Category Archives: Childhood Cancer

We will attempt to talk to about our 5 year old daughter’s battle with cancer in 2012 and describe our experiences with the medical industry. We will also explain some of our decisions, share what our thoughts were at the time and share our research into different herbal, supplemental and pharmaceutical treatments. We hope other parents that are finding themselves facing the same challenge can benefit from our walk with this horrible disease.

NEOPLASTIC CELLS (EWINGS SARCOMA) – PART 4

So the story left off with us hightailing it out of Seattle Children’s hospital in Seattle. Miette was glad to be out of the hospital, even though we think it was all an adventure to her. Little did she realize at that time how much she would come to despise hospitals. We went back to the hotel and a little after that, Miette and Kelly went swimming. She was looking forward to it all day.

Not showing the extreme worry on your face, to your cancer stricken child, so they can continue to have fun was going to be a huge challenge from now on. We had yet to tell Miette what she had and what it meant. She still only knew that she had a bump on her leg that needed to go away. She didn’t know the severity or the impact that it has on people. As her parents, we were in crisis mode – and reminded of it every time we looked at that bump on her leg. As Miette, it was just another (but different) day and some swimming fun.

Hitting the Cancer Treatment Books (or Clinical Trial Studies)

Once we got back home, the most important project I have ever undertaken started. Cancer research. Cancer treatment research. It sounds simple. It is anything but simple. In order to understand the treatments, one must understand the cancer. In order to understand the cancer one must understand the human body.  What is the cancer doing? Where did it come from? Why can’t it be stopped? Why doesn’t the immune system just fight it? What really is “chemo”? When did they start using chemo to fight cancer? Why does chemo kill cancer cells? Why is it called Ewings Sarcoma? What makes it different than other cancers?

Tons of questions. Too many to list. Biology and science; the two topics I wish I had paid more attention to in school. I believe, in schools today, teaching kids about the human body to the detail they teach math and English for the sole purpose of getting them ready to fight cancer should be high priority. The name of the class should have “cancer” in it. They will fight it, someday. Either for themselves, for their kids or their parents. At some point in everyone’s life, cancer research will happen. It should required in one’s senior year of high school so it will be as fresh as possible. Understanding the research, understanding the writings of study papers and clinical trials is so much easier with an educated background in biology. That education will be more valuable, by far, than say Trig, or the solar system or a foreign language. I took German  in high school. I never used it after that, but I had to a take a foreign language class; it was a requirement for graduation. If I was required to take a class that helped me get a head start of understanding what cancer is and does, I would be much better off and equipped to handle “life”.

Initial Alternative Cancer Treatment

But back to our story. Hours of research turned into days… and then weeks. We didn’t like the unknown of what was proposed to be put in our daughter’s blood stream. Maybe we dived in backwards, but we started researching chemo agents first. I will get more into that research later. At the same time, we began searching for a naturopath that would assist us with helping Miette and begin to build our team of doctors. We were referred to a doctor in Spokane, Dr. Latitia Dick (Windrose Naturopathic Clinic). We spoke on the phone and decided to take Miette up there and do an initial evaluation. We took the first open time slot available. The person who referred us to “Dr. Tish” was a recent Bastyr University graduate so we felt it was a good lead. She is a second generation naturopath and had the education and background to support her practice.  At Miette’s evaluation, Dr. Tish first went into diet/food intolerance and the changes we could make. We already were pretty organically and whole food minded so there wasn’t  a lot of changes. We made a point to cut out as much fruit and sugar as we could. We also started Miette on what is called Constitutional Hydrotherapy to kick start her body’s defense mechanisms. Our primary goal, before deciding on any conventional treatment (chemo) was to build up Miette’s immune system as best we can via a regimen of herbal and vitamin supplements and the hydrotherapy. If natural treatments also made a dent in the tumor, then even better. Miette’s tumor was a slow growing tumor. We were hoping to slow it even further. The ongoing treatment plan that formulated after a couple visits to Windrose was hydrotherapy twice a week (this means two trips to Spokane each week) and the following list:

