Thursday, June 2, 2016

I have combined Facebook posts from the last couple of weeks starting with May 19, and the latest is at the end:

Eli and I are headed to Augusta tonight, for appointments in the morning to get him started on his second round of chemo. Thank goodness his numbers were up and he can start. Big Sam is going with us this trip, so we will be racking up the miles for him. We will be back tomorrow night, and ready for a relaxing weekend. We hope to go to a car show, and We hope to take HG to see the new Iron Man movie. I
know it's actually Captain America, but I am team Iron Man ... or to be more accurate, I am team Robert Downey jr. Have a great weekend!

May 23:

It's been pretty boring around here... yay! So, boring, I really don't even have a picture to share. However, Eli was not able to start his second cycle due to his chemistries dropping again, and they also stopped the experimental medicine until his counts can recover. We got back from Augusta
Autographed from Mr. Baseball
Bob Uecker.
 Friday (May 20) night late. He will have bloodwork done locally tomorrow, then if that is good, he will have them taken again on Friday, and will start Friday at a lower dose of the chemo hoping to avoid the delay at the end of the second round. His immune system was very low, too, which was a little unexpected. He seems to feel great, though. No issues out of the ordinary 11-year-old issue realm. We are done with school for the others, and are trying to plan our summer - a good mix of education and fun, I'm hoping. We kicked it off today, our last day of school/testing, with getting the water slide out, throwing some random art supplies on the table, chasing their cousins' dog down that was loose, the girls preparing dinner (ok... maybe not so much fun for them), and wrapping up with evening video games. I was in Houston the entirety and more of the summer last year, so I'm looking forward to being in control a little more this year.....(a side note message to Fate: I wasn't purposefully tempting you with that last statement, honest). The kids all get to pick a "summer bucket list" item, that one doable thing that is must doable before summer is over. Inevitably, one of the boys, or both, will say "go to Toys R Us." Abbey will say get a puppy, Hg will say go to the beach. So, I usually get the extreme of both ends with our summer bucket lists, and then we sit down and brainstorm to rein it in. I have Emma, from our hometown, on my mind tonight as I don't think they have been able to turn her situation around. So, please lift her up, and her mama Katie. I also want to add that my friend whose nephew was told by local doctors that he had a cancerous tumor in his leg went to St. Jude for further testing, and they confirmed just by looking at imaging that it was a rare benign type of tumor. That shows the
importance of going to specialists. I am so relieved, and thankful for that answer, and so thankful that St. Jude is so close to us. Speaking of that, we will be at the local clinic tomorrow checking numbers, so prayers that they are up!

May 24:

Numbers still not high enough. Will check again on Friday. Boo.

 May 27:

We have an appointment this afternoon with the St. Jude clinic today for bloodwork, to check his counts. Still waiting on the slow-poke platelets to catch up. He was a hair away (ha! get it... b/c he has no hair b/c of chemo) on Tuesday from the minimum requirement to start back up for cycle 2, so
 maybe it's our lucky day.... to start chemo.... hmm, weird to think that is lucky. Check our video page for a little video of Eli playing Wii sports with his dad last night. I hope you can understand him, his speech in general is not strong, and is always a little slurred. But if you've ever met him in real life, he doesn't say a word, and sometimes doesn't even move, except maybe his eyes to look at you, and then away again. So, this is a little more of his home personality. I'm not sure if this is the one where he says "Take that old man!" or not, but he was having fun with his "turn with Daddy." I am humbled to be helping organize a fundraiser for Emma Clark, the local little one who has been fighting for so
 long. And, when I say "fight", I don't mean like Eli has been "fighting". Eli has been fighting while he plays Wii sports, this little warrior has been wrapped in an intensely violent struggle at death's door for months, almost a year. And, this is against a second cancer because of treatment from the first cancer. (A real possibility for Eli if he were to ever be clear again.) Her mom's latest, and what she said would be the last update was so heavy. So, another cancer mom and I have been off and on for some time trying to decided on a fundraiser for them. After that post, I just thought, ok, well, we've got to do something now, who do I know, and what are my resources - cars. So, I tapped into the pool of car peeps, and others that I have come to know, and we were able to pull together a Cruise-In for Emma, which is an informal gathering, no registering of the cars, or judging. But the Optimist Club is coming to grill hamburgers, Brain Freeze is coming for ice cream, and I'm pretty sure we will have some music popping up all
 around. We will have door prizes, and a 50/50 cash prize at the end of the evening, and 100 percent will go to the family. We think we already have about 60 cars coming. But you don't have to have a cool car to come. Bring a chair, grab a burger and ice cream, and enjoy the music, and looking at the cars. It's at a park, so it will be a very nice summer evening. Help us pass the word about it, the details are at our non-profit page Team Victory 4 All. We want to come together as a community in honor of this little one, who is a giant in her example of strength and courage, a reflection of the parents that are beside her. If you can't come to the event, but would like to make a donation to the Clarks, you can send to me, made out to our non-profit, and we will get it to them, just earmark it "Emma Clark".

