From Yellowstone to Home

Well, a week ago today we left Yellowstone and headed home to Washington state and wrapped up our (almost) month long trip across the country that came about with Miette trying to figure out what she wanted to do for her Make-A-Wish. She didn’t want to do Disney World or Disney Land. She said she “couldn’t keep it” so the idea of going to see  “Mee-maw” (her grandma) morphed and changed form until it finally ended in an Airstream (which she could keep) and a cross country trip.

Something About Those Airstreams

We woke in the morning, around 5:30am. The girls were eager to get an early start so we would make it home in time to see their good friends who lived across the street. They were scheduled to depart on a 2 week trip of their own the following morning. It takes a while for us to get completely ready to roll, so, after coffee, we were heading out of the Fishing Bridge RV Park at 7:30am. Low and behold there was a fellow Airstreamer leaving the park as well – first one we saw in Yellowstone. They waved to us with a thumbs up, we waved back. They turned left, we turned right.

Fishing Bridge RV Park in Yellowstone National Park
Looking down the row of non-Airstreams.

For some reason, its always cool to see another Airstream. Maybe its because we saw about 13,924 white boxed travel trailers on our trip and only a dozen Airstreams.  It’s refreshing to see that glimmer (sometimes a blinding glare) of the silver when looking down the row of standard RV’s. Not trying to knock those without an Airstream; I understand Airstreams are expensive and it really limits who can acquire one. However, vintage Airstream’s are out there for the same price, and most of the time less, than newer model white box trailers. The vintage Airstreams may not have all the latest greatest bells and whistles, but they last longer and provide that satisfaction of not blending in. But then again, some people don’t mind blending in… to each their own. I personally didn’t like travel trailers at all – but Airstreams, now those just are just cool looking and provide enough nostalgia for me to put down my backcountry pack (for a bit) and pick up the hitch. But I digress…

Fishing Bridge RV Park in Yellowstone National Park
It was the most trees we’ve seen in an RV park by far

Back to our day

On our way out we saw a large herd of bison in the Hayden Valley and a few more that were still laying in the grassy spots. A couple were walking along the white fog line of the road, close enough to force us to slow almost to a stop in order to get by in case they decided the crosswalk was right where they were standing. We were heading north to leave Yellowstone through Mammoth Hot Springs area and the northern entrance. We made a quick potty stop (already) at Roaring Mountain, showed the Airstream to an interested elderly French couple and took off, pushing the pedal hard (until reaching 35mph).

Roaring Mountain in Yellowstone National Park
Yellowstone is the only place that I won’t touch the streams 🙂

The north entrance has its coolness with the Golden Gate and the Terraces and is probably more interesting than the eastern entrance inside the park; but when it comes to approaching Yellowstone, the eastern way still takes the cake.

We freaked out a little going through the Golden Gate and boulder field just after, hoping there wouldn’t be an oncoming tour bus. We dropped down into the small summer city of Mammoth Hot Springs and saw a herd of elk cooling off in the shade 10 feet off the main road/parking lot. We then dropped further down, leaving Wyoming, entering Montana into Gardiner. Of course we did meet a tour bus exactly at the bend at the Roosevelt Arch – we survived.

Once we left the park, a couple of the kooks fell asleep so we were off and running for the next couple hours, passing by a couple Airstreams within minutes of each other. This day was the day we saw the most Airstreams in one day. Maybe it was National Use Your Airstream on Friday Day? In total, we saw about 6 Airstreams that day. One of Miette’s favorite things to do was to keep an eye out for any Airstreams. When someone spotted one it went like this:

Person 1: “AIRSTREAM!! THERE!!” (Pointing off into the far distance)
The others: “WHERE?? WHERE??”
Person 1: “Over there!” (still pointing off into the distance)
The others: “WHEEEERE???”
Person 1: “THERE!!” (pointing to the Airstream that was now passing by)
The others: “Oooooo, coooooooool!”

