Monday, August 27, 2012

Eli's very last chemo transfusion being hand pushed.
  “Blessed are those who have regard for the weak: the Lord delivers them in times of trouble. The Lord protects and preserves them – they are counted among the blessed in the land – he does not give them over to the desire of their foes. The Lord sustains them on their sickbed and restores them from their bed of illness.” Psalm 41:3 Technically, Eli had his last day of chemo today. We did claim victory when we finished his “in-patient” stay because that is the high-dose hard stuff, but he had one more little “push” of vincristine. It only took about 5 minutes and it doesn’t make him sick, but a little sore. And it was a mucho longo day for Eli-o. (I’ve said this before I think, but when Eli was born, one of the girls’ favorite songs for us to sing at night was Old McDonald and when it came to the part about E-I-O, I would sing ELI, ELI, ELI-O and we still do and I don’t even know if they know the real words, I know Caleb doesn’t). His appointments started at 8 .m. and we didn’t get back to the apartment until after 7 p.m. Then I had to do his bath, dressing change, TPN and Lipids hookups, and meds. He was tired-o.
Our set-up after Eli's bath to have dressing change for his
line, and TPN/Lipids hooked up for the next 16 hours.
He sneezed, too, and I was about to freak out because he has zero immunity - as in not-an-exaggeration zero.  My nerves are just about shot trying to be so careful, and I am actually fairly aware of germs, but right now I’m like a walking bubble around him. He is so good not to touch things though, and that really helps. I can’t imagine having a young one that was constantly touching the rails, and wanting to play with the waiting room toys and then putting their hands in their mouth or rubbing their eyes. I cringe when I see other kids doing those things and I pay attention to what they then touch so we can stay away. I felt sorry for this one little daddy who had a nurse cornered (felt sorry for her, too) trying to get her to point him to a “backdoor” exit because his daughter was neutropenic and had VRE, which I think is an infection but is not contagious. He was a young slightly chunky guy with a baby face, always wears a big black cowboy hat and wranglers. He has an accent to match, but I’m pretty sure I heard him say he was from Missouri, so what up w’dat. He was speaking nice and polite, true to his cowboy “jeans”, but he was definitely shaking her down for a little extra help on the skedaddle. She was nice, too, but I could tell her patience was short and her patient list long, but he had her corralled. I hated to break it to him, but we out in the general herd are in the same neutropenic boat or wagon, I guess. (Wow, this guy wrote himself, didn’t he?) I heard her say several times, “Well, she just needs to wear her mask and just keep her from touching things, and keep her out of crowded areas, make sure to keep her  your hands clean. Ya know, you just got to be extra careful.” Poor guy. The little misses was there, too, pulling the wagon; no, a real wagon, like a Red Flyer wagon with the daughter in it. Anyway, in addition to the neutropenia, and chemo today, Eli had his bone marrow boost and had to have a platelets transfusion. Because of his history with cranial hemorrhaging, they maintain his count higher than they would usually require. He also had school, physical therapy, occupational therapy, speech, and we met with the nutritionist and met with a nurse practitioner and a doctor. I think that’s it. Tomorrow looks to be light.
Striking a strong-man pose after his actual last chemo.
In other interests, Ryan did go to Vanderbilt today, but came back home while the doctors request his files and review his history. Ryan’s mom is set to meet with them on Wednesday to discuss their opinion. Please, also add two-year-old Gabbi to your prayer list who has been found to have a rare liver tumor. Her parents are missionaries and the prayer request comes from the Estes church of Christ in Henderson, TN. I should have posted this earlier, but didn’t think about it-If you would like to do something for Hunter, the family has requested donations be made to the following: Pediatric Neuro Oncology for Brain Tumor Research, Children's of Alabama Department Neuro Oncology, Children's of Alabama, ACC 5120, 1600 7th Ave South, Birmingham, AL 35233

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