Sunday, July 22, 2012

It was a rainy day inside and out of St. Jude today. Eli has been off-the-chart fussy today and I’m not sure why. Yes, I know, who wouldn’t be when you’ve had poison infused in your veins going to every organ in your body.  And, he’s had no one with him but me every hour every day, so that can’t be fun, but still, there was no break from it except for the two hour nap and the one hour Spongebob and the six hour Mario video game and while I read the Shark fact book someone sent him. By the way, there are hundreds of species of sharks. Isn’t it weird how God made some of the biggest animals eat the smallest prey or only eat plants. If humans were like that, I’d only have a lettuce leaf once a day. He was so weepy and crabby (I’ve watched too much Spongebob) that I couldn’t open my mouth to even begin to say something before he was yelling at me. That is tough for this good vibe gal to take; it wears on a soul. Other than his attitude, he has had a decent day. His temp, so far, hasn’t gotten above 100. The rash is still flaring up off and on, and his heart rate is up and down. But the diarrhea slowed today, which really helped in many ways. His cultures haven’t grown anything yet, so they are thinking that the fever is related to the chemo because of how it started this time and last time, almost identical. But, he continues on one of the antibiotics. Tomorrow, Monday, is “day minus zero.” The plan would be to have the stem cell transplant, which makes him very sick while he is getting it over a period of about an hour I think, and then check out that evening. So, we’ll see. It will help his feelings tremendously to get out of here. There are many detours to that plan according to what each day throws at us. He complained about his neck hurting tonight and when I asked him where, he put his finger right on the shunt tubing that runs down the side of his neck. To quote Junie B. Jones, “I just let out a big old sigh at that boy” because guess what it is time for…. say it together out loud because you know – A SHUNT PROBLEM. So, we may be looking at an ultrasound in the morning to check for blockage or something. But he hasn’t complained any more. When I do get out of here I have 100 Eli shirts to hand out to St. Jude kids thanks to you guys that bought extra for them, so I am really excited about that. I’ve got to talk with Target House management to see how best to distribute them because I don’t want to just lay them out for the taking because these shirts are for patients only. I know it’s hard to believe, but even here, a place where you’ve been handed for free tangibles and intangibles that will change your life, where your eyes have been forever opened and your heart forever humbled giving you a sense of higher purpose and greater tolerance,  yes, even in this place people still take stuff. They take horrible advantage of generosity, so I want to make an effort to get these to patients only and I need to talk with this Target House lady about it. The picture tonight is of Eli wearing his own Eli shirt on one of his weepy walks around the floor today pushing his little IV pump stand and wearing his mask.

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