So Miette and Kelly buried her guinea pig, Tina Turner Friday morning in front of Meemaw’s shop where there is a flower bed. Later that day, Lisa found Miette laying next to her grave crying 🙁 Later that night at bed time, when we all know its the toughest to not have something we miss so much, she cried herself to sleep, wanting to hold Tina. Its been a rough couple days for Miette.
However, on Friday she went thrift shopping with Lisa, her aunt Loretta, aunt Rydell and Meemaw. She got her ears pierced while they were out and was very happy about that. She’s been wanting to do that for quite some time.
Kelly and the boys went and got the oil changed and on a search for a fly shop. We found a sporting goods “store” in someone’s detached garage up in the hills. They had everything you could think of for bow hunting, guns, fishing… all crammed in a small shop. With our Keen’s and flip-flops, we were a little out of place with the local folk. If you could imagine fella’s coming out from living in the deep backcountry Pennsylvania hills for 5 months and then reappearing into society, that’s who we were waiting in line with. It was very interesting. The three of us were the only ones without at least 5 inches of facial hair. We think we saw bigfoot in there as well, waiting for his hunting license.
There must have been a thunderstorm that rolled through while we were gone; when we returned to the Airstream the awning was mostly pulled out of the railing and collapsed. It’s a beast to setup so we just folded it backup rather than setting it up again.
On Sabbath, Lisa got to see a lot of old friends she hasn’t seen in a while. The congregation over her has a lot of children in attendance, so once again, our kids were not lonely. Last night, we all hopped in the cars and drove to a local movie drive-in theater and watched double feature (Sorry, no pictures). Its been hot and humid the entire visit her and last night was no exception. A double feature makes for a late night so we all slept in a little longer this morning. It was the kids’ first drive-in experience.
Today will be our last full day in Oakland Mills. Tomorrow we load back up and head north to Vermont. It will be a full day of driving. We will opt out of stopping over in New York City, even though it would be cool to get a photo of the Airstream in Times Square… just don’t think I’d be able to get it back out.
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.
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.
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.
Today was a very busy day in central Pennsylvania. We took the kids to Lake Tobias Wildlife Park. It is a privately funded wildlife preserve outside of Halifax. The kind where you ride on a safari-type converted school bus and get up close and personal with the wildlife. Watusi cattle are rather intimidating as they lumber within inches of impaling you with their horns, approaching dinner plate size in diameter.
Its a great park that takes extremely responsible care of their animals. It was difficult to really enjoy the day, though, with extreme heat and humidity melting even the sturdiest of us. Bring on the reptile show in a delightfully air-conditioned auditorium. Love those reptiles. We ended our afternoon at Little Buffalo State Park. A summer storm was upon us and the grownups at least spent the entire time under a pavilion. Indy, however, who is half duck, reveled in the deluge. A very tired bunch piled into the truck for the trip home.
When we got back to Meemaw’s house, Lisa went into the Airstream to check on Tina, the guinea pig, who was not acting like herself this morning. We had doctored her up in our usual fashion and hoped that a day of quiet would do her some good. She did not look very lively at all on our return and Lisa gave her more doctoring, then took her to Miette for some cuddling. Sadly, Tina died in Miette’s arms about a half hour later and of course, she immediately started crying when Kelly had to softly tell her Tina had died. What do you say to a seven year old whose beloved guinea pig dies on her birthday?? She didn’t want to stop petting her and kept encouraging Tina to wake up. She cried for a good while… it was really tough on her. It’s amazing how a girl can go through cancer treatment for 9 months, endure the things she went through (losing hair, eye lashes, finger nails, pain, sick, surgery, etc)… yet losing her guinea pig was much harder on her. It was hard on mommy and daddy as well, to watch her come to the realization that her beloved little Tina was gone. Miette will bury her in a nice flower bed at Meemaw’s house in the morning, but she wanted to spend one last night with Tina (who is now wrapped up with a cloth in a box) beside her. It will be another tough one at the grave side, we’re sure.
With that, it’s time for this day to end. Here are some photos from the day…
Having a staring contest.
The girls getting ready for the presentation.
Standing in front of a mini Rainbow… its a bit difficult to see in the photo.
We arrived in Oakland Mills, Pennsylvania around 3:00 am this morning. It was the longest day of the trek so far but we were not going to stop for another night. We decided to make a small (seemed small at the time) side trip about 45 minutes up I-75 in Ohio to the small town of Jackson Center… where the Airstream headquarters and production facilities are located. We arrived at 2:20 p.m. just as the only tour of the day was heading outside to the service center. Nothing but Airstreams. Nice ones, not so nice ones, small ones, big ones, vintage ones, motorhomes, choppers (courtesy of Jesse James), etc, etc, etc.
We toured the production line (long tour) and got to see how they make the $80,000 new models. The kids were done with the tour about 20 minutes into it so after the hour long tour was done, we bolted for the store, where they had cookies and other goodies. We picked up a few relatively inexpensive things in the store (hats and caulking), lusted for more expensive items (solar panels, air vent fans, rock protector, new Airstream, etc), repented of the lusting and then had to get going.
Overall, the kids did excellent on the trip. They were the ones we were worried about the most with the 50+ hours in the truck, but they were great. What caught us by surprise was the condition of the roads and the amount of construction. Thankfully, we never ran into delays, just a lot of rough surfaces. Don’t get me started on the aging U.S. highway system. I gave the roads a harsh talking to while navigating what at times was the Oregon trail.
