It’s been a while, a long while since a last post to the blog. I’m (Kelly) opening up a bit on this one…
If anyone would like to know what goes on in a dad’s head when it comes to the pressure of bringing up cherished babies in this world, feeding them, nurturing them, maintaining an income to keep up in this country, having the funds to keep them healthy, fending off Caesar and his CPS, fending off cancer, etc… listen to this piece posted below, by Hans Zimmer. This piece describes what I feel being a father, tasked with a very, very important job. Listen to it with headphones on… listen to it loud – because it’s loud and intense in my mind… close your eyes and concentrate on the movements of the instruments, especially the first two minutes. Concentrate on the intense stress of knowing that it’s all a race against time and that time is very quickly running out (our life is a vapor). Concentrate on the music while thinking of the pressure of providing the income, paying the mortgage and electric bill, making good decisions for a family – knowing that bad decisions could be devastating. Think of the task of protecting your family from and fending off the evil forces surrounding us; knowing the evil is intent on the destruction of the family. There’s a job that needs to be done, and done to near perfection – there’s little room for mess ups. The wrong mess up and it all comes crashing down. So many people you want to make happy. So many delicate hearts to be careful of hurting. So many fears to face and push through. So much pain to endure. Failure always nipping at your heels. The spiritual war is real. The physical life is fragile. The stakes are exponentially high.
And do it all while showing a light hearted smile, a kind heart, obedience to God, being a decent dad, being a decent husband…. and finding the strength to not collapse under the pressure.
I’m not saying this is constantly playing in my mind or any other dad’s mind, but when the pressures come, when decisions need to be made, which is often, all the above hits all at once and this tune starts up for me. I think Hans Zimmer did a fantastic job at describing the intensity of being a dad and husband in the modern times through this piece, even though that wasn’t his purpose in writing it.
Don’t bother to listen to it if music doesn’t move you – it’ll mean nothing.
Back in July we headed to Florence for a 50th family reunion and to get Miette and Brier to Florence, since its been so stinking long since Miette has been there and Brier never has. We stayed at the Thousand Trails in Florence. The campground is couple minutes south of the Siuslaw River bridge. Its on the same road that goes to the Dunes recreation area.
Overall, the campground was good. Tall pine and fir trees, lots of shady sites (actually, most of the sites looked shady). The downside to our stay and our bad electrical connection. The Airstream was giving a slight shock to us. After a couple hours of troubleshooting and by process of elimination, it turned out to be faulty campground electrical. We didn’t have an electrical tester, but the folks who tested it just after we pulled out and the end of our stay tested it and kept on moving. We kept the Airstream unplugged instead of moving because we were next to family and it was a such a large and shady spot.
The campground was at a good location. There was no ocean views and wasn’t accessible to the ocean by foot, unless you wanted to walk for an hour or two. But it was only a couple minutes out of town. One thing I’m not digging about the Thousand Trails is the dusty gravel roads they have. These campground are old (obviously, the electrical is old). If you have a clean rig and RV going in, you will not going out; at least in the summer time. It’d be nice if they could spray the roads to keep the dust down. The loops are kinda tight for a long setup, especially if the neighbors aren’t being real careful about parking their rigs; some weren’t leaving a ton of room.
The amenities weren’t great. The pool was a pool. Nothing special. The lodge wasn’t anything to write home about. But there’s enough to do around the area that made this a non-issue. These aren’t really “resorts”. If you have that mindset going in, you won’t heading out. Its just a good, private place to park your RV for a few days. The bathroom facilities were decent but not as nice as Little Diamond (Newport, Washington). The staff wanted me to wait for them to clean before I took a shower. I politely said I’ll only be 5 minutes and they could start in the meantime. So there’s a lack of customer service issue that seems to be a theme with Thousand Trails, at least the two I’ve been to recently. There was also some sort of confrontation between two staff members. Sounded like someone was getting fired and the one being fired wasn’t having it. “Give me your key and radio” was repeated to a guy replying with “are you firing me? Are you firing me?” and so on. A little awkward for the guests to encounter when trying to just check in.
