Thursday, February 19, 2015

Our nurse practitioner today was telling us about all the different sicknesses they were seeing, and I think my throat closed up. Maybe I blacked out, or it could be that I just kept nodding my head as I listened. I don’t know, but it only affirmed what I already thought. Getting on the bus at 6:45 this morning - only because it was so cold and I wasn’t sure if the sidewalks were clear for us to walk and Eli would have been a crying mess getting his vitals done - my first thought was how many different areas of the world everyone came from that are where we are right now and bringing some nasty germs with them. And, I’ve already seen it, too. And they have warning signs about ebola and other stuff, and they question you when you check in - I don’t think it matters because people are going to do what people are going to do
unless you tell them they ain’t doing it. Then half of them will still do it. There is something really big going on here this week. Lots of middle-aged people in black overcoats, dresses and suits. Lots of tour guides with little signs. Someone said it was the board was here for maybe some kind of dedication or something. Well, they just have to cut a path for our red wagon carrying a pan of ice with a plastic bladder of pee in it. That’s part of the 24 hour collection that we have to do for them to test for protein collection. We had a much easier day than I anticipated, except for the 7 a.m. appointment. It is still in Eli’s file that he is sedated for MRI’s, so he had to be NPO, which means that he was not allowed to eat or drink prior to sedation. But, he went right in, no sedation. That cut our time hugely, and then our afternoon appointment called for us to come right away. So, we were done just before lunch. We did some piddly stuff around the hospital, saw Leah from home, looked around the gift shop, played video games. We came back to the Tri-Delta about 430 ready for pizza and a movie and bed. Since he does his MRI’s without sedation, they split it into two days because it is full brain and spine, so it takes a while. Forty-five minutes each session perfectly still. He gets to watch a movie on the first day, but the day they do the spine, he has to lay on his stomach, I think, so he can’t see the screen, but he can listen to music. Today, when he had his vitals done and blood drawn for screening, his blood pressure was high, as it has been for a
 while now. The other thing from today is that his thyroid hormone is low. It was at our last visit, and it is still low this time, too. They want to put him on a low-dose thyroid med. I hate medicine. I’m betting they are going to put him on a blood pressure meds, too. If we ever do get off this chemo, I hope I can figure out how to get back to some more natural meds and supplements for things like that, but while on chemo, I just don’t want to mess with anything. And, it is tough anyway to do anything out of the ordinary, or out of step with our assembly-line routines to help organize our days. How nice it would be that they all ate PBJ, strawberries, and the cheese puffs from the all-natural brand that has Einstein on the front, and stripped cookies (that’s Caleb’s lunch every single day, except pizza day at school when we remember), but it’s just craziness at home all day. Then boom it’s bedtime. The only other thing from today is that his weight is exactly the same as three months ago, and his height is also exactly the same - exactly. He has not grown in either direction in months and months. Caleb wore two
sweatshirts of Eli’s recently. They were big on him, not so much that he couldn’t wear them. By next winter, they will be the same size. Which is about right. Eli stopped growing when he was seven. Caleb will be seven in a couple of months. So, tomorrow, is the second half of the MRI. He will be briefly sedated after that for the lumbar puncture, but not very long at all - still got to be NPO. Then we will have our review with Dr. Robinson late in the afternoon. Vic will not be coming as he was planning. The weather is expected to be really bad here, and at home they've called off school already. So, I am expecting to get iced in for at least a day, maybe more. They have extended us at Tri-Delta for another night, so that we do not travel late tomorrow. Then someone here told me that the worst was actually coming Saturday, so I don’t know when we will get to come home. Eli and I bought several snack things at the cafe, just in case they didn’t have enough staff to open it over the weekend. He and I can survive on crackers and applesauce and cereal for a couple of days. I figure they will have some kind of
provisions for us. So, it will just be me and Eli tomorrow. So reminiscent of our days at Target House when our Friday nights were just him and me. Nobody else to please, nobody to cook for, nothing to clean. Just one small load of clothes to do and put away just in two drawers, then just plans to watch the new Phineas and Ferb. I just pray that our evening is peaceful, and that I am not emotionally pouring over past messages of facebook groups to find out where the latest best guess is for treatment of relapse. Thank you for the support that has held us up for three years and counting. Please, pick a time tomorrow that you would not ordinarily stop for prayer, a time that you purposefully excuse yourself from what you are doing, even if only in mind, and ask the Creator of our worlds, the Maker of Eli, to continue to carry him in the protection of His hand.

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