Lunch and Beyond

Once child #3 and child #4 awoke, it was time to stop for lunch, fuel and coffee. We ate at Joe’s Pasty Shop in Butte, Montana. The staff was extremely nice and helpful and the food was good. If you’re stopping in Butte for lunch, check out Joe’s Pasty Shop. However, if you’re stopping in Butte for coffee, don’t expect much. The place we stopped at (I won’t mention any names like Florence Coffee Company) pulled our shots just shy of 10 seconds. Oh well, it’s maintenance coffee at this point, even though there is no way enough caffeine is going to get extracted in 10 seconds.

On our way towards Idaho, we finally passed an Airstream heading in the same direction as us, for the first time. It was a 34 foot Excella (three axles). Man, that thing was long; once we started passing, it took us a couple hours to finish. We waved with happy faces as we passed the towing vehicle, only to be greeted by what looked like a grumpy old man who didn’t wave back. Umph. Well, nevermind then.

We encountered a forest fire on a mountain just off the freeway near the Idaho-Montana border and saw multiple helicopters dropping water on it: very cool to see the helicopters but I’m sure the homeowners close by weren’t thinking the fire was too neat. After that, we stopped to fuel up. At this exit we saw what looked like another Airstream in a free overnight parking area (turned out to be an Avion). Low and behold, Mr. Grumpy Pants also pulled into the same parking lot with the Excella. We waved again, giving it one more chance.This time he gave a small little wave back. We’ll take it, I guess. We were guessing he was just transporting that behemoth and not actually an Airstream owner. Maybe he was grumpy because he had to haul a football field length Airstream?

The rest of the trip home was the typical drive from northern Idaho to home. We passed by Sacred Heart Children’s Hospital where Miette did treatment. She did her “thhhhhhhhbbbbpppppppptttt!” at the building as we passed. As parents, we have mixed emotions on that place. There are a lot of children suffering on that oncology floor (and other floors as well). We are thankful Miette is no longer a part time resident there but its also tough to not think about the others there. They treated us well there. The “thhbbpptt!” is more directed to cancer in general.

The Close Out

In closing out this trip journal, we’ll say overall it was a great experience. Obviously, as a family of 6 there were times when personalities made things difficult. The travel days were long but overall the kids did really great. We passed up a lot of sights that we would have loved to stop at. Unfortunately time was not on our side. A word of advice for those seeking to do a cross country travel trailer trip: take more than a month. One month was not enough at all. There are things you don’t realize are out there. If you’re planning it all out, I’m afraid your plans will be left at a rest stop on the second or third day.

Even though we all had great fun on this trip, we all agree on this: We would give this whole thing up; the Airstream, the trip, the sights, the experiences… we would give it all up without batting an eye, if it meant Miette didn’t have to go through what she went through in 2012. So the lesson is this for all those with young families, as we should have learned before: don’t wait till something horrific happens to your family to determine you need to spend more time as a family in adventures like this. The world will not fall apart if you decide to go a huge trip like this – it actually keeps turning.

So get your maps out, get your gear ready and do it now!

Yellowstone National Park

Yellowstone National Park was our destination when we awoke in Rapid City, South Dakota on Wednesday morning. We were hoping to be there around 6pm, time enough to have dinner and enjoy the cool mountain weather.  But then the Buckhorns jumped in our path, distracted us, and slowed us down considerably.

Buckhorn Mountains with the AIrstream
Approaching the Buckhorn Mountains from the east

Then, along came the little town of Cody, named after the American West legend, Buffalo Bill Cody, and had us open-mouthed again.  About thirty seconds after leaving Cody, when we were ready to buckle down and hit the road hard to make up for some lost time, along came the cliffs of Cedar Mountain and the deep gorge that is just below Buffalo Bill Dam. The gorge was only visible for a brief second or two before the road headed into a long tunnel but those two seconds were very captivating.  Wyoming teases its travelers. We sat on a flat road, through a mix of fields and sage brush and then BAM! A deep gorge and towering cliiffs. Unfortunately, there was no time to get photos and turning around with a 31′ Airstream isn’t something easily achieved with us rookies.