We took the Silver Eagle up in a northeasterly direction to meet up with Shilowe and Dave at the Thousand Trails Little Diamond campground last weekend. It was the first time getting the Airstream out in the woods since last year at Cascade Peaks near Randle/Packwood; that too used to be a Thousand Trails.
This trip was hot. Over 100° leaving Tri-Cities. Over 100° on our way there. Over 100° on Saturday and Sunday. Monday brought some light rain in the morning which was such an awesome relief. However, once the clouds burned off it left a heavy humid hot day once again. Oh well. The kids had fun. There was swimming, there was fishing (even though there were no big fish) and there were s’mores and campfires. Overall, the place wasn’t spectacular but it was nice getting out of the 110° weather in Tri-Cities that weekend. It’s also good to be in the pine trees. Everyone is happier in pine trees We should all live around the fresh scent of evergreens.
Here’s a quick summary of the trip, wrapped up in a 5 minute video and some photos after that.
Well, as you can see, I haven’t been keeping up with the documentation of the remodel of the 1964 Airstream Sovereign that we converted to a coffee shop. Starting a business was hectic. Remodeling an Airstream and starting a business was even more hectic; so the documenting of the remodel fell to the wayside. I do have photos and hope to put something together up here showing the process after the fact. But until then, you can check out the finished work at stromcoffee.com.
We are really pleased with how well the Airstream turned out. It’s an eye catcher for sure. We also had an espresso machine designed after the Airstream. You can see that here. The crafts people at Slayer Espresso did a great job with the aluminum.
So… hopefully more to come at a later date. Running a coffee shop is time consuming 😉
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:
Vitamin D 4000
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.
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.
Like most people who just acquired a vintage Airstream, I spent time envisioning what it would like when it was done. Shiny, mirror like polishing, new tires, wheels and hub caps, new lights, new windows, designer interior, gold plated steps, diamond studded this, ruby studded that. It was going to be grand.
But first, a cup of coffee to get started.
Stripping Off The 50 Year Old Look
Where to begin. I knew I was needing to find a shop to park this in so I could remove and keep material protected from the elements. It was October and the weather was going to be turning any day and renovating outside wasn’t an option. So until I found a suitable shop everything I was going to do at the house would be exterior stuff. I started with stripping things off the exterior and getting ready to strip the clear coat off. Before polishing, the 50 year old clear coat needs to be stripped off to get to bare aluminum. But before using stripping agents, the entire Airstream needed a good bath with a good scrubbing. I used a pressure washer to remove a thin layer of green haze that old trailers on the west side of the mountains tend to develop. After the bath I began to strip it. I tried three different stripping products: Citris Strip from Home Depot, Eldorado PR-5044 (from Vintage Trailer Supply – VTS) that we had left over from Miette’s Airstream work and finally the nasty stuff; Aircraft Paint Remover that I got from AirstreamSupply.com (they used to be in Auburn, Washington but moved to Utah).
Citris Strip is the most non-toxic of the three but the least effective. It stripped, don’t get me wrong, but some spots it didn’t touch and it needed to be left on for 2-4 hours (I washed areas off before 2 hours and it wasn’t stripping it). The Eldorado stuff was next best in effectiveness but it missed some spots too but didn’t need to be left on as long; maybe 30 minutes? The Aircraft Paint stripper was the fastest (visibly dissolved the clear coat in 15 minutes) and most effective but also the most toxic. We don’t like toxic. Thankfully, 90% of the clear coat I was able to remove between the two others and only had to use a small amount of the toxic stuff to get the stubborn areas. I could have saved a whole bunch of time by using the Aircraft stripper, but having a cancer surviving daughter, toxic stuff just isn’t in the cards anymore. I spent a couple days between using each stripper product and washing the Airstream. It took longer than I wanted.
Most people say to remove the plastics before stripping but I didn’t. I was replacing all the exterior lights anyway so I left them on. The windows were made of Plexiglas which I was going to change out to tempered glass so I didn’t bother to mask those off.
Polishing – Which Method?
