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….

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…


“She Has Some Neoplastic Cells” Part 2

What Dr. Cocheba took out of Miette was small; if I remember correctly it was about the size of a marble. He sent that to a pathologist, apparently as any doctor should do when pulling anything out of a body like that. When he got the report back he was devastated. The Cocheba’s adored Miette. They had a son her age as well. He said it was a very rough day for him as he tried to get a hold of us, back and forth on our cell phones leaving messages. He felt horrible to have to inform us of this. It’s not something a friend would ever want to do, but he had to do it.

Once the absolute acute shock wore off a bit, we called him later that night to get more information. He described what he knew about the neoplastic cells; Ewing’s Sarcoma. ESFT (Ewings Sarcoma Family of Tumors) looks like a small round blue (or purple) cell under the microscope.

Ewings Sarcoma Under Microscope
Ewings Sarcoma is described as a small round blue cell

It’s a very rare bone cancer. Dr. Cocheba said this form neoplastic cell its treatable with good numbers as of late. This of course, didn’t comfort us. There’s not much to comfort parents when they are listening to survival percentages being assigned to their children. Maybe it would be different if every time a family traveled in a vehicle we would be given survival percentages by a doctor; you have a 97% survival rate heading to your friends house. Dr. Cocheba was telling us 70% survival after 5 years. Well, what about after 5 years? What do you mean 70%? Are those 70% healthy? There were so many questions rushing in all at once. Trying not to suck Dr. Cocheba of all his knowledge was difficult. He let us know that he had already set up appointments for us the following week at Seattle Children’s (SCH) and has sent the pathology reports to the director of oncology at SCH, Dr. Hawkins. He explained the high qualifications of Dr. Hawkins and the surgeon, Dr. Chappy Conrad. He explained that he would take his child there if it was him. Coming from a doctor, that was convincing to hear. We asked how much of the bump was left; he didn’t know for sure. Dr. Cocheba took out a piece that was on the outside of the bone, so was there more on the inside of the bone? Was it anywhere else in her body? He obviously didn’t have any answers for us. So, after asking as many questions as we could think of, we made plans to come up and see the Cochebas after her scans the following week and ended the phone call.

My grandpa had prostrate cancer and it eventually went into his bones. That’s all I knew of bone cancer… that and the little snippets one reads in newspapers about this or that person passing away of bone cancer. Needless to say there was some internal turmoil going on. Our sweet little girl, healthy as a child could be, running and skipping and enjoying life, has cancer. That was a very, very tough pill to swallow.

The following week came and we headed to SCH. If I remember, the first thing we had scheduled was 3 scans: a CT, MRI and PET scan. We didn’t know what any of these really were in terms of how they were used to detect cancer. The CT only detects a certain size of tumor and the PET has its limitations as well. After the scans, we would have a consult with Dr. Hawkins to talk about what the scans showed. When we walked into the main lobby of SCH, it was overwhelming. It was packed. Tons of people walking around like a shopping mall at Christmas time. Lame kids, deformed kids, bald kids, mentally handicapped kids. No offense to those families at all, but this was the last thing one needs to see when being faced with a new trial like this. All these conditions coming at you all at once. Seeing one child suffer through a chronic condition is humbling enough. Seeing 15 of them walk past you in a 5 minute period brings one to the verge of collapsing in horror. But we also had our own child with a condition now. It’s amazing we made it through that day without falling on the lobby floor, sobbing. We saw plenty of parents who looked like they wanted to do the same.

Miette, of course, was completely unaware as to what this all meant. She knew her bump needed help to go away and that’s what this was all about. We needed to take “pictures” of her leg. It was a fun trip to her. We got to stay in a hotel with a swimming pool and a nice view of the Space Needle. We weren’t ready to tell her anything about cancer, by any stretch of the imagination. We didn’t even know much ourselves at this point.

We checked in at the Radiology reception desk and waited. When they called Miette’s name, we headed to a room where they would prep Miette for the scans. They needed to ask us a gazillion questions about her health history and then put an IV in her elbow. We weren’t sure how Miette would react to the IV but she did absolutely wonderful. Didn’t cry, didn’t flinch… nothing. Whew.

Miette at Seattle Children's Hospital
Miette was smiles, due to ignorance. Ignorance is bliss.

The process would be as follows: She would be taken down to a sealed concrete or lead  lined room to be injected with the isotopes for the PET scan. She will then need to be very still for an hour (Yes, Miette needed to be still for an hour). Then she will be taken to another room where they would sedate her. Once sedated, they would perform the 3 scans. After the scans were done, she would be taken back up to the original room where we will be waiting for her. The nurses said she should be awake within 90 minutes after being sedated. Miette was all smiles, until the sedation took effect and off to sleep she went, so suddenly. The sedation was a very hard thing to do emotionally. Not sure why, but its a very uneasy feeling. Seeing her hooked up to so many tubes and wires was difficult. Our little girl, all hooked up. Ick.

To be continued…

“She Has Some Neoplastic Cells”

We will attempt to describe our struggle to find alternative or at least complimentary (to chemotherapy) treatment for our child newly diagnosed with cancer (neoplastic cells), in a series of posts telling our story, up until treatment started.

Back in February of 2012, when I was able to sit down at work for a brief moment I checked my voicemail. There were two of them from our doctor friend who helped try and take care of Miette’s bump on her leg. We knew he sent off what he took out of her leg to pathology but we really didn’t think much of it. I figured he was calling to let us know what they found. I did think it was odd he called twice within a short time frame. The second message said something about “more work to do” and to call him back. I called him back, concerned but still not ready for what I was about to hear.

“She has some neoplastic cells”. Neo-what? I was at my computer with Google already up. A search for “neoplastic” resulted in Neoplasman abnormal mass of tissue as a result of neoplasia. Neoplasia is the abnormal growth or division of cells. Oh crap (to say the least). This was one of those moments where all the noise around disappears, tunnel vision starts to set in and an odd stand still happens. I can’t really describe it more than that.

More coming…