Saturday, June 10, 2017

I made a quick run to the grocery store yesterday morning, getting just enough to make it to Tuesday. Tuesday is my normal grocery day, so I wanted to get back in routine step. As I was getting out of the car at home after my errand, I heard a ruckus of sirens up on the main road. The sound stopped, then as I walked around Big Sam to retrieve the groceries, I heard a heavy engine behind me, and knew the aforementioned ruckus was coming my way. A fire truck was coming down our street, straight at our house (our house sits at the bottom of the street, so any vehicle coming down the street comes straight at our house). My heart beat a couple of heavy beats for a few seconds as I froze in the driveway watching it, with a brief thought that Hg or Abbey might have had to call for emergency help for Eli. I took a hesitant step toward the truck coming at me, resisting waving it down until I saw it commit to our driveway, or the turn. But, thankfully for us, the truck turned. Then less than 10 minutes later, a medical helicopter landed in an empty lot across the street. A construction worker, roofing a house, had fallen off the roof onto the pavement. He was med-flighted out.

Eli gets so tired of me asking him how he feels, or if anything is bothering him. “(Sigh) Mama… stop looking at me. I’m fine!” he says frustrated at me. To Eli, I’m like the painting on a haunted house wall that has eyes that follow you wherever you go. I’m always asking, “Why are you doing that with your hands; why are you doing that with your eyes; why are you doing that with your mouth; why are you doing that with your feet; why are you sitting down; why are you looking at me that way; why did you sigh; why did you burp; why did you cough; why did you stretch your fingers out; why did you stretch your leg out….” just every little thing he does, I try to evaluate, and I know there is going to be a day where I run one errand too many.

We arrived home very late Wednesday, and Eli hasn’t had any more episodes of numbing yet. He has been doing well, helped clean out the camper, has helped with chores today as well. He has been in a good mood, his normal energy level. We finally were able to chat with Eli’s Augusta oncologist, Dr. Johnson, after he had reviewed a list of trials and/or treatments I had sent him on Monday. He is helping us weed-out pursuits that might not be beneficial to Eli, or those for which he may not qualify. Historically, Eli’s cancer has been slow to progress, but this time it seems the vengeful spread has picked up the pace. So, getting into something quick will carry quite a bit of weight. We may (nothing is concrete, but this is what is standing out to us on the table right now) join a doctor out of Children’s of Atlanta, and treat him with an abridged  version of a trial that she is doing. It’s all oral again, he can do it from home, and when we do need to see her Atlanta is not far, but it is chemo. It will be a couple of weeks before the doctor gets all the scans, paperwork, and then reviews it all. She is already familiar with Eli, because of Dr. Johnson sharing about him with her in the past. So, the way he talks, it almost seems like she is intrigued with Eli, almost asking to take him. His case is complicated, and the kid portrayed on paper is in contrast to the kid that walks in the door. So, he brings quite a bit of research history to the table, and Atlanta is a top three neuro-oncology center in the nation, so he would certainly add a unique case to its files. So, that’s where we are with him, just waiting. I’m giving him some supplements for different things, trying to get him as healthy as we can during this interim, and praying that time be kind.

Our trip! Please, enjoy this link to a slideshow with lots of pictures. It was wonderful, thankfully. The RV was simply fantastic! What a difference having a bathroom and some storage makes as opposed to the pop-up. We did not, however, pull the mustang. Bruce had to stay home. Because of the weight of the car, the trailer it would have been on would need its own braking system. But the camper that we had was not set up to use a trailer with brakes. So, we couldn’t pull it (we didn’t know this until we went to pick up the camper), but that was a blessing in disguise, because we would have been in a couple of pickles if we had been pulling a trailer. As far as I can tell, Google Maps doesn’t care if you are driving a Civic, or a 31-foot RV, and it doesn’t care about crime rates either. If anyone would like to join me in creating a Google Maps app that creates a route that avoids high crime rate areas, PM me (when I say “join me”, I mean that you are actually able to do it.) But, we did take the radiator cover off of the car for the UAW Local 3000 to sign at the car show, which is one of the reasons we wanted to bring it anyway.