Most people save the polishing for last since there will be exterior skin work that needs to be done during a restoration project. However, for the weather reasons stated above, I started on the exterior first. There seems to be two ways of polishing a vintage Airstream: the “Perfect Polish” or the “Black Bar” method. I won’t go into a ton of detail on how to do each one (there are a lot of other websites and posts on Airforums.com describing the details of each method) but I will say I used a hybrid approach after trying the Perfect Polish only method. I started with using Nuvite F7 and the wool bonnet. That was not taking off some of the stubborn spots. It was bugging me, seeing some splotchy areas in addition to it taking a long time just to try and get those splotchy areas less… splotchy. So I ordered some F9 and tried that. Not much a difference and it still took a long time. Then I went to Harbor Freight, grabbed an 8″ spiral buffing wheel and a bar of brown polish compound. I used the buffing wheel on the polisher with the brown stick and wow… what a difference. It covers less area at a time compared to the wool bonnet but it cuts through the metal much faster. I did two passes with the buffing wheel method compared to over and over and over and over with the F7/9 and wool bonnet. I’m sure there are better products to use than what I got at HF, but using the buffing wheel method as the first step is superior in my mind.
Once the first initial cut is done and you can get to the clean, raw aluminum (the first pass creates a reflection – granted, with an ugly pattern in the sunlight) then the Nuvite F7 does much, much better and goes faster. Then, after the F7 I went to the C and then on to the S. So the process I used: Black (or brown) Bar –> F7 –> C –> S. Don’t worry that there’s 4 steps in there compared to the 3 steps for the Perfect Polish method… it was still faster. I’m not gonna say my polishing job was really great; I couldn’t spend a great deal of time on it since I need to get this Airstream completely renovated and converted in a matter of 3 or 4 months. But I’m satisfied. Better products than HF should give better results as well. I’ve read that Fastenal has good cotton buffing wheels. I will know what to do for Miette’s Airstream polishing job now.
Of course, I found all the polishing stuff out through the 3 months of polishing on and off (this blog won’t be an exact chronological description of the process. I’ll jump around a bit). I will say polishing in the cold isn’t doable. The metal is cold and is harder to cut. The warmer the metal is the easier it is to cut. So I polished outside, in October and November except on the really cold days. If it got below 50° I bailed on the polishing.
So there’s my version of the polishing method. I”m sure others have figured out something similar using the two methods. I can say this after finishing the polishing… renovating an Airstream is WORK.
One of the first orders of business, when one decides to open up a coffee shop in an Airstream, is to acquire an Airstream. That we did. We had been searching for a while and waiting for a decent one to come up for sale which was in our price range. We found a 30′ 1964 Airstream Sovereign in Port Townsend, Washington on Craigslist for $2,300. That would be a 5 hour drive. So my dad and I rose early in the mornin’ and took off for Port Townsend. Yep, just like that. I pressed that button. 5 hour trip to buy a $2,300 fifty year old trailer sight unseen and drive it back? No problem. Just to compare, I’ve spent days… DAYS researching what dishwasher to buy and becoming completely indecisive about it. DAYS, I said. Well, not this time. I have a plan.
We got there about 1pm. The body was in pretty good shape except for some dents in the back above the bathroom window. It was already gutted, which saved some time. The floor material was in decent shape but it was old and the strength was fading. No floor rot or mold anywhere for the most part, which was surprising for it being a western Washington Airstream. The tongue was rough, but it could be cleaned up. No lights worked: running lights, brake lights, marker lights… nothing. I bought a cheap set of magnet towing lights at Harbor Freight with knowledge that the lights didn’t work. There were no holding tanks, no drain pipes, no water pipes. The vents were all goners. The glass in the windows had been replaced with Plexiglas (Apparently the original windows were not tempered glass and broke easy). The jalousie window next to the door was froze up and wouldn’t open or close. The interior skin was rough.
This was a 50 year old trailer and it showed. But this was expected. I planned on replacing almost everything I could, except for the exterior skin and the frame. There was one other Airstream that we thought about that wasn’t gutted and needed just as much work. That was going for $2,000 in Tri-Cities. That one wouldn’t roll without replacing wheels and tires. The only other vintage Airstreams that were close to our budget were in Montana, southern Idaho or western Oregon. None of them were under $3,000 so this was really a good deal.
