible from a product. The drug in the article, Risperdal, made $1.7 billion in illegal off-label sales in ONE YEAR alone: that was August 2005 through August 2006. That was 15% of Johnson & Johnson’s $11.1 billion net income for 2006. Taking a 3 year window as a sample means the drug, promoted and sold for non-approved purposes (which is illegal), made an estimated $5.1 billion (if each year the drug made $1.7 billion). I am estimating because of the lack of data to show exactly how much money Risperdal earned from being illegally promoted. How does this equate with an “individual criminal” scenario with an arsonist being treated the same as a large corporation? As the table below shows, this means if the arsonist was paid for what he did – the equivalent amount of what Risperdal generated, he would net $13,000 over the same 3 year period – and NOT have to go to prison! Now, we all know Risperdal was marketed and sold illegally (which again, resulted in DEATHS) for more than 3 years, so the payoff is actually is higher. This is just used as an example – and a sad one at that. It actually shows that the $2.2 billion fine isn’t even a slap on the hand – since they were caught committing a crime, they could just chalk it up to an expense needed to generate a higher revenue stream.

* $5.1 billion is 46% of $11.1 billion. 46% of $50,000 is $23,000.

The New Permit Fee

Back to the main point about the mockery of the article and the mockery of the fine. The government is not willing to forego the tax revenues generated from Johnson & Johnson and the indirect taxes generated mentioned earlier. This crime will continue because it’s essentially unpunished. Sorry, a $2.2 billion fine might seem like a staggering “what the?!?!”  amount to real people, but its just a line item on a cost-of-goods spreadsheet to the criminals. It’s essentially a “permit fee”. Pay the “fee”, after the action, and you are permitted to do this. The pharmaceutical company wins (from the extra revenue the crime generated) and the government wins (not only from the extra $2.2 billion check but the continued collection of the annual taxes that corporation provides). But the real people suffer.

It’s a double standard that is the result of the love of money. The fruits are there: the love of money is a root of evil. It’s evident in every form of government in this world – this is just one example. Makes this place (world) pretty scary. Conspiracies usually are.

After 92 years since its discovery, its interesting there is still debate about how Ewings Sarcoma cells come about. One thing that there is no debate on is that the marker of Ewings Sarcoma is a chromosomal translocation. But that’s only the marker, the way to identify ES.  How does one get Ewings Sarcoma? Why do the chromosomes change places? We are only Miette’s parents and not biologists but we still have a theory as to how she came down with Ewings Sarcoma, which I will put myself out there and get to in a bit. First, here’s what I understand about Ewings Sarcoma; I’ll explain it how it makes sense in my uneducated and non-college degreed brain… from a high level.

Cancer at the 30,005 Foot Level

Every cell divides. When that cell divides and a new cell is made, the new cell becomes “something”; whether it be a bone cell, a lung cell, a skin cell, an intestine cell, etc. You get the point.  With Ewings Sarcoma, that “something cell” should either specifically become a fat cell or a bone cell, which happens probably a gazillion-mabillion-quardroupleseptupabigzillion times during a life span. There’s a problem when that cell doesn’t become “something”. With Ewings Sarcoma, the cell division takes place, a new cell emerges but that new cell does not develop… it remains in a primitive state. It doesn’t develop because somehow two chromosomes swap places and results in a “mutant” gene inside the new cell. That “mutated” cell never develops to become a legitimate healthy cell. Instead, it just becomes a useless cell that takes up space. “So big deal, a new cell takes up space, duh” you might say. Well, this useless cell is alive and is developed enough to divide itself. It divides and now there are two useless cells. Each of those useless cells divide again. Now there are 4 useless cells. Again, you get the point. Without interference, these useless cells will eventually become more in number than the normal cells and they won’t stop dividing. As far as I understand, they don’t “attack” or try to destroy a healthy cell, they just take up valuable real estate inside the body. Left unchecked, the Ewings Sarcoma will take over enough space to render an organ (such as a lung) useless – resulting in death. A lot of times this “taking over” spreads to a few parts of the body at once and accelerates – not leaving much time to get rid of these “useless” cells. These useless mutant cells can divide at a much faster rate than normal cells. I believe this faster rate is because of that mutated cell having a greater number of insulin receptors than a normal cell. According to my understanding, a cell needs at least insulin to survive.