  • Triton MRL
  • Natrum Sulphuricum
  • Natrum Murr
  • Iodoral
  • Thymus PMG
  • Drenatrophin PMG
  • Eleuthero Root
  • Vitamin D 4000
  • Fish Oil
  • Symphytum 30c
  • Comfrey poultice

Each one of these has its own benefit. Not all are attributed to directly fighting cancer. But they ALL attribute to the immune system, strengthening Miette’s body and getting her ready for the fight of her life. As you can imagine, this list, which needed to be replenished about every 30 days wasn’t free. Conventional cancer treatment is virtually “free”, as long as its a child. I say virtually because there’s still insurance deductibles, the cost of trips back and forth, lodging while staying in another town for treatment, healthy meals (organic and whole foods), etc. Natural treatments such as this list is ALL out of pocket. Alternative cancer treatment such as this is frowned upon by conventional minds. The FDA, NHI, ACS, Hospitals, etc and all insurance companies are conventionally minded to say the least. I won’t go into a rant about the money aspect of this conspiracy right now (I will do that later) but I will say giving Miette the BEST chance of overcoming this was at a huge financial cost, one of which we are still struggling to overcome; as every family who has ever battled cancer could testify. Going with conventional only would have been cheaper. But we knew that wasn’t an option whatsoever. We were going to go into debt to whatever degree it took.

Constitutional Hydrotherapy
Miette During a Hydrotherapy treatment

Thankfully we had friends in north Spokane who let us stay with them during these twice per week treatments. It takes a village to raise a child and it takes a village to battle cancer. Thanks to them and to all those others who helped us along the way. We hope we never have to repay anyone in the same way.

We went with this treatment, starting towards the end of February and went with it until chemo treatment started at the beginning of May.

So, while this immune system build up treatment was going on, the chemotherapy research was happening at the same time. Let me tell you how disturbing that process was… well, I’ll tell you in the next post.

To be continued….

Blue Bunny Make-A-Wish Video

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 :)

Airstream in snow
The Silver Eagle in white.

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.

Neoplastic Cells (Ewings Sarcoma) – Part 3

The last post I wrote, telling the story about our journey with childhood cancer, ended with Miette’s smiling, yet nervous face suddenly falling asleep in the scanning room. Lisa wasn’t in the room, she was with Brier in the waiting room. I went into the scanning room with Miette to stay with her until she was sedated. I mentioned the uneasy feeling about seeing and experiencing this part. It was just me and her. I was trying to keep things light with her, smiling and joking, taking pictures of her… but on the inside I was scared as all get out. One of the hardest, hardest, HARDEST parts of being a parent is staying emotionally collected during times like these. I realized I had to; there was really no choice. If Miette saw how scared I was, then that would be a horrible thing to do to her. The amount of strength it took to stay calm for her was more than an entire day of playing ball, but it was all within those 10 minutes of her getting connected with wires and ready for sedation. Once Miette’s eyes rolled in the back of her head and the nurses closed them, I kissed her on the forehead and whispered my love for her. They said they’ll take good care of her and I left the room. I had already started failing to contain my emotions almost immediately after she went to sleep. By the time I left the room I was a mess. For some reason, the reality of what was happening came rushing in. I was standing in the deep sublevel bowels of a children’s hospital, white hallways every where, not knowing which direction I was supposed to go; nurses, doctors and equipment were all around… we were now a part of ‘it’. The ‘it’ being the nightmare. Our beautiful child was in the hands of strangers. Those few minutes of being alone were very, very dark minutes.

A nurse showed me how to get back to Lisa and Brier. From there we decided to try to go eat something. We looked through the gift shop a little bit after eating, trying to kill time while Miette was still getting scanned. We came back to the room where Miette was prepped and waited a bit longer than we were told for her to be brought back. They rolled her in while she was still sedated and explained to us how should would probably wake up. She had a breathing tube in her mouth and it might need to have assistance coming out when Miette started to wake up. About 15 minutes later she started waking up. She was very groggy but started to quickly come out of it. She saw us and dozed in and out for a few minutes. A Child Life Specialist (someone who helps talk to kids and helps parents while they are visiting the hospital) that met us when we first came in that day showed up. She started interacting with Miette. Around that time, the co-chief oncologist, Douglas Hawkins, came by and said he had the results of the scans.