So here we were, in Port Townsend, looking at a 50 year old trailer that we needed to drive 5 hours. The tires looked very, very, very, very old. It had split rims. That means they are very old as well. The tires had cracks (a lot) in them. That wasn’t a good sign. I debated stopping by a tire shop in Bremerton before making the long trek back. However, delays prevented that possibility so we ended up going for the 5 hour trip, hoping the axles, wheels and tires could survive it.
Delays, Delays, Delays
The first delay was my fault. I knew the 60’s Airstreams required a 2″ ball instead of the 2 3/8″ ball. But I never moved the 2″ ball to the receiver before we left. I was bright enough to throw the 2″ ball in the truck though. I brought tools, but not a pipe wrench. Thankfully the seller’s neighbor had a couple so we got that taken care of.
The next delay was much longer. About 2 hours. The magnet lights weren’t working quite right. The signaling was all messed up, even though we had it hooked up correctly. We tried swapping out connectors, wires, lights testers, etc. Ended up taking it to a Uhaul down the road and they helped us fiddle with it as well but still couldn’t get it to work. Afters 2 hours I decided to try a thicker gauge wire and it worked. The problem was, those magnet lights were only long enough for a 20 foot trailer so I bought an extra length set to use them on the 30 foot Airstream. So they used a gauge of wire just thick enough for 20 feet and that’s it. Found that out the hard way. Don’t extend the wiring of magnet lights while using their original gauge. 20 feet means 20 feet. Ok, got it. Finally, around 6pm, we were on the road back home.
Good Job, 50 Year Old Airstream
The trip home was pretty boring, which was good. I only went 60 mph the whole way back though. Wow, that was a long trip compared to 75 mph. It was a long, stressful day but we made it home. No blowouts, no axles breaking. Its a 50 year old trailer. Name another 50 year old trailer that can make a 350 mile trip with mostly original everything. Probably can’t. All was good.
We love coffee. Mostly, we have latte’s. Mostly, in those latte’s, we put a little coffee sweetener to it in the form of syrup (10ml to be exact). The syrup we usually use is Monin syrups. They have the least amount of “crap” in the ingredients. We don’t get too exotic with syrups, usually keeping Vanilla and one other flavor. We were spending $5.39 per bottle at the local Cash and Carry. When we are out of syrup and still want something added to the latte, we use sugar. The problem is, the sugar collects at the bottom of the cup. This is a problem.
A great alternative is simple syrup. Not only is it easier on the wallet than store bought syrup, it is extremely fast to make (5 minutes). We use organic sugar and filtered water so… its organic syrup It also doesn’t collect at the bottom of the cup. Liquefying the sugar allows it to be suspended in the coffee, thus making a more uniform flavor. But most of all, this is another way to cut out unnecessary ingredients from the diet and is inline with consuming natural ingredients.
So here’s the complicated process of making some very simple syrup. Pay attention. Study it and take your time.
Get a sauce pan
Add 1 cup of organic sugar
Add 1 cup of filtered water (even though you’re boiling it)
Miette’s Airstream has sat in the driveway for a few months now since its been winterized for the cold weather. It’s very difficult to not notice a big bright shiney reminder of what our family went through in 2012. It helps us not take for granted the things that we overlooked before. I’m not going to say its an everyday slap in the face, but its tough not to notice that we have to be careful when pulling into the driveway to avoid running into “Miette’s Airstream”. Miette likes to camp out in it every once in a while so it’s still getting used while hibernating
Spring is just around the corner and we are getting anxious to hook up the Silver Eagle and get out of the cold gray weather! No plans yet but I’m sure we can throw something together at any moment. In the mean time we changed the look of the website and also posted another video of Miette. Blue Bunny Ice Cream was a sponsor of Miette’s Make-A-Wish event and did their own video of her special day (Make-A-Wish did a video of it as well and can been seen here).
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.
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?
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.
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…
Airstreams Are Cool. Coffee is Cooler. Cancer Sucks.