May 27:

We are good to go for round 2! The dosage of the TMZ is being cut back to hopefully avoid such a long delay for the next cycle. They have had to do that for two other kids, but he is "experimenting" with Eli a bit with how he is breaking up the dosage. Something about how the medicine is
metabolized in some kids. So, we start tonight. We went to a movie this afternoon after the clinic. Eli has been an Angry Birds fan since way back during his first treatment when we were at Target House and we relied so heavily on handheld games, so he has been waiting for the movie to come out for how every long they started advertising it on the games. We finally went to see it today, so check mark. We are all eagerly awaiting "Finding Dory" in a couple of weeks, that was quickly placed on our Summer bucket list. Please, remember Zach, and mom Nancy, as he was dropped from a trial before even starting it. Zach is 21 or 22, I think, and they have been so patient and diligent for many years in their quest to cure him. Praying the closed door is just a redirection. We are planning to go to a big
Memorial Day event tomorrow. Someone was kind enough to get us a pass for closer parking, and there is a car show with it, so I think Vic may be taking Bruce to that. It is super early, so Eli will go with the rest of us, and the pass, later for the car show. My brother-in-law is an athletic trainer for the Milwaukee Brewers, and he was able to snag a rare autographed baseball from Mr. Baseball, Bob Uecker, for Eli. How awesome is that. So, that's going to "Get up! Get up! Get up..." on our shelf in the Mustang room. ha!

June 1:

We had a nice Memorial Day weekend, but it didn't go as expected. Eli started his TMZ last Friday, and was very sick during the night. He rarely gets sick any more, so it scared him, and he was up a lot. We had plans to go to the hot air balloon festival on Saturday, to see the balloons, of course, but
there was also a car show. Someone was very kind to think of us and gave us a pass to park close so that we didn't have to waste Eli's energy just getting from the parking area. We were so excited (I was! I have lived here all my life, and never been), but with Eli up during the night sick, we didn't get going as early as we had hoped. When we finally made it, the line of cars to get in was a couple miles long (someone later told us a car had stalled up the line, and had caused back-up). After we were in line a while, Eli had to go to the bathroom. With the first night of chemo already causing the puking, diarrhea was a given. So, I had to get out of line, find a place to get the proper supplies to clean him up, with a good bathroom, and by the time all of that was done (if you've ever been to that side of Decatur, there are only houses over there) well away from the park, we decided to wait and go on Sunday. I had an errand in Huntsville I needed to do that day anyway, so we headed that way, and found ourselves at Harmony Park Safari, a little drive-thru zoo. It was on the kids' summer bucket list, so we decided to salvage the day and do that. The boys hated it. Did not like the animals coming up to the car, but the girls loved it of course - we have to always be a house divided. Eli was not sick any more, but was worn out, and as soon as we got home from church on Sunday, he put his PJs on, and laid down on the couch. I knew Monday was going to be a long day, so I just let him rest and we never made it to the balloon festival. I really hated it, still think about it. I hated to miss it because we've never been, and because someone was kind
enough to help us get there, but plans just don't always work out for us, so I usually try to preface accepting invitations with that possibility.