The Doctor Shows Us the Scan Results

Oh boy, here we go. This was where the rubber meets the road. We didn’t know much about Miette’s cancer but we did know metastasis was NOT something we wanted to see. We didn’t have any idea if the cancer was elsewhere. Was it all through her leg? Was it in her other leg? Was it in her lungs? Was it in her brain? Was it all over? Dr. Hawkins walked us to a computer sitting just outside the room. He logged in and brought up some images. He started flipping through images that didn’t mean anything to me. Then I saw two legs. It was the MRI of her lower extremities. Two legs. One with a white blotch on it.

There it was…. the tumor. The cancer. The thing that builds hospitals. The round growth that brings in cranes and steel and large excavators and employment and parking garages… that small (compared to a hospital) round thing on her leg. It has changed our lives completely. It changes millions of lives every day.

Ewings Sarcoma tumor on MRI
One of the most scariest images a parent will ever see.

It was a bright white compared to the rest of her leg. It was obvious. Something you could see from across the room. It was just a white splotch on her leg.

It was the scariest thing I have ever seen in my life.

Knowing that this round white growth was alive was a very creepy feeling. Like some evil thing was in the room… watching you. I just stood there looking at it for what seemed like an eternity. Dr. Hawkins was zooming in and out and changed to a different slice to show us the extent. He gave us a size: 2.5 cm. Then he started to look for the PET scan. The PET imaging showed how active the tumor was and if there was cancer anywhere else. This was the part we’ve been anxiously waiting for; has the cancer spread? He brought up the PET scan imaging and… no metastasis that they could see! It was just the tumor on the leg. I remember Lisa grabbing my hand and squeezing. We found ourselves having a mini, quiet, internal celebration.  There eventually would be many more of these “little victories” throughout her treatment. I never realized how important these little victories would be. If you’re in this situation, go after those little victories. The goal is to get them to add up.

Dr. Hawkins brought up the CT scan images as well and said the lungs looked good and confirmed that there was no cancer in the lungs. At this point we started asking some questions: Was the cancer inside the bone? The answer was, no, not that they could see. How active was the cancer; how aggressive?

Ewings Sarcoma PET Scan Imagery
The PET imagery shows the tumor (circled in green). The brighter the red, the more active the cancer.

He brought the PET scan back up and told us the SUV rating on tumor was at 1.7. The SUV rating is also referred to as the FDG Uptake. FGD Uptake is considered the rate at which a cell consumes glucose. In my understanding, with a PET scan, Miette was essentially injected with nuclear glucose. The equipment that is used to scan for cancer actually detects nuclear isotopes that are attached to the injected glucose. The more a cell consumes the injected nuclear glucose, the more isotopes are collected in that area. Cancer is hungry for glucose more than most cells, so this is how the PET shows cancer. The isotopes show up on the scan as anything from dark maroon, to red, to yellow and then to white (low end to high end). Miette’s brain was bright white with bright yellow on the edges. The brain devours glucose more than cancer, as it appears – at least more than Miette’s cancer. Dr. Hawkins said this 1.7 SUV was on the low end, which was good – the lowest he has seen was a 1.5. The higher the number (and the brighter the spot, which Miette’s was not bright), the more active and aggressive the cancer cells. He said the average SUV rating for Ewings Sarcoma was around a 5 – little victory. The high end would  be anywhere from 12-15.

Let’s Talk Treatment

After the review of the scans (about 15 minutes worth of review) and having a better understanding of what was going on inside Miette’s body, Dr. Hawkins brought us into another room while the Child Life Specialist (Sarah) stayed and kept company with Miette. Also joining us in our initial discussion about Miette’s treatment was what’s called a “social worker” employed by the hospital. This was not a DSHS social worker. This immediately raised flags with me and was the beginning of what would be an “awakening” to the dark, scary side of the medical establishment. A children’s hospital may have a lot of whales, dolphins, pretty murals, cute animals, a positive as can be design with large daylight windows and smiling faces… but underneath all that, in the bottom floors, where the gears turn and hidden inner workings of the visible external “friendship” reside is where we found ourselves at that moment. Only, we didn’t know how big the gears were. We didn’t know the extent, so we still had a bit of naivety.