The night before the car show, we attended a meet-and-greet dinner with some of the Local members that couldn’t come to the car show. Afterward, the girls and I wanted something new to read, so we found a little bookstore at a local mall. On Saturday, our new friend Joe, with the Local, and his team put on a fantastic show for a first show, and lots of contacts were made that want to be involved next year. Former NBA star Terry Mills was there for the day, plus the mounted police, the fire department with kids activities, and the prize table for the raffle was incredible. Eli was inducted as an honorary member of the Local, and received a special “Local’s Choice” trophy for his car for our Mustang room. Eli was pretty torn between three choices for his trophy; a new grabber blue 5.0 mustang; a 1971 (I think) grabber blue mustang, and a Monster Truck Tow Truck. The combo of the monster truck and tow truck could not be resisted, and took home the Eli’s Choice trophy.

We found a nice pizza place, and an ice cream place in downtown Monroe, I think it was. We stayed at a campground in Monroe, and it was very quiet and clean. A miniature golf course was next door, so the kids played one night. The other places that I had planned to eat at didn’t work out, either too bar-ish, or the surrounding area was too scary to get out. Sunday, as I mentioned, we worshipped at Flat Rock. Here’s a crazy thing: When we were at the little mall on that first Friday looking for a bookstore, we walked through for a minute, near the movie theater and food court. We were wearing our Eli Eliminator mustang shirts. The preacher and his wife had both been at the food court, and noticed us because of our shirts. Then there we were walking in on Sunday morning. Crazy! Sunday afternoon, we were able to make to Greenfield Village at The Henry Ford. I think I already said that we did not allow enough time, and Eli was pretty pouty about that - mostly because he knew that meant the gift shop stop would get cut. We did get to ride actual Model T cars, and the historical significance of what is there is almost surreal. Outside of the Smithsonian, The Henry Ford has got to be the best collection of American history.

Monday, we did not get to visit the Model T factory because it was closed, so we had to improvise, and found our way to the Renaissance Building, headquarters for General Motors. We took some pictures of Canada across the river, and we tried to drive on Belle Isle, but it was being cleaned up after a Grand Prix race the day before. After lunch, we did do something that I just absolutely loved, and I know at least Hg, and Caleb liked it, too. The Parade Company is a Detroit non-profit that is responsible for the parades in the city. These would be on par with the Macy’s Thanksgiving Day parade. We got to tour the facility, and see some of the artists at work. Everything is done by hand, and it is truly art - from blowtorch to paint brush.

Tuesday we packed up the camper, which was no big deal, and went to the Toledo Zoo. It was one of the best zoos, and mostly because of the proximity of all the exhibits to each other. You didn’t wear yourself out walking a great distance from one animal to the next. We did get a wheelchair for Eli just to preserve his energy longer, so that is why you will see him in one in pictures. My favorite thing at the zoo? Finally getting a caricature of the kids. I’ve always wanted one, but we were always in a hurry whenever we ran across one, or it was too silly of a depiction. So, I am thrilled to have one, that almost made my whole trip!

We left Toledo and drove to Indianapolis Tuesday night, and pulled into a campground just for the overnight. Then on Wednesday morning, we visited the Indianapolis Motor Speedway museum. A race league was practicing that day, so there were no tours. It was neat to see it, and I did enjoy driving the RV through the “tunnel”. We found a neat diary farm with an ice cream shop in Bowling Green as we entered the last few hours of the trip home. We enjoyed the campground some during the week. The kids went swimming one day, but it was a bit chilly, and we enjoyed some downtime each night at the camper, played some games outside, and played video games inside. Vic and the girls went to see Wonder Woman, and the boys and I stayed in for our own movie.

We got in after midnight Wednesday, and up on Thursday for bloodwork, cleaning out the camper, getting the dog, and returning the camper, and we had a mustang club meeting. It’s been a full day at home today! The kids wanted to take the dog to a trail to walk, but I refuse to go anywhere unless it was an emergency. So, we’ve been doing laundry, and I’ve been looking at trials.

We had a car show to attend today, and hopefully then we will get into a summer routine at home. The non-profit has taken a backseat in the last couple of weeks, and it can’t really afford to be shoved back there, so I’ve got some catching up to do. Speaking of that, I’m looking for Florence, AL, friends that would be interested in coordinating the Florence car show on July 15, if anyone from there would like to help form a committee. It’s hard to know where we will be at that time, and I need someone that knows that area to help get it going. PM me if you/your group would be interested in taking it on.


Please, continue praying that Eli’s complete earthly healing be in line with God’s will, and that a clear path is made plain to us in our decisions. Keep Eli’s siblings in mind as well. Also, remember a young one named Kaleb, who was the “Headlight Hero” at the Michigan car show. He had just started chemo, so he was not feeling well at all, and they had to go home.

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