A major problem with some cancers in general, is this new mutated cell looks like a healthy cell to the body’s immune system. The immune system is blind to the fact that this cell is dangerous. It’s a very strange arrangement; humans can see a difference with the eye (with some dye and a microscope) but the immune system cannot differentiate this “bad” cell. Makes me wonder what the immune system does need to see in order for it to attack.

How Did Miette Get Cancer?

Obviously this question is bigger than what this post is going to get into. When a parent is faced with news that their child has cancer, that question is asked internally about 5,281 or so times. So I will just speak on the physiological side of the question. What physiologically happened inside her body?

Its our belief that Miette’s Ewings Sarcoma came about from her encounter with a sidewalk curb. No, I’m not saying sidewalk curbs cause cancer. As she decided to pop a wheelie as a way to go from street to sidewalk (like every kid on a bike has done), she failed to get her timing down and ended up crashing and hitting her shin on the curb. This resulted in bone chips from her tibia. The bone chips eventually “died” and according to her body’s immune system, became just foreign objects. Typically, the body would eventually push these foreign objects out of the body… much like a bee stinger or sliver. Unfortunately, in Miette’s case, the bone chips were still underneath the sheathing that is around the bone. This sheathing is pretty tough stuff and the body could not eject the chips out through it. So the chips stayed.

Now, Miette’s immune system was in excellent condition and did exactly what it was supposed to do and that was to surround the foreign object, aka bone chips, and encase it so the foreign object could not attack the other parts of the body while the body worked to push the objects out. So, what we saw on the outside of Miette’s leg soon after her injury was just a bump. But on the inside, the body was surrounding the dead bone chips like a big army and saying with a Bronx accent, “Yo, you ain’t goin’ no wheyuh” (that’s translated as “you are not going anywhere”).

When a body surrounds what it thinks is bad stuff and starts working to destroy the bad stuff, that’s called inflammation. So inside her leg, all this “war” and “red alert” stuff was happening to that area.

Because her body could not get the bone chips out and because her immune system was in good shape, it created a very strong barrier around the chips. To us, in our theory, this is where the mutation started happening. This encasement prohibited the nutrients needed for any cells trapped inside this encasement. The good cells that were trapped inside this encased bubble divided, as they should, but the new cells did not have any nutrients to develop. Somewhere in that non-developing process, chromosomes were translocated (this is where we can’t explain, even in theory, how that happens). The new cells were left in an embryonic or primitive state, if you will… and they stayed in that state… and they divided. Not enough nutrients could get in, but no cell could get out. We also believe, this encasement prevented her cancer from becoming metastatic. On one hand the encasement caused the cancer, on the other hand it held it in check. Again, this is our just theory and obviously hasn’t been proved. Call us what you want but its the only theory that makes sense to us, including the blank stare of the experts when we asked them.

Root Canals and Cancer

I actually do have a point to all this. I recently read an article that stated 97% of terminal cancer patients had root canals. The article references a study done by Weston Price about the effects of leaving a dead tooth (after having a root canal) in your body. In summary, the article and study said leaving that dead tooth causes a lot of havoc in the body… including cancer.

So here’s where I’m going with this. I know teeth and bones are not the same thing, but teeth DO have bone in them. Essentially, what I’m reading is that a root canal leaves dead bone in the body. Hey, that sounds a lot like Miette’s situation! Only, in this case, we’re not talking tiny bone chips. A body can’t completely surround these dead bones because, well, its a tooth and it can’t fully encase it. But what it does cause is inflammation. Then, when infection sets in around the dead tooth, then the body attacks that infection and causes more inflammation. Who knows what is happening at the microbiological level inside the body: white blood cells attacking infections while also trying to fight off this enormous dead bone which was once a tooth. Those white blood cells die off while new reinforment cells come storming in. Normal cells that get caught up in and around all this “war” still divide as they should. However, when this division takes place, there are these new primitive cells that are in the midst of all this pandemonium … it sounds like utter confusion and a real bad place for a new cell to be, given their need for nutrients to fully develop. Maybe these primitive cells aren’t able to fully develop before they divide themselves?

None of this is in the article – this is all just my thinking. I could be out in left field. I have had a drink tonight as well (with that marvelous Hawaiian Pass-O-Guava juice – YUMMO). But then again, maybe cancer starts in an unhealthy section of the body. The article certainly has merit in regards to the amount of bacteria the body has to fight when it comes to root-canaled teeth. The article’s cancer connection is merely an association at this point and much weaker than the bacteria connection, but believable and interesting to me. My main point is, since most biologists have no clue what causes cancer (and especially Ewings Sarcoma), maybe they should research and investigate the possibility that cancer cells start from a compromised part of the body, even if its small or appears harmless. Why did chromosome 11 and 22 swap places in Miette’s genes? I’m not saying its because of a root canal. But the concept is the same.