So there the four of us were. Lisa, myself, Dr. Hawkins and the social worker (I apologize, I can’t remember her name). The social worker introduced herself and said she was there to help us, answer any questions and provide any resources we might need.

Yeah right.

Dr. Hawkins handed us a document with the treatment plan. It had the Seattle Children’s logo, but was from the University of Washington Department of Pediatrics. It starts off with “Your child has recently been diagnosed with Ewings Sarcoma”. I immediately thought this to be odd. My initial internal reaction was “Wow, they know exactly what they are going to do, even though we just found out the extent of the cancer”. For some reason, this didn’t compute. How could they know what to do before knowing what the situation was? This was the first time I felt like we were on a manufacturing line and that we’ve been there the whole day and didn’t even know it. I felt stupid that I didn’t recognize it. I understood everything was scripted since it was a day of scans, but now the treatment was scripted as well? They had this document printed out for us before we even arrived in town! In hindsight, this was the beginning of my realization that all cancers are grouped into treatments. I understood different cancers had different treatments, but as someone who never had to worry about it, I figured when someone was diagnosed with cancer, the patient sat down with the oncologist to figure out what to do next and what the best treatments would be, based on that person. Not the case. We were presented with a treatment based on Ewings Sarcoma, not Miette with Ewings Sarcoma. This was the beginning of trouble for us, though we didn’t fully grasp the extent it would end up being.

Let’s Start Tomorrow

Dr. Hawkins reviewed the treatment plan and said Ewings Sarcoma has a very favorable prognosis of a 75% five year survival rating. It used to be very low up until the 1970’s and 1980’s. Most kids died of Ewings Sarcoma before that – I think the number thrown out was under a 20% five year survival. Dr. Hawkins talked about the progression of surgery along with chemotherapy for a major reason why the rates increased. He stayed positive and confident that Miette would be with us in five years. Of course, we went to the side effects section of the document and starting asking about them. He agreed that there were some bad side effects and that chemotherapy “wasn’t pretty”. He didn’t go a lot into the side effects outside of what was on the document. He stayed close to the document and didn’t provide a whole lot of information beyond it. The next statement took us by surprise: He said he would like to start treatment tomorrow. Excuse me? Well, more accurately, he would like to put the port in Miette tomorrow and start treatment the day after that. He said this is what nearly all families do; start treatment immediately. Wow. We didn’t hesitate for one second to say no. No way. Really? People just start without thinking about it? Without a second opinion? We were scared of cancer, but we also knew to be scared of chemo.

We Will Work Together With You

So, we declined starting treatment immediately and explained we’d like to go home and think about things. It had been an extremely difficult day and difficult week. He was OK with us needing time to think about it and promised us that “they are here to help us and work together with us to make sure Miette has the best chance to come through this”. Ok, we thought, cool. We’ll go home, research the treatment and find a naturopath to work with. We knew going into this that chemotherapy would be the treatment that the hospital would recommend. However, this was completely contrary to our way of life, regarding healthcare. Allopathic care was not in our bag of tools. But we still understood cancer enough to know chemo was on the table, even for us. We asked if his team is open to working with a naturopathic doctor, since that is our philosophy on healthcare. He explained as long as it doesn’t interfere with the chemotherapy’s effectiveness, then yes. We asked about what the hospital and treatment intended to do about nutrition. Dr. Hawkins said we would be assigned a nutritionist. That’s it. That was the extent of treatment outside of chemotherapy – a nutritionist. We were not impressed.

We left the meeting feeling a little better (not really, but its hard to explain – little victories) about Miette’s situation – knowing the cancer hadn’t spread and that it wasn’t as aggressive as it could have been – but still scared (as you know what) about our daughter having cancer. We were also beginning to sense an uneasy feeling with what we now call “the establishment”. It was only Seattle Childrens back then. Now, with more understanding, we realized it is a whole lot more than just one hospital. Of course, it was February in Seattle; overcast, light rain, dark trees, cold – you get the picture. Dark and gloomy and our child had cancer. We were still numb and probably pale faced by the time we left the hospital doors. But we got out of there as quick as we could once Miette was fully disconnected and fully awake. We weren’t going to spend one extra minute there.

