Thursday, October 16, 2014

Picking pumpkins at Caleb's field trip.
Amazingly, this is my 300th post! Yay, me! I started this blog before Eli was diagnosed originally, and didn’t have any real plans for it except to have a place to write down my thoughts and fun stuff about the kids and life in general. I actually had a blog before there was blogging at www.vicandkristie.com. I originally wrote basic html for the very plain website, then when flash and scripts starting taking over, I used a software program called Dreamweaver to design. But my education and professional experience is in print graphics design, so the techy industry quickly outgrew my hobby skill level and left me in the dust. I couldn’t do anything without Vic’s help, and neither he nor I had patience for that. After Eli was diagnosed, I looked for ways to get the word out about him efficiently, but I didn’t like using the services like Caring Bridge. I wanted something more
At our local orchard picking pumpkins
unique. I was excited to find this very basic blogging tool via google, so it has enabled me to do what I wanted to do originally which was write, not web design. It has been a great release, an outlet for me, and a comfort in at least believing that people read it and in turn are united in prayer for our son. Thank you all for being here for us.

Eli’s chemo day was moved to yesterday (Wednesday) instead of Friday because the affiliate nurses are going to a conference. That worked out since he totally skipped the last mid-cycle because of suppressed chemistries, so it didn’t hurt my feelings to do it a few days earlier than normal. But, his labs were still just barely above the minimum required by the protocol even after that extra time to bounce back. He was able to get the full dose, but still it is obvious that we are dealing with cumulative toxicity, which we expected at some point. This is the beginning of
Our local Ford dealer McClary Ford hosted a car show for
Limestone County Mustang Club of America. It is rare for him
to be without a hot wheels in his pocket. He likes to take
a couple of toy Mustangs to shows then try to match them with
what is at the show. This was close.
cycle 11 for him, so he’s been going a while. I think they are going to rewrite the doses to try to string him out on it longer, but because we are dealing with the blood-brain barrier (the body’s natural defense against harmful agents entering the brain. In order to get to the tumors, the medicine has to be strong enough to get past that defense and still be potent against the cancer.) there is a point where you are giving an amount of chemo that never makes it to the brain. So, if you down the dose too much, it is just chemo going into his body for nothing. But, what is that magic dose? Can’t know. So, I really did not want to stop chemo or change chemo dosing until after we hopefully had a couple of clean scans behind us. I am already stress-eating for the next scan… who am I kidding, I never stop stress-eating from scan to scan.

I am so thankful to be where we are right now. I think I have said before that we did not expect for Eli to live much beyond summer, so I really feel like we are living on prayers right now. When we were
I think this is a Torino that he actually picked as his fav this time.
at Disney at the end of the year last year, knowing the cancer was back, he use to talk about what he wanted to dress up as for Halloween. It would break my heart. He would smile and talk about being Darth Maul (I have no idea why. He has never even seen the Star Wars movies, but there was a cool Star Wars ride at Disney and he made his own light saber, which is Darth Maul’s. So, I think that just made an impression on him), and get so excited to tell me about it. I would have to look away so that he wouldn’t see my eyes welling up, or I would distract him with something happening at that moment so that he wouldn’t talk about it. I still have some trouble when he talks about his future, but I am more easily able to just enjoy the moment with him. I am learning to just enjoy him talking about whatever he wants to talk about, whether it will ever happen or not. I like to talk about things that will never happen, too, it’s called dreaming, and it
This is his first finished pumpkin. He wanted to do War Machine
after becoming a big fan from Superhero Fun Day.
is fun and leaves positive energy in your heart. So, I am getting better about listening to him talk about where he will live when he grows up, or what kind of car he will drive when he grows up, or what he will be when he grows up, or how many kids he will have when he grows up. It is tough to keep my mind so under control all the time. I wonder why the tendency, or the default for one’s mind is on the sad. One would think it would be the opposite since being happy is just so much more… happier.

Anyway, we are enjoying the fall and all the busy-ness that fall has turned in to, and thankful to be doing so. I took the kids to pick out pumpkins, and was so please with myself that I even remembered in time to enjoy the pumpkins. So, we made a special effort to do that, and get them painted right away. I had forgotten
that Caleb had a field trip to the pumpkin patch! Oh, well, I guess we'll do two each (Eli and Hg went on the trip as their field trip, too) I will collect costumes until the 20th or so, and please remember Baylee, Derrick, and Grant. A special prayer for little Kapri who is at St. Jude enduring her second round of chemo. They are far from their home in California, so if you are inclined to send cards send to Patient Kapri Geernaert, 262 Danny Thomas Pl, Memphis, TN 38105. She about 5 and likes the girly stuff. Tell her that you are a friend of Eli The Eliminator.

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