Anyway, on Monday, I already knew that we were going to be going out of town to buy a new car. Not to replace Big Sam. No, no, no! Although, he did hit the big 300k. I've put on our summer chore list for us to clean him up good, then maybe find somebody that could kind of "detail" it for us, not quite because they would need to keep him a week, and it would cost one thousand dollars to do it, but as much as possible. Instead of replacing Big Sam, I have been looking for a while, and waiting for what I wanted for a third car for us to have for Vic and/or the girls. The opportunity to get it in our price range was Monday in Chattanooga, so we took a day trip up there to purchase a Honda Civic. So, that was a long day, but a big check mark. Hg can go ahead and be driving it, and I don’t know what the fall holds for us, how distracted we will be, and I didn’t want to be scrambling, taking just anything when Hg turns 16 in November. So, when the Memorial Day sale put it in our price range, we took advantage of the opportunity, and checked it off as done. Next on our list is a puppy! I have a friend who is a veterinarian and she is helping us look, and research shelters, but I found one at a rescue near Atlanta that the kids just love, so we may see about going there very soon if she gives the ok for it. That will be an incredible lifestyle change for us, the kids just don't realize.

Since I am home this summer, as opposed to being in Houston like all of last
The tree seems to be worried that Big Sam is being challenged.
summer, I have implemented my own, personally-designed, summer incentive program by which the kids do regular chores, learn new chores, take responsibility of some basic things, and earn money, and get to do things on their summer bucket lists. Yesterday was sort of the first official day (sort of, I started them last week on each taking a night to plan and fix supper, and they did very well for the most part, and you will be able to guess who is in the “most part” category), so we'll see how long we stick to it. Even though it is designed for them, it requires a lot more of me than if I just did it all myself, so it is also an exercise for me in not being lazy and just doing it all. I’ve learned to be a pretty good delegator, even with the kids, but you have to let go of your expectations of what perfect is, or how things should be done. Except folding the towels. The towels MUST be folded a certain way to go in the cabinets, and countless times, over the last at least 12 years, I have upheaved folded towels to be done a second or even third time. So, most everything everything else, as long as you can tell that they made a genuine effort. There’s the key to that. 


All but one of mine (you can guess) seem very excited to have the goals, and the structure. Eli seems very excited to have the structure, and to have it clearly spelled out what is expected of him, and to have his own goals clearly spelled out. I think most kids, at least three quarters in this house as a
Grocery duties
sampling, want to please, but if it is not clear what it takes to please, then that causes problems with the ones that ordinarily would not be a problem. But, I've already had one ask (can you guess who), "So, what if we don't do any of these things?" "Well, that is certainly a choice. You still have to do the basics, because you are a live person, and because you live in this house, but if you only do the required things on the “Basics” row, then all the things you see on the "Summer Fun" row goes away for you." I am going to drag her by her pinky toe, if that is the strongest hold I can get, out of the world of lazy and disrespect. I informed them - as I have before, so this is nothing new - that if they have a smart mouth with me when I'm trying to help them earn money, and earn time to do something fun, that I will fire them for the day, or for the week if it persists. All points are lost, and they will not be allowed the opportunity to earn anything for the rest of the day, or week. Not even an hour had passed from that caveat, during which time I asked Abbey and Caleb to wash the car, until I fired her. It's a one caveat, one-strike kind of program. I want to grow doers not talkers or whiners, or mumblers! I hate mumbling under their breath. If you have something to say, commit to it, say it where it can be heard, and take the consequences. Otherwise, keep it in your head. In the past, I’ve made Abbey say her mumbled smartiness 5 times very loudly before enduring the consequences of it. Suddenly, she wasn't so sure that what she wanted to say was worthy of voicing. Anyway, ha! Just sharing a little bit of my Mommy Dearest approach to my own role. I'm mean, I know, a little rough, I know, some of that is just the me they get as a mom, but I think teaching them to shoulder the responsibility of consequences, whether they be good or bad, is one of the greatest gifts you can give your children. So, anyway, all that to share that Eli seems to be doing very well, is engaged, and participates in what our family tries to do. He’s done with his chemo for this round, so now to wait for his MRI June 13th, and for his counts to dip, and recover for round three. Our friend Coulter, who is on the same trial, got good and bad news from his latest trial. I think they will be preparing to try something else soon. So, prayers for their decisions, and prayers for Emma as she has stabilized, but stabilized in a very serious, and fragile state.

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