If anything, the article provides support for our theory about how Miette’s cancer started and opened my eyes to the negative effects of root-canaled teeth. It makes complete sense as to the unwise decision to leave a foreign (to the body) object in the body.

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?”

Cancer treatment hammers the body. Everyone knows this. If the cancer doesn’t kill you, the chemotherapy could. Kids fare better with chemo than adults, I think,  because they heal faster. However, regardless of the outcome, the ‘during’ treatment pains and aches are universal. When chemo agents are administered, the clock starts ticking towards low blood counts. White bloods cells, red blood cells, platelets, etc. Once the counts bottom out (the drop in counts stops), they start climbing back up. The first doses of chemo don’t cause as much of a “bottoming out” of the counts as much as the doses that follow. The body doesn’t have time to heal back to its original condition before the next chemo agent doses are supposed to be given. With each dose, the body takes longer to heal and doesn’t heal as much. Two of the counts that are closely monitored are the hematocrit (HCT or ‘crit’) and hemoglobin (HGB). Hematocrit is the volume of red blood cells in the blood. Hemoglobin are the metalloproteins that carry oxygen in the blood. The lower the HBG, the lower the oxygen in the blood. When these levels are lowered, people start feeling real crappy. They get grumpy, agitated, irritated, etc.

Chemotherapy and Blood Transfusions

To counter these low HGB and HCT levels, hospitals give blood transfusions. This is standard practice with chemotherapy treatment. It is nearly a guarantee that a person receiving chemotherapy will have blood transfusions, especially in pediatrics. Some kids receive a lot of them, depending on the treatment they are going through and how well (or not) their body is healing and replenishing itself. In speaking with the nurses at Sacred Heart in Spokane, blood transfusions are part of daily life with patients in the Children’s Hospital. I understood the concept of replenishing what the body needed to survive. But that concept is what I examined when the time came to sign off on a blood transfusion for Miette. What does the body need to survive? As I looked into that question I realized there was a debate brewing in my mind between what the body needs to survive and what the doctors and nurses want. In short, are blood transfusion necessary during childhood (or adult) cancer treatment?

“It’s what we’ve always done”

As Miette’s HCT number dropped and started approaching 20 and her HBG approached 8 the nurses and doctors said its time for a transfusion (A normal person’s HCT is in the 34-40 range and HBG in the 11.5-13.5 range). In the mainstream cancer treatment world, those two numbers (20 and 8) are triggers for blood transfusions. During her “week off” from treatment she developed a fever and mucositis and was admitted back into the hospital 3 days after getting out. Her HGB was at 8 and her HCT was at 20 and her numbers appeared to still be dropping. How far would they drop? No one really knows since everyone is different. One way to tell is to see how fast they are dropping with each blood test. When the number drops start to slow down and/or bottom out, you can assume they will start climbing at any time. However, I was approached about Miette receiving a blood transfusion. I have never been keen on blood transfusions to begin with, so I asked why does she need one now? Why at 20 and not 21? Why can’t we wait till 18? They gave two reasons: First, it will help her feel better; according to the nurses, most kids feel better after receiving a transfusion. They couldn’t answer what that “feel better” means, partly because they weren’t the ones receiving chemo. Second, they said its just what they’ve always done when the HCT hits 20 and/or HGB hits 8. Hmmm. Out of all the answers I wanted to hear as to why someone wants to inject someone else’s blood (which is essentially a soft tissue transplant) into my daughters body, “it’s what we’ve always done” wasn’t one of them. At all.

