Tuesday, June 16, 2015

Water, water, no where.
Hannah Grace and I went grocery shopping last night because, well, Vic is almost out of fruit and milk for his cereal, and we boiled the last of the noodles. Plain noodles is pretty much all the boys will eat at home, and that’s about all that can be cooked at an extended stay hotel anyway (we can pretend for the sake of this sentence that I would do more than that if proper kitchen tools were available to me. After Vic and I got married, the singles group had a shower for us and we were given cooking utensils and cookware and cookbooks. It was a big joke that it was all kitchen decor. I did receive one of the most useful cookbooks from one of the singles guys, Wayne Parker. It was called something like “Yikes,
Outside the pediatric procedures suites at Memorial-Hermann.
my apartment has a kitchen” I still have it. It is wonderful.) Well, as we shopped, there were almost no eggs, there was no water to purchase, there was no bread except a few packages potato hamburger buns, and only whole milk in off-brands. I looked curious at Hg and said “If I wasn’t a walking 80’s flashback with my hair all poofy from high humidity, I’d think it was about to snow.”

Eli had the first injection of the dose escalation trial of methotrexate into the fourth ventricle this morning. It was very simple. It only took about 15 minutes including prep time. The needle into the catheter at the back of his neck is smaller than the one they use to access his port. We did not have any numbing cream or “freezy spray,” the doctor just stuck it right in the back of his neck, and Eli
The infusion and flush into the catheter.
never made a sound (he did flush in his cheeks, which is the only tell-tale sign that he is nervous or that something is bothering him). We can use those aids, we just didn’t have any. He lays on his side, I think it is just so that when it goes in, gravity is not working against it moving up and down the spine. But, as soon as he was done, the doc stood him up and walked him around, and there has been no sign today that anything that was done. For those of you that have followed Eli through his first treatment, just think of what something like this could mean to how brain cancer is treated. The aftermath of that first treatment, the systemic damage to the body as the chemo travels through all the organs victimizing healthy tissue along the way to the brain, is hellish. If this worked (for Eli, or even in some kind of combination for
 children down the road) this could make so devastating things go away. I’m still cautiously hopeful, not getting ahead of myself, but still those of us fighting childhood brain cancer right now, I think are on the front wave of change for the children who will fight after us and it is exciting to see people trying to do something different. I pray that I will be alive for the ah-ha moment that brings less costly treatment.

So, the first treatment came and went with little attention and no fuss. We lucked up with a parking place next to the elevator, the research nurse on the trial met us at the front to walk us to the new procedures suites. The kids, sans Eli, stopped to watch TV in the waiting room right outside the suites while we went in. Then we were done. We
 walked out just as we had walked in, with time to watch over construction vehicles working on a construction site from the skywalk.

The next treatment will be Thursday, and unless there is a problem, we don’t even go for a check-up. We had a fun couple of days before Vic went home to get the girls Saturday. Since we just had the boys, we wanted to do something that maybe the girls wouldn’t care anything about, so, on Friday, we visited the Railroad Museum in Galveston, and ate at Rain Forest cafe (which the girls would like, but it was cheaper without them) kind of for Vic’s birthday, but mostly for the boys to enjoy with him. We drove around some, noting what we figured was devastation from Katrina and lack of money to repair what was
Getting ready for the first
injection, putting our super on.
 from Katrina, then drove down Seawall Boulevard, to look at the beach. The shoreline widens just outside the Galveston city limits and you can drive on the beach. So, we did and got out for just a
Eli wanted to bring Eli Bear for
his own picture adventure.
 minute - long enough for Caleb to have fun running from the waves, but that was it. Evidently, Galveston is not really regarded as a very nice place. We didn’t know, all I knew was that it had a beach… sure, it’s not the sugar-soft white sand of Alabama, or clear water, but Glen Campbell sings about Galveston, that has to be worth something. I remember I mentioned to someone else that Eli and I had gone down to Galveston and whoever it was just said, “hmm, yes…. ya know there are so many nice places right here in Houston.” I think that’s funny now, and I guess that’s what she was trying to tell me. But, ya know, it is a beach. Maybe there is a nicer one in an hour’s driving distance somewhere else. It is a port city, so it seemed a little industrial. Still I thought it was neat and to see it now getting so much attention because of Tropical Storm Bill, the boys at least know where they are when they are glued to the weather channel.

