Monday, July 6, 2015

(July 2)
Guess which patient number one rocked the first cycle of phase one chemo into the fourth ventricle. Yep, this patient number one. Eli had his last does of methotrexate into the fourth ventricle today to wrap up the first of three cycles. His labs look awesome, even normal, but he is super cranky and not eating without me poking it through his clenched teeth. His energy level is extremely low, preferring to lie on the couch at all times, and crying whenever we have to walk much distance.
Have no idea what to attribute it to with such great lab numbers, except that he is having poison directly flood his brain and spine. I mean, you can’t do that to the body and pay nothing, but it seems to be puzzling the doctor as to why he would suddenly be so lethargic and avert to eating. Even still, compared to our first treatment, this is mild, and we have to remember how bad it could be. He looks good, the not eating is worrisome, but it is not zero, and we have been at zero on a feeding tube before. He has an immune system to protect him from common viruses, however, I still prefer to protect him just so a sickness doesn’t affect the treatment schedule. And, if he already feels bad, how much worse if he catches a tummy bug or something. So, as long as that poison is eating up the cancer, we have no complaints.
We tried to celebrate some today, although note the above attitude from our man of the day. We met with Gaylene and Hannah before they left Houston, (I don’t think I’ve shared that they are now unsure if Hannah has actually relapsed. They are going to scan again in two weeks, so we are prayerful for good news for them.), then I mistakingly gave the kid that is not eating the choice of where to eat. Not fair when he is going to get chicken fingers wherever we go (unless it’s pizza) and will only eat one and a half pieces no matter where we go. Long story from there, but after TRAFFIC and eating lunch and TRAFFIC, we tried to go the museum despite the one that doesn’t want to walk not wanting to walk. I wanted the others to get to do something before going home. They’ve been pretty patient with losing out to Eli’s little fits (which he does use to his advantage just to get what he wants, which is to do the opposite of what others want), so I really wanted them to get to do something. It was late in the day by the time
 we dealt with TRAFFIC and TRAFFIC, and there was literally a back-up of TRAFFIC from all lanes trying to enter into the parking garage for the museum. I drove around and found a lot a good ways away that would close at 1700 hours. By the time Eli walked at Eli speed, we would just have to turn around and come back to the car. So, we walked a few steps down a little trail, with Eli crying, then got back in TRAFFIC and came to Pearland through TRAFFIC. Thankfully, so far it has been an easy drive in, and we only hit TRAFFIC in the afternoon. But, it was disappointing to miss out on the museum because we tried to go to the zoo last week, and literally could not find a parking place anywhere, anywhere. We drove around and around for a good while, and I just got tired of being in TRAFFIC for a parking space,
 and gave up. We even went to what we thought was shuttle parking, but it was only for the weekends. So, the kids are a little disappointed because they haven’t done as much fun stuff as they thought we would. We played Headbands, but you can see Eli preferring to stay on the couch, he is unparticipatory unless it is a video game, but even then he is not that interested. (A side funny note: So, we were playing
headbands, and Caleb was wearing the word "socks". He narrowed it down to something made of cloth that you wear sometimes under clothing (pants). Abbey gave the hint "I need to go put mine on." He started giggling, and covered his toothless smile, then opened his hand to say "Iz it a bwa" then he just busted out laughing. That's what you get when you have teenage sisters and you play headbands. It was so funny to hear him say it.") We’ve only gone to the pool once, Eli cried the whole walk over, but eventually mad his way into the side some water. We couldn’t go yesterday because I used an all-natural sunscreen that didn’t screen so much sun. They were pink, and I didn’t want them to get back in just yet. For the regular walking, I went back to an old favorite that I used to entice him to walk at Target House - a remote controlled car. And look what we happen to find, a 2015 mustang r/c. I bought Caleb one so that they could do it together, but they use the same channel and that is trouble. There is not switch for the channels, either, so that was disappointing. It
 has rained a lot recently, and we got stuck at Target waiting it out, so we started thinking about what Superhero we wanted to be for Superhero Day September 12. The tooth fairy had to make ANOTHER trip to Houston, but since she wasn't expecting to come back so soon after Caleb lost the other tooth, and she had not laundry coins left, she had to credit my credit car $5 for him. So, not much extraordinary stuff, they will not have much to share about Houston except TRAFFIC.
We will hit the road Friday morning for a rejuvenating visit home. Our little peaceful apartment wasn’t so peaceful last night with a screaming match next door about midnight. Of course, the only words that were clear were the curse words. I could easily pick those out. That’s the only thing about the hotel, I could at least call the front desk, but here, no front desk. Finally, either their upstairs neighbor was banging repeatedly on their floor, or she shot him, because it got suddenly quiet after the banging. I will be glad for the little annoying birds that chirp from inside the columnar evergreens at the corners of the windows of the house now. I do dread the TRAFFIC tomorrow because of the holiday. I’m considering back roads for fun during the light hours on the way home. Trying to decide if that is dumb driving a 275K-miles car with four kids by myself, or if it’s cool and adventurous - guess we won’t know until tomorrow night.
(July 4)
We made it home. It was a stressful trip. Watching the weather, navigating to hit the seam (which I did pretty good, no rain until we got to warrior and the severity had decreased), was stressful. The
kids bickered all day, and Eli had a really rough time. We thought since he would just lay on the couch at home, why not just sit in the car all day, but it wasn't long before he was tired if sitting up. He cried to stay in the car any time we stopped, but cried to be in the car (eventually, not at first), too (VERY unusual for him). He was very disagreeable about where to eat. Made a special trip for him to get a subway (which he is tired of) instead of where we ate. He said it was too hard (roasted chicken), so I stopped again, this time got turkey. By the time, he got started it was 1430 hours. I tore it in half (he gets overwhelmed if it looks like a lot of food) and got him set up with a tray, made it so easy to feed himself. Got on the road, and every 5 minutes, I said, eli take a bite, or eli get a drink. He eventually
 said he only had the end bread left. A while later, I stopped, and the reason he only had a part of the bread left was bc he let most of it fall between he legs into the floor. So, by 1630 hours, he had maybe gotten two bites of it. I got him set up with the other half of the sandwhich, (as he's crying saying that it wouldn't stay in his lap, or the turkey was slippery), hit the road, he took a couple bites at my prodding and he threw up. It didn't seem to be sick puke, and wasn't digested really. He just said he felt like he needed to burp, but couldnt. He did the same thing another time last week. He was kind of heaving as he ate, said he needed to burp but couldnt. I could tell that he wanted to throw up then. I hope he is not starting to have trouble swallowing, that could be disease progression if the tumors are near that part of the
 brain. Or, he is starting to get very hunched over and short-torsoed from radiation. I wonder if his digestive tract could be starting to have trouble. Anyway, it was after 1700 hours and he hadn't had hardly anything, and now sure wasn't, and I couldn't sit with him for hours poking little bites in. I still had 5 hours of driving to do. I bought him a Gatorade and for the rest of the night when he was awake, I said "Eli get a drink." He hates that, and whines when i say it, trying to distract me with excuses, and he only got a few sips after conveniently being unable to take the top off, or with the road being too bumpy for him to hit his mouth, he said. We finally made it home, he went immediately to bed and is silent and still (and probably dehydrated) beside me. We did stretch our legs at a Mississippi welcome center and an Alabama welcome center. And in other news, Big Sam hit 275,000 miles.

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