So we kept going on Highway 14. More distractions were in store as now we could see the beginnings of mountains. Big mountains. And what’s that? A wide shallow mountain river wandering through the valley floor? Are those fly fisherman? (Indy, put your head back in the window).  Are those gigantic beautiful log lodges and cabins on huge ranches with pine trees and meadows? The Shoshone River Valley is one of the most beautiful valleys ever designed. Washington State has some pretty impressive valleys in and around the Cascades and Olympics, so for all those north-westerners who haven’t seen the Shoshone River valley, that’s saying something. The mountains on either side of the river grew taller and taller and the road slowly gained in elevation the closer we got to Yellowstone.  We highly recommend taking this route into Yellowstone (unfortunately there was a certain girl who didn’t notice any of it due to some Nancy Drew books). The disease of MGTN (Must Get There Now) prevented photos from being taken. It was painful to not stop. Indy, the fly fisherman in training, moaned at each bridge crossing the river. The fear was that if we stopped, we would not want to continue on. Could it get better than this?

Umm… yes.

Finally, Yellowstone National Park

We arrived at the Yellowstone National Park entrance at last! After forking over $25, we immediately started climbing in elevation. Up and up and up and up through switchbacks and curves… all at 35 mph. One thing to remember: it takes a long time to drive distances in Yellowstone. Top speed is 45 mph (the sign said “45 means 45”). The road finally crested at the tree line and in the rocks beside Hoyt Peak and we started down towards Yellowstone Lake. The eerie remains of the 1988 fires were all around us at this point. Huge swaths of blackened sticks still remain, even 25 years later. I (Kelly) remember the fires vividly as our church youth group took a trip to Yellowstone that year. I remember seeing the smoke billowing from behind the hill as we looked on the Old Faithful geyser and then large flares a 1/4 mile off the road on our way back towards Jackson Hole.

We saw our first wildlife just before coming up to Yellowstone Lake. There were two bison standing in a small patch of grass. They were dark, still as a statue and almost looked fake. They weren’t eating or grazing, just standing still. Miette was excited! She loved getting to pet the bison at Lake Tobias Wildlife Park in Pennsylvania and this was feeding her passion even more.

Yellowstone Lake Summer Clouds in Yellowstone National Park
There were clouds moving through, close to sunset over Yellowstone Lake.

We stopped at the lake to finally take a photo since the clouds were SCREAMING for some photography to be performed. We were at Fishing Bridge RV Park a few minutes later. After a little mix up with our reservations in which Steve, the reservations guru on staff, fixed for us (thanks Steve!), we were setting up “camp”. This place was more of a temporary city than an RV Park. We pulled the Airstream through what looked and sounded like a street party. Nonetheless, we arrived, were tired and happy to be in Yellowstone.

The next day we awoke, had coffee from the Moka Pot using beans from Capitol Grounds in Montpelier (we were in a desperate search of beans in Vermont and finally found a local roaster) and spent a full day making the rounds inside the park. We first stopped at the West Thumb Geyser Basin, where Brier discovered that walking backwards on the boardwalk almost the entire time was fun (and slow). He did this for the rest of the day whenever a boardwalk presented itself.

Walking Backwards at West Thumb Geyser Basin in Yellowstone National Park
He is walking away from the camera, not towards

From there we headed north through the Continental Divide and made a quick stop at Kepler Cascades before dropping down into the Old Faithful complex. We ate at Old Faithful and waited what seemed like a really long time for the geyser to go (it was “late” by 25 minutes). It was amazing to see the amount of people that gather for that show. After some ice cream, we started heading further north with the intent to get to a place where there’s a swimming hole (somewhere around Firehole Falls – but we weren’t sure where). Brier crashed and so we took a side track to the Great Fountain Geyser so he could sleep a little longer before needing to get out of the truck. We waited 30 minutes for a smaller geyser to go off and then continued towards Firehole Falls. We ended up finding the beautiful swimming hole on a one way drive off the road. The kids loved it! It was not too deep for the kids and they spent a little over an hour swimming and enjoying themselves. A perfect natural outdoor pool.