Vic went home Saturday, then the boys and I attended worship at Pearland Church of Christ in Pearland on Sunday. If Eli handles this treatment so well, we wouldn’t necessarily have to be right in the medical district, as we were thinking to be near the main hospital. And only coming to the
Caleb likes to "be funny" and thought this would look funny.
 hospital twice a week, wouldn’t be too big of a deal, yet I would want an easy drive straight in (traffic level is unpredictable from any
 direction, but it seems to me that 288 rarely has the trouble that the interstates do. I’m probably wrong and will sign a three-month contract and get burned about that). If we go a bit outside of Houston, we get a lot more bling for our buck. And Pearland is almost as straight of a shot as you can get to the medical district with very nice apartment complexes right on the exit of the main highway going into Houston, and there is a Memorial-Hermann emergency room on that exit as well. So, the boys and I visited the small congregation, which, as you would expect with anywhere one goes, was
 friendly. I think my kids would put the number in the youth group into double digits at least. But, I love small congregations. I know, I attend a large congregation that I also love, but still there is something warm about a small congregation.

Vic and the girls arrived late Sunday night after them having been to Bible camp. Abbey is nurturing another awful case of poison ivy on
The kids waiting on "Bill" to hit.
her face and neck (again! We had to get prescription steroid last time she was eaten up with it on her face and stomach) Hg seemed to survive it with nothing more than a sunburn along the part of her hair, and the loss of a good beach towel. They love Bible camp, absolutely love it, and Madison, in its usual fashion, does a wonderful job with the kids and running the camp.

Monday, we had our appointment for the injection, then we spent the rest of the afternoon looking at apartments. Please, don’t feel obligated to send me information about housing. I can’t imagine that you will send me something that I don’t already know. I know about the Ronald McDonald House, but I have more than their limit of four people. They will not make an exception (at least the one in Memphis would not, assuming that is consistent), there is a reason for the rule, and the “C” card just doesn’t play there. Most medical housing has the four-person limit, and most have
 time limits less than three months, and most have waiting lists. Some places are not in an area that I would feel safe staying at with the kids. It’s more than just sticking it out in a hotel room through treatment. The reality is that this could be Eli’s last summer, and the kids’ last summer with him. So, for me, I want to find a balance between enjoying the summer, living in a place that we enjoy and feel safe, and can create good memories for the kids away from home - which they love and did not want to leave for anything but Bible camp - but not set ourselves up for future financial hardship. We hope to have some partial help from a foundation, but we’ll see. My point is, finding a place to stay is more than just finding
The boys with the "Ghost Travelers" at the depot.
 anything that is free or cheap. This group is precious and genuine, but there are more layers to this than would be for some people that go to another town for treatment and go home.

So, today, while we are all checking our weather channel apps, we took the opportunity to avoid being cooped up and visited some apartments in the medical district to compare prices to be sure. As one would expect, it’s all a trade-off. We could be closer, in not as nice of an apartment for more cost or cheaper and farther away in a little nicer place. So, it is a hard choice, but I’m leaning toward Pearland just to be away from the big city and save a little money, and chance it with the traffic. Abbey and I went back
 to the grocery store - or Walgreens - to find water and bread and pop-tarts in case we lost electricity for our microwave and oven eye. We have enjoyed the weather channel and learned weather terms like “brown ocean.” I actually have cousins that live in Katy, and one of them told me that the medical district is prone to flooding, and Memorial-Hermann was flooded during the last storm. Our nurse told us that we should park our car above ground. Of course, we are at a hotel that sits on the bayou and there is no parking garage - and we have both of our cars here right now.

Thank you for all that you do, and the large part that you play in Eli’s little life.

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