To be continued…

 

Government’s Pharmaceutical Permit Fee

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.

Profile

Arsonist

Johnson & Johnson

Annual Income (2006)

$50,000

$11.1 billion

20% of income (one time ‘post crime fee’)

$10,000

$2.2 billion

Income from crime over 3 year period

$23,000*

$5.1 billion

Net income from crime

$13,000 over 3 years

$2.9 billion over 3 years

* $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.

Root Canals and Cancer? You’re Crazy

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”).

A bump on the outside was a microbiological warzone on the inside.
A bump on the outside was a microbiological warzone on the inside.

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.

 

Hey Big Pharma… U Mad Bro?

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?”

Blood Transfusions

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.

***********************************************************************

Blood transfusions and the benefits of it haven’t been studied very much in randomized controlled studies. In fact, there has really only been one comprehensive study done (TRICC in 1999). That study showed that the need for transfusions was not as great in determining recoveries as they are stated to be. The practice of transfusing based off a number (HGB under 10-11, Crit under 20-21) is a 60-80 year old practice (depending on what document you read). This practice has been handed down throughout the generations without any scientific proof that it is actually beneficial at certain times.
 
Blood transfusions are also not without dangers AND side effects. Blood is screened for major viruses but they can’t screen for everything. The chances of getting a virus from a transfusion is greater than vaccinations, even for the viruses that are scanned for. One of the side effects is a fever. If Miette would get a fever then that’s an automatic admit and stay for a few days. If that were to happen, then chemo would be delayed anyway (one other reason for transfusions is to keep on a compressed chemo schedule). Another major issue I have with them is they are immunosuppressants. Her immune system is so suppressed as it is, why would we want to suppress it more, just so she “feels better” for a couple days. When it comes to Miette, I look at everything as a risk vs reward. I know the hospital staff may not be used to a parent who wants to be as involved as I like to be; to questions things and ask “why”. They are professionals though and I believe without a doubt they can handle it as much as Lisa and I can handle our child going through all this. When I started asking “why” about blood transfusions and started researching to find an answer, I realized its based more on tradition than actual studies and that concerns me with regard to my daughters best interests.
 
My issue is not that we don’t do transfusions but only do them when it’s truly life threatening… not based off a number. Miette’s color was fine considering her counts this week. Her behavior was acceptable at home (Vicki stated she was grumpy when being accessed. She gets pissed when being accessed when her counts are sky high too so that’s not a factor in this). Lisa said Dr. Judy even said she looks decent. As Miette’s concerned father, I believe the risks of a transfusion (based off evidence from the medical community) when its not ABSOLUTELY necessary (aka, based off a traditional number) is not worth the benefit.
 
I have included some interesting resources for reference about transfusions if you care to check up on my statements, which you should do :) There are many more references out there, these are just a few.
Based off these reports about transfusions, I personally pose the question as to whether the 25% recurrence rate of Ewing’s Sarcoma could be tied to the amount of transfusions the patient received. Maybe a study should be done to restrict the amount of transfusions and see what the recurrence rate is of that group vs those with normal transfusions. The Transfusion Requirement in Critical Care Trial  (TRICC) showed that people with a more restrictive transfusion rate fared better in ICU recovery than those with more liberal transfusion rates. I just question the relation to cancer survival rates to blood transfusions.
 
Anyway, those are my reasons. If Miette was in danger of her life, I would not refuse a blood transfusion.
***********************************************************************

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.

Disclaimer

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.

Cannabis, Chemotherapy and Appetite

Even though he doesn’t get into the relationship directly between cannabis, chemotherapy and appetite, Dr. Sanjay Gupta and CNN did a small documentary on the health benefits of cannabis (I linked to it at the end of this post). The understanding that cannabis has very good health benefits is nothing new to those who have actually been forced (due to health conditions) to research the use of cannabis. But for those who haven’t looked into it and are still of the 70 year old mindset that it’s just for stoners… well… take a look. The story of it helping a little girl is very neat and hits close to home. The story is mostly about cannabis used for targeting specific health issues such as seizures and pain, but there are other indirect health uses for it.