Firehole Falls swimming hole in Yellowstone National Park
A swimming hole near Firehole Falls

From there we quickly (46mph) headed east to the “Canyon”  for a quick peek at the lower waterfall. We debated whether a bird we saw (the size of a dot) sitting way out on a rock formation was a bald eagle or osprey. We agreed on it being a bald eagle since it would be a better story to tell. After that we started the last leg south towards the RV park around 7 PM. The goal at the beginning of the day was to hit this section (the Hayden Valley) around evening time to increase our chances of seeing wildlife.  We saw a lot of bison, some up close, and Miette was ecstatic! She was counting them and lost track around 40 or 50. We never did see any moose, which Esme was really craving to see. We made another quick stop at the Mud Volcano. As I told Indy and Esme, I’ll tell you all as well: if you ever had the strange desire to let out a toot with a whole bunch of people around, do it at the Mud Volcano since it already smells like that. No one will EVER know it was you and you can walk around giggling to yourself, knowing what you just did and that no one has any clue about it. But I digress. We arrived back at the Airstream for some leftover chicken Caesar salad. It was a very busy day at Yellowstone National Park but worth every single one of the $25 entrance fee.

I’ll finish up Friday’s travels in the next post so stay tuned. Here are some photos from Thursday though.

Yellowstone… But First The Buckhorns.

Our day Wednesday seemed extra long for whatever reason in our mad dash for Yellowstone. We started off by hightailing it out of MIrror Lake State Park in Wisconsin Dells, heading north on I-90 towards Minnesota (Indy tried fly fishing in this lake, only to realize it really should have been called Algae or Swamp Lake State Park). The park itself was decent but the RV sites had shared driveways. They had plenty of room to spread out the sites more than they did. No matter, we were only there overnight.

Airstream Air Conditioning
Miette was enjoying the air conditioning much better than the humidity from Ohio the night before.

We stopped at La Crosse to stock up on some food, eat breakfast and fuel up. The truck was getting about 11-12 mpg the entire trip.  The goal was to try and fill up every 250 miles or so assuming there would be a place to do so – about every 3.5 hours. This would also be the time to stretch, snack/eat and use the restroom. When the traveling days are 10-11 hours, minimizing the stops are critical to prevent the day from heading into the “insanity” level. One thing we learned on this trip: when going across the country, a family needs more than a month. Driving 10-11 hours each traveling day was not ideal since the actual time, including stops, was 13-14 hours. That’s too long and we knew it but didn’t really have a choice since time was against us. Unfortunately there were a lot of sights we had to pass up due to this time crunch. Museums, landmarks, geological sites, etc. As an example, on Wednesday we entered South Dakota with the the intent to sleep over in Rapid City. We had to make it to Rapid City in order to make the next days goal of getting to Yellowstone a reality. This resulted in us passing through Badlands National Park in the dark. We got a tiny little glimpse before it was real dark and really wanted to stop and see it. Even more so after spending all day through the flats of southern Minnesota and eastern South Dakota. Finally the geography was getting interesting just as it got dark. Sigh.

Regardless, we made it to Rapid City by 10:30pm. We stayed at the Lake Park Campground. This place was more like an RV park than a campground. The office people were very nice, the restrooms were very clean and it wasn’t a huge place, so overall it was a pleasant place to spend our 10 hours of rest. They weren’t any more pricey than the other RV Parks/campgrounds. For those staying more than a night at Rapid City, Lake Park had a nice location close to the lake: paddle boats, swimming and fishing. We, however, had a date with Yellowstone and needed to get going in the morning, which we did. We headed off into the Black Hills of South Dakota and eastern Wyoming. It was good to see pine trees and rolling hills/mountains again. Ever since leaving Highway 7 in Vermont, the geography of the I-90 route struggled to gain our attention much (we unfortunately were driving next to Lake Erie in the dark), with the exception of crossing over the Mississippi River and heading into the Minnesota. That was a decent 30 minutes.

Once we were through the Black Hills, we dropped down into Sheridan where we grabbed a bite to eat and fuel up. Dropping out of the Black Hills presented us with a nice view of the Buckhorn Mountains off in the distance. Before hitting Sheridan, there were signs saying how Highway 16 was a much better drive over the Buckhorn Mountains than our planned Highway 14. The signs said the scenery was better, the grade was less and it was a safer road. We stuck to Highway 14. Even though we have no idea what Highway 16 was like, we couldn’t imagine anything being a better scenic drive than Highway 14. Needless to say, we loved Highway 14 through the Buckhorns. To sum up that drive in 5 words or less: Wow.

