Friday, February 28, 2014

First things first, Eli’s scans were better than expected. The disease had regressed quite a bit, though still present. The doctor was very happy with the response to the treatment, as are we. Though we know this is a bandaid, we will enjoy it while it holds. We are elated and blessed to be traveling this road in the comfort of our Creator’s hand. So, we are obviously staying the course with this treatment, then he will have another MRI in two months to check again. We were originally going to come home Friday night after Eli’s chemo infusion, but the meds didn’t get ordered, so it ran starting it really late. It takes almost 4 hours for the whole appointment, so we chose to stay over a night that we didn’t expect to stay - and, guess what I needed to do??? WASH CLOTHES! How perfect is that… you can’t write irony like that.

Yesterday, we arrived in Memphis two hours later than intended. If I was ever able to leave the house on time for significant travel, I think I would have to sit on the curb long enough to be late so that I wouldn’t feel weird. I was not packed Thursday morning because packing wasn’t a fire until this morning. I am a fireman, I only deal with fires. If it is not on fire, it does not get my attention. Big Sam was on fire… or dealing with Big Sam was on fire all week. He was a guest of McClary Tire from Monday afternoon to Wednesday afternoon waiting on a slew of new parts to piece together a new coolant system, including the radiator, something about a belt and hoses, but not the water pump or the timing belt. So, it took a while. The boys and I had to stay home TWO DAYS (mornings) in a row! Try that with a no-video game on weekdays rule … re-constructing legos in a house with zero workspace just irritates any attempt at catharsis.
He hasn't grown. They stopped the hormone
when he relapsed.
The absence of Big Sam until Wednesday afternoon put a little kink in the detergent collection because I was unable to pull the trailer around, so I had to pull back the reigns on soliciting that. Still, we pulled into Grizzlies House with 870 pounds of laundry detergent after stopping at Valdosta church of Christ in Tuscumbia, AL for 200+. They asked what company to send the thank you to, and kept insisting to contact a company. I said, “there’s no one place, this is just a collection from people that want to help, just friends that follow Eli. All I do is say, ‘We want to take ‘this’ to St. Jude and people bring it… a lot of it.” Your generosity is overwhelming and amazing, thank you for helping us.

So, the scheduler was gracious to work the schedule over and move our appointments back. I’ve driven the trailer before and the camper a couple of times, so by no means an expert, but I know about the counterintuitive moves to backing up a trailer. We arrived at St. Jude at 1500 hours, parking is a bear because of all the employees during regular business hours. I want to be nice and arrange the trailer so that whoever is unloading can easily get to it, and take in the building. But I also do not want to unhook the trailer if I can keep from it because it is two-wheeled, so it’s like a see-saw unhooked. If you put
your foot to go in, it will tip and probably roll if not propped at the wheels. And, you can’t just reach in to get it all. So, I eyed a tight spot on the side of the building that backs right up to a door. We were going to be late to our appointments that had already been moved, so I started trying to maneuver it in. This was near the guard house which was switching shifts. So, the one getting off decides to help me. thanks. So, he comes to my window, which I roll down. To back a trailer you turn the wheel opposite of the way you want it to go, and once it is going straight, in order to keep is straight, you constantly turn the steering wheel quickly back and forth. So, I start turing the steering wheel opposite of the way I need it to go, and he starts yelling at me, “No, no! Don’t go that way, just keep it going, keep it going the other way.” Well, there is one car that I can not see (no mirrors on the trailer), so I think well, he sees something I can’t, so I do as he says. Then he gets
We watched the traffic and the pyramid at sunset...
 this confused look on his face, I start going back the other way, “No, no! don’t turn it that way, keep it going, you’re alright.” WHAT?! So, I creep with what he says until I do see the car. Now wedged in across three parking places with the corner of the trailer blocking the car behind me and the corner of the Sequoia blocking the car in front of me, he says, “ummm….You’re ok right there. Yea (convincing himself) yea, just leave it there, that’s good.” Really?! Really?! That’s good? Now, I can’t go anywhere unless those cars move, and they can’t move unless the cars beside them move. He looked at their tags and they were employees, not patients so they should move by the end of the afternoon. I do not have time to figure it out, so, I unlocked the trailer and we had to skeedaddle to triage for blood draws. Thanks for the help, man-person. I could only hope that the cars moved in the correct order as to not make anybody mad. Thank goodness when I
... and we watched the traffic and pyramid at sunrise.
 came back after our appointments were done all cars around me anywhere had moved…. hmmm, coincidence? I’m sure people were afraid to park near me. So, I easily backed it out of that squeeze and found a more appropriate space.

The Grizzlies House gal was just in shock at the amount and said they wouldn’t have space to store that much. She asked that we share with the Ronald McDonald House. So, I made plans with some helpers from Sycamore View church of Christ to help unload at RMH. But, when I returned to the trailer, it was almost cleaned out, so I guess she changed her mind. Eli and I easily delivered it, then enjoyed an easy evening of a movie and pizza in the room. The morning started early today with our first appointment at 645 hours. He was first up for the imagine machine, and they run everybody through a sensitive metal detector before going back to MRI. Eli's shunt always sets it
 off, so they run a wand over him. They have changed the rules, and now anyone, including parents, have to fill out paper work and TAKE OFF anything with metal on it... in it.... or that uses metal HOOKS with which to close - they "had an incident." So, now we all have to gown-up, but it is temporary and only inconvenient. They begin the anesthesia while I am in the room and I’ve watched him succumb to the induced sleep many times. Still, each time, it is tough to see his eyes close. Then I am alone for about three hours, waiting.

The rest of the day went pretty smoothly with the wonderful news that the disease is responding to the treatment. I know we have some new friends following Eli, so I want to again remind everyone that we already knew that this will not be a lasting effect. What we don’t know is for how long. The highest hope is two years, but for now we are elated to have tomorrow. He tolerates the treatment extremely well for now. He has some nausea and minimal diarrhea only while he is on the chemo. His counts drop, but do no bottom out. And the gift of being treated while at home is second only to today’s news. We are still just simply high on that news.

A lot of waiting and sitting. We were at the hospital from 645
hours until 1930 hours on Friday.
Thank you all for all that you do for us, sincerely, thank you.
This is how we view the scans. These are images of his spine
and the brain is on the screen at the end.

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