You know you’re on a cross country trip when you start out in Illinois during a huge hard hitting continuous thunderstorm, see the Airstream factory, drive by 3 huge Honda factories, cross over 5 states and finally pass a horse and buggy on a curvy narrow two lane Pennsylvania road at 2:00 am to end your day. Whew!
Saturday night, we booked it to the St. Louis area and pulled in to the Glen Carbon Wal-mart at 2am. This was our second Wal-mart camp out. Not sure at what point one becomes a seasoned veteran at the Wal-mart camping routine? Also, just to update everyone in the west, the Mississippi River was still there, in case there was any concern. Sunday, we stopped to see the McCoy/Lee/Sanford crew in Worden, IL. It was great to see them and as luck would have it, it was brew day at East Wind Brewing Company. We got to sample some tasty handcrafted brew. After the kids got some sufficient romping around time with the two Lee kids and the 4 McCoy kids, we loaded up and headed due east for 3 hours to Palestine, Illinois. We were headed to see the Parrish’s with their 4 kids at their country house.
We met these guys 3 years ago at the Feast of Tabernacles in the Poconos. Our kids haven’t been lonely on this trip for sure. They treated us to a beautiful and tasty dinner and a nice slice of blueberry pie. We hit the sack (late again) and planned for a 6 or 7am departure for the last haul (11 hours) to central Pennsylvania. No need for an alarm, since a Midwest thunderstorm started rolling in. By the time we were trying to head out at 6:30 am, the storm was directly over us. The lightning flashing and the thunder was a-crackin’. Interesting morning in the Airstream as the downpour outside started to make its way inside. Towels, buckets and the like were needed to keep the water at bay (no pun intended). The radar showed a steady line of thunderstorms directly over us, so waiting it out wasn’t going to work. We all hastily said our goodbyes, hopped in the truck, soaking wet, in between lightning strikes directly around us and started driving. This helped stop the leaks and got us on our way. We are currently stopped for the morning fix. You know its a bad storm if it stops us from having coffee first.
Here are a couple photos of stops and of course, cooooffffeeeeeeee. Practicing making espresso with the Moka Pot… maybe by the end of the trip we’ll have it down. Making good coffee is a skill that takes patience. I think we’re getting there. The small critters that poop wherever they want are enjoying the grass outside while we eat breakfast. A much needed Sabbath rest today. Hopefully our photography during the trip is respectable… trying to limit our mobile uploads and stick to DSLR photos.
Parked in the Wuckerts “cul-de-sac”… aka, dead end street converted into a driveway.
Taking a short potty break in the middle of southern Wyoming.
Moka Pot Crema. This is a good thing. Of course it takes good beans to do this (thanks Steve Stoneking at Buzzjoy Coffee Roasting located in Richland, Washington and online at http://www.buzzjoycoffeeroasting.com/). Had to get that plug in there.
Kansas Latte from the Moka Pot. Pretty easy; put in whole coffee beans, add hot water, wait 2 minutes and it just comes out like that.
After enjoying an overnight stay at some friend’s beautiful house in the mountains outside of Denver, being conned by them into pulling the Airstream into their “cul-de-sac” (it was more of a slow vehicle turn out), we are now on the high plains. We are in Kansas. We didn’t realize we entered Kansas. We didn’t see any signs or anything that announced we were entering Kansas. No offense to those living in Kansas, but we kind of see why. Its almost as if Kansas is trying to hide. There was no big sign or giant stone structure with a big “Welcome!”. No fanfare or bragging about “Home of the… whatever”. We have to force it out of them to admit that, yes, we are indeed in Kansas. Admit it… this is Kansas isn’t it??
Anyway, we’ve noticed on this trip that we aren’t the fastest travelers in the world. Its OK I guess. We did plenty of speeding around this past year to make doctors appointments, treatments and the like. Every slow minute with our family intact is just fine.
We’ve started the trip and made it to Utah. Here’s the scoop about the truck issue and how it was resolved, kind of. Its running enough to get up the hills at a respectable speed so off we went. For all those with a Chevy or GMC Duramax diesel engine: if you’re trying to haul an Airstream, travel trailer or a heavy load in general and you’re trying to head up a hill (big or small) and accelerate to even keep up with the speed limit, first a message on your DIC might say you need to replace your fuel filter and that the fuel filter life is empty. Then a minute later, if you’re DIC displays that “Engine Power Is Reduced” your truck will probably go into a limp mode… meaning accelerating is no longer an option and your max speed will be 40-45mph on a flat surface. Less than that if you still need to climb. This happened to us and we found a technical service bulletin of PIP4526. There’s a fuel supply hose that collapses under heavy suction pressure. This usually only happens when demanding a lot of fuel (when pulling a heavy load up a grade). We replaced the hose with the recommended part number (the replacement hose was MUCH heavier duty and improved) and the symptoms went away. We were able to make the hills now.
We made it into Ogden, Utah at a late hour and did our very first Wal-mart overnight parking. Adventurous, to be sure, and we were treated to an early morning screaming match between a man and woman. We started up the diesel rig for some white noise… Ahhh, peace at last. Searching for decent coffee has us at Great Harvest Bread Co and as luck would have it, Stumptown Cold Brew is about the best we can find. Headed down the dusty trail towards Denver…. Giddyup.
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.