Chemotherapy and Appetite

During our daughters cancer treatment involving an aggressive cocktail of 5 different chemical agents, cannabis may or may not have been used to help with Miette’s loss of appetite (there’s nearly a nearly 100% chance that those receiving aggressive chemotherapy treatment experience this side effect) by putting a half of a rice grain size bead of such oil on a Hershey’s Kiss. We understood that Miette’s body needed nutrition to help restore what the chemotherapy destroyed. Every kilogram of protein, potassium, iron, calcium, etc (at the strategic times, of course) was so extremely important to stay “ahead of the game” and not have to play a hopeless game of catch up. Chemotherapy annihilates the digestive tracts ability to absorb nutrients. It causes extreme diarrhea. It also causes extreme nausea since those fast growing cells in the digestive tract are being killed. The killing of the inner membrane (the carpet like fingers called “villi“) of the digestive tract also inhibits the tract’s ability to absorb any food that ends up getting there and thus, get it in the blood stream… IF the patient can even get over the nausea! Again, the idea is to literally stay ahead of the chemotherapy effects. Prepare the body by building up the strength of the blood, the organs, the immune system, etc. Then, when the chemo agents starts killing off the villi, the “hit” won’t be as bad as it would’ve been if the body wasn’t prepared and built up.  Since the villi won’t be as badly damaged after a round of chemo, the villi can absorb more nutrients into the blood stream and help the re-building process itself and every other part of the body that WILL get damaged. The more research one does in how to combat cancer and chemotherapy agents, the more one will realize it all centers around the gut. It’s the front door to the body’s immune and healing system. If it’s closed, the body closes.

Poison

Don’t forget, chemo is literally poison. I’m not just saying that out of my dislike of chemo; it really is poisonous. You will hear me say this over and over… chemotherapy treatment is a process of killing the entire body. The modern medicine idea is to control that slow death and stop treatment just short of fatal doses. Concentrating on making sure the gut is doing the best it can will only work for a while (but that “while” is crucial to increasing the patient’s chances of succumbing to the chemotherapy). Eventually, the poison will overtake all the work one put into keeping the digestive tract as properly functioning as possible. The unknown is when will that overtaking happen? The chemo will be destroying the body faster than the body can heal… and that’s with doing everything correctly on the nutrition and natural medicine side. The “numbers” (the bloodwork numbers that show the condition of the blood and the immune system – aka, how much is the body still alive) get harder and harder to bring back up after every dose of these drugs. The more aggressive the treatment plan the faster this happens. The hope is that the cancer is gone before the chemo agents put the body into failure mode. So very thankfully, for Miette, the cancer was resolved before that happened and we were able to cut short her treatment as well. It’s nasty stuff.

Cannabis and Appetite

So back to appetite. Keeping the nausea down is crucial. There are pharmaceuticals that they give to chemo patients that are supposed to help with that (even though one of the side effects is nausea). Miette was given those drugs. She also, more or less, quite possibly, may or may not have, with any amount of uncertainty,  undeniably consumed some substance that could or couldn’t quite have possibly been cannabis – if that wasn’t what it ended up not being. But whatever it was or wasn’t, her appetite increased after possibly consuming it; even with nausea. That’s the key, being able to EAT when feeling nauseous. She still threw up at times, but she was still hungry and it helped keep her body ahead of the game.

I’m not knowledgeable of the scientific reasons cannabis increases appetite. I haven’t dived into neuroscience yet. I do know no one has ever died from cannabis. I do know the side effects of cannabis are 99% less than that of drugs like etoposide or doxorubicin and the like. But if there’s something that has virtually zero side effects and it increases appetite at a time when eating was never so important then I’m all ears, even for my 5 year old… and you should be too.