The Buckhorns immediately presented us with a steep climb. We figured the road would go around some mountains and up some valley floors and find the lowest path into the range. Nope. The road tackles the first large mountain it comes against. Up, up, up and up we went. Think Cabbage Hill but no freeway, 3 times longer, way more curvy and definitely slower.

Buckhorn Mountains with the Airstream heading to Yellowstone
Looking down into eastern Wyoming from the Buckhorns.

Every switchback revealed a tremendous view of the eastern Wyoming. The elevation we were at made the Black Hills look like the plains of Illinois. Of course, Miette was a bit nervous looking down and may have been reconsidering her choice of going across the country at this time. Once the road began to level out, we found ourselves in a national forest with mountain meadows galore, rock formations, alpine lakes and free range cattle and sheep (and needing to suddenly stop for a sheep)… and very narrow road. The driver (Kelly) was tempted all through this drive with the sights screaming at him to take his eyes off the road. After about 30 minutes of pretty level roads, the route began to drop down the other side of the Buckhorns. As steep as the climb up was, the downward path was the same.

Buckhorn Mountains on the way to Yellowstone
Looking north out across northeastern Wyoming from the edge of the Buckhorn Mountains.

The scenery changed extremely fast from green forests and meadows to dry, rocky terrain. It was still beautiful though. The towering cliffs were dominating the view and was very impressive to the eye. The road went down a valley that a road probably shouldn’t go down.

Buckhorn Mountains
The Cliffs of the eastern Buckhorns

Cliffs on one side, stream next to the road on the other side and cliffs hanging over that stream. We were able to stop and grab some photos but the time thing was still against us. We never knew the Buckhorn Mountains existed. We do now. If anyone is ever going to go to Yellowstone from the east, take Highway 14 from I-90 over the Buckhorns… you will not be disappointed. I wouldn’t even hesitate to recommend those coming in from the west to make a longer trip into Yellowstone and catch the Buckhorns on the way in.

The Buckhorns were just the beginning of the geographical eye candy. The next post will explain our route after coming out of the Buckhorns and heading into Yellowstone, including our time there.

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.

“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…

Super Duper Bummed

Our first trip in Miette’s Airstream is appearing to be in serious jeopardy. We were heading out of town, going up hill and the truck started having problems. The computer on the truck reduced the engine power and we couldn’t go over 35-40 mph up the hill. This will be a slight problem heading across the country, climbing over the Rockies and the hills, etc. So we had to turn around and come back home. Miette was super bummed and crying. Poor girl. All the preparation, excitement and anticipation of her big trip all came crashing down on her (and the rest of the family). It was a long day trying to get the truck fixed and she was pooped. We are working diligently to find a way to get this truck to haul her Airstream up a hill and have the funds to fix it and keep her trip possible. One possible fix is GM Part # 20832565 (fuel line assemble) or the GMC technical bulletin of PIP4526; darn you GMC, now is not a good time.

Even with this bad news, one thing we try and remember to keep things in perspective is this: at this time last year our Sunday nights were spent getting ready to head into chemo treatment for 3 or 5 days. The daunting sadness that caused is no longer a part of our life. For that we are grateful. It would be extremely nice to get to leave on Miette’s trip but as always, it could be worse.

We’ll keep you updated.

Late Start

After a couple major “oh no, that’s not good” moments on Friday, we are just about under way for the big thing. Many thanks to Grandma and Grandpa for helping us get outta here and taking care of the West Richland palace.

IMG_5276

Preparing the Silver Eagle

Before we embark on the big trip across the country to visit friends and family that Miette wanted to do as part of her “wish”, the Silver Eagle needs some preparation work done to it. Even though the volunteers who worked on the Airstream worked their butt off and made it beautiful, time limited them from getting it travel ready. The electric brakes don’t currently work, some outside compartment doors aren’t weather proof which is bad for the electrical system (its 41 years old!) and a jack stand needs replacing. The Airstream will be going in for a systems check at our local RV service shop, RV Supply Specialties. Mark was an integral part of this Airstream project happening and Susie has nothing but great things to say about him. We look forward to meeting him! Anyone completely willing to donate time, energy, money, materials or whatever for children who have gone through the nastiness of chemo and the outright fear of cancer must really understand the value of their assistance in helping families in these situations. “Thank you” seems so small in comparison.