Back to the Studies

I did a lot of research with chemotherapy up to that point in Miette’s treatment but I hadn’t done anything on blood transfusions. So here we go. Blood Transfusions. Why? What does it do? What’s the history behind transfusions? What are the side effects? What actually is it (there are multiple parts to blood)? After my research, I found out that indeed these 20/8 numbers were trigger numbers, but that they were developed over 70 years ago and there has been no documentation as to how or why these numbers were picked. I determined that Miette was not going to get a blood transfusion because of these “magic numbers” and told the nurses not to administer a transfusion. Due to our previous history with the State of Washington and the Department of Social and Health Services, this refusal sent the red flags skyward, raised the terror level and nearly re-ignited the cold war. The hospital’s social worker approached us about this topic, asking why we don’t want her having a transfusion. This is the first step towards “working with the parents to come to a mutual understanding”. Or in other words, this is the first step in a process of giving her a transfusion anyway because parents only have so much say in their child’s treatment – and its not just regarding major decisions. However, we were going to exercise every ounce of “our say” in Miette’s treatment; push the envelope as far as it could go, just before losing custody of our kids. Making these decisions to question the “authorities”, knowing the potential consequences, is not easy. Knowing if something is bad for your child could be easy, but deciding to get in the arena with a red cape to face the raging bull (especially if you just questioned that bull’s authority) is a nerve-wrecking decision. Rather than re-write everything I explained to the hospital, I will just copy and paste the letter I sent to the social worker in response to her inquiry that sums up what this all meant.

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• http://www.ncbi.nlm.nih.gov/pubmed/7737942 (“…immunosuppressive effects associated with perioperative ABT might adversely affect overall prognosis in patients with a malignancy who undergo curative cancer surgery” (Miette will be having this done shortly)
• http://www.nimbot.com/Med/Articles/Journal%20Clubs/2006-10/Blood%20transfusion%20increases%20risk%20of%20post-op%20infection.pdf
• http://bmb.oxfordjournals.org/content/70/1/15.full (“Allogeneic RBC transfusions induce immunomodulation in the recipient.  As a result, the incidence of postoperative infections is elevated in transfused patients and cancer recurrence may be favoured“)
• http://www.ncbi.nlm.nih.gov/pubmed/14707558
• http://www.biomedcentral.com/content/pdf/cc2846.pdf

Towards the end of the week, Miette did receive a transfusion of red blood cells. The transfusion was only half of a regular “dose” of what the kids usually get to “feel better”. The envelope was pushed as far as it could, before the doctors finally gave me the ultimatum that they are going to give her a transfusion (without my consent). But they offered the half dose – this is why Sacred Heart was a much better choice. Give them some credit; even though the (CPS) threat was always there, they still actually worked with us. When they administered the transfusion, her HGB was 5.1 and her HCT was 14.5. Her counts went that low and where there for about a day… and she was still alive, alert (for the most part – she was on morphine) and awake. Even more so, she hadn’t eaten anything for the previous 4 days because of the mucositis in her throat. I imagine those counts could have gone a bit lower if she was eating normally; having food in the belly also “makes them feel better”. That was the overall message I got with the research and studies I read: the body can actually take more than what the doctors think when it comes to the HGB and HCT numbers.

Whew.

Needless to say, that was a tough week. Not only in watching Miette suffer from the chemotherapy effects, but once again the “threat” and going into battle mode to stay on top of our daughters treatment and maintaining our parental presence. One goal in my research about the different drugs, treatments or procedures the medical community wants to perform on our daughter is to not only make sure it’s absolutely in her best interest but also to show the doctors and nurses that our decisions are educated and thought out decisions. In this case, I knew more about the history, side effects and dangers of transfusions than the nurses did. Or at least what they led me to believe they knew. I’m assuming the answer of “it’s what we’ve always done” without any other explanation meant they didn’t really know.

Blood Transfusion Abuse?

So given the lack of evidence that blood transfusions are as beneficial as they are claimed to be, the question should probably be asked if too much blood is used for a purpose when it shouldn’t be? There are “blood shortages” all the time. Blood drives are happening a lot with desperation. The part that gets me is the large amounts of blood transfusions that happen on the oncology floors. I can see why there are shortages: because of this “magic number”. From what I saw and heard, transfusions appear to be knee jerk reactions at cancer treatment centers… all because of tradition! What if that “magic number” was lowered a couple points? The patient would not die (assuming our daughter is proof) but yet the amount of blood used would go down dramatically.

As stated elsewhere on this site, these opinions are just that… opinions. Obviously the studies are studies… but my interpretation of those studies and how they fit with my child are something I had to do for our family. That may not fit for your family. Each family and situation is different. I do encourage parents to research what their child is being faced with. You might come to the same conclusion as their doctor. With blood transfusions, for us, that wasn’t the case.

The Make-A-Wish folk had a professional media crew follow her around and make a video of Miette’s special day when the Silver Eagle Airstream was revealed. It can be found on Make-A-Wish’s YouTube channel but you can also view it below.