Torie had a kinda rough day today. She's on a medicine called Keppra to prevent the seizures that can be caused by the Busulfan and I think it's making her a little crazy. One of the side effects can be "altered behavior". She acts like she has 'roid rage! Her behavior is very much like her mommy's was when she was on phenobarb. Thankfully she only has 2 more days of it! Today she started on Cyclosporine (CSA), a medication that stops the action of specific WBC's that are involved in the rejection process. For BMT patients it's to prevent rejection or graft versus host disease (GVHD). Torie will be on this for about 9 months after transplant as long as she doesn't develop GVHD. If she does get GVHD, she'll be on it until it is treated and gone. So no GVHD! She also started mycophenolate (MMF or CellCept) today and she'll be on this until about 6 weeks after transplant. This is another drug to prevent rejection. Hopefully she'll stop hating taking medicine soon. It's gonna be a long haul! She has pretty much stopped eating...she's not even wanting "wobby milk" now. I think the TPN and Lipids are here to stay for a while.
She continues to amaze everyone with her energy. One of her nurses today said that every once in a while they get a kid that just doesn't seem fazed by the whole transplant process. Please please please let her be it! Thank you for all the mail Torie's getting...she loves opening it and taping notes and cards to her walls. And to the Mazon's and the Baxter's...thank you for the stickers! They were a huge hit!
Hey Friend... LAST DAY OF BUSULFAN!!!!! We are almost to the top of that hill, stay strong! Look forward to playing with you on the other side.
ReplyDeleteOOXX Josiah and family