Here’s the video. Watch it.

https://www.youtube.com/watch?v=dy_OfmEXTm4

Patient Invested Physicians

We were in a good position in a sense that we were friends with a doctor.  He knew her, was close to her, cared for her and was invested in her more than any other doctor Miette would end up seeing. I believe that’s one of the real downfalls to modern medicine: patient investment. We read too many studies and heard of too many stories about children dying from treatment. Most of the time the pediatric physicians aren’t present when the death occurs even though they were in the office. The children just become a statistic at that point. When the child dies, the doctor has to separate themselves from that death. How else could doctors keep doing what they do, after seeing death after death? They would become even more numb to deaths more than they already are. But that’s the real issue; maybe they shouldn’t separate themselves? They are dealing with life and death. I don’t want our daughter’s doctors to have a barrier between Miette and themselves since potentially harmful decisions about her health become easier to make. Just give her this drug to counter that side effect. Wait, wait, wait… if there was a real investment in Miette, like Dr. Cocheba had, would that drug get prescribed?? Maybe an extra 15 minutes of anxiously considering our daughter and their dear friend would show that decision to be unwise after all. But one could say that if doctors were closer to their patients and didn’t protect themselves from death after death by putting up a barrier, then they eventually would quit from the personal turmoil or depression. I say maybe that’s not a bad thing. Maybe there are too many physicians? Maybe less physicians with greater investment in their patients would equate to a healthier society and in turn, less death. The old “quality over quantity” argument. The way it is now, most of the time the doctor administers over a treatment and if that treatment results in a death, the parents are left to clean up the traumatic and chaotic mess. The doctor goes home and has dinner with their family, watches a sitcom and goes to sleep, while their patients family is left with a huge irreplaceable void. If the doctor was invested, they would be there when the death happens, be outrageously concerned as any friend or family member would and be traumatized as much. Then, the next time the same decision must be made with another patient, they might remember the pain they felt, dig a little deeper for a different treatment rather than giving the same treatment. I guess the term that comes to mind is “trigger happy”. Because of this lack of personal patient investment, its way to easy to just press whatever button the book calls for. Maybe we’re ignorant to it, maybe they disguise it really well, but it doesn’t appear a physician has enough pain when their patient suffers catastrophic results from their prescribed treatment.

Back to having a personal friend as a physician, we could bounce things off him and get a very real and honest first, second or third opinion. We knew it would be a quality opinion, regardless of personal beliefs of medicine (allopathic vs. naturopathic) because if the opinion was a bad one and we acted on it, he couldn’t escape the outcome of that opinion. Again, I would assume it’s a very heavy burden to carry as a physician when handing out healthcare advice to friends and family. It would take a very special person to become and to stay a physician.

When a parent’s child is newly diagnosed with cancer, finding a quality pediatric oncology physician, one who is willing to invest in that child is extremely difficult. Don’t get me wrong, Miette had a good oncologist. She was cooperative with the natural treatments from our naturopath and didn’t discourage or put up a fuss about it. She didn’t get bent out of shape when we did research and questioned prescriptions and treatments rather than just “going with the flow”. But she wasn’t invested. The only time we saw her was the 10-15 minute checkup each day during treatment. A doctor just can’t become invested like that. Most children’s hospitals are jam packed and the oncologists just don’t have time to get invested. Again, this gets back to quality vs quantity. If you find a doctor like ours, then you’ve done well. If you find a doctor like Dr. Cocheba, a personal friend, then you’re in a very good position. One thing to always remember as a parent with a child going through this horrible disease (or any other disease requiring heavy use of the medical industry); you, as the parent(s), are that child’s defender. They are essentially helpless in the medical world and are depending on you to make the best decisions. If the oncologist you have isn’t a good fit, your child will either not know it or not know how to express that something is wrong. It’s up to you as the parent to be able to tell what is working for your child’s health based off a number of factors. It takes a lot of time, hard work, research and oversight of everything going on. Physician is a profession. There are those who are good at it but don’t forget there are those who are BAD at it, just like mechanics, financial advisers, police officers, teachers, scientists, engineers, etc. There are those who are not good at their profession. Not everyone who is a physician should be a physician and its up to the parents to come to that realization (and not be afraid to come to that realization) and act accordingly; the young child just can’t.

We assembled a team of physicians that we were, at the least, very comfortable with (Miette’s nutrition physician, Dr. Donovan was at The UHC in Seattle – nutrition isn’t something the allopathic world knows much about). It wasn’t perfect though, primarily due to geographical distance. We weren’t comfortable with the initial team, which is another post for another day.