Day +286: Mina healthy, Isaac not

Mina Brigitta got a clean bill of health at her checkup this week, despite having had some sniffles and a cough over the last week or so. She saw Dr. Loh this time, her oncologist, who said her ears looked great and her lungs sounded clear. She also remarked about Mina's face looking less puffy. The veins in her upper chest also seem less prominent these days, so it looks like the blood is flowing again. This was the first time that Mina Brigitta had to have an IV placed to receive her medicine. We talked about it some beforehand so she definitely knew the poke was coming. Keri said she cried, of course, but was a very brave girl. Unfortunately they weren't able to draw blood once the medicines were done, so they had to go back today for another poke and a blood draw.

The good news is that when the transplant doctors talked about Mina's case during their Wednesday meeting, they agreed that, because she hasn't shown any signs of chronic GVHD, they could start tapering down her Cellcept! Cellcept is an immuno-suppressant and is the primary reason why Mina has to get the pentamidine every other week as a prophylaxis against a form of interstitial pneumonia that can occur in immuno-compromised patients. They put her on a month-long tapering schedule, and my understanding is that once she's done with it, she'll either be able to stop taking pentamidine or switch to an oral drug. She'll still need monthly treatments of IV immunoglobulin because the latest results we got back this week still didn't show enough B-cell function. They'll check again in a month. The bad news is that she appears to have another c. diff. infection in her gut. We had kind of been expecting it after she was on amoxycillin for a week, but it took a long time to show up so we were hopeful she would avoid it this time. She does not like the Flagyl she has to take for it, and it's no fun changing four or five poopy diapers a day, so it's a drag all the way arouond.

Isaac isn't faring quite as well this week. He's had a juicy cough for a week or so, and he was feeling pretty bad on Sunday with a fever of 102. He perked up again earlier this week, so we thought he was moving beyond it, but he was miserable and feverish again tonight. Keri will probably take him to the pediatrician tomorrow if he's still feverish to make sure he's not developing an infection. He's pretty good-natured when he's up and around so it's a bit hard to tell how bad he's feeling. But her cries a lot more than Mina ever did at night and he doesn't like being uncomfortable when he's trying to sleep, so it's been a bit of a rough week for Keri. This is the second time both kids have gotten sick at the same time and Isaac has gotten by far the worse of it, so that leaves us feeling pretty good that Mina is well-protected with the IVIG and acyclovir.

Mina's play games are becoming more and more elaborate. She's been saying for a while that she's daddy's cat. She doesn't meow or scratch or anything, but she's very insistent that she's a cat. Lately she's started being other animals too. Everything is very serious. The other day she was changing Waah Baby's diaper, and left the "dirty" one on the floor. Later I tried to put that one on her, and she was very insistent that I not do it. "No, that one's poopy!" she kept saying. She also is doing "makeup" now. She takes an empty spray bottle and squirts it on her face just like Momma does. I'm also still finding little plastic bags filled with washcloths and other things around the house. Tonight I found one with a little wooden mailman in it. I was also picking up her demin purse and peeked inside to find a set of plastic keys, a little "makeup" container, and a syringe. Another funny thing she's doing lately is moving chairs around. Tonight I had to collect the dining room chairs from all over the house and put them back by the table. She is very very busy in her environment these days. It's really fun to see.

Isaac is doing more and more things too, of course. Teri and the kids brought down a little aluminum pot and pan set, complete with spatulas, whisks and a colander. Isaac loves that thing. He's just starting to really put things in other things, so he loves putting something in a pot, closing the lid, then taking the lid off and taking it back out again. Mina got a set of realistic plastic figurines for Christmas from Katy, Awais and Emma, and the other day Isaac was filling up his dump truck with them. Mina still likes to play on her own and Isaac doesn't understand that, so there's some conflict. But they're starting to play together some too. The other night Mina was frustrated when I was reading a book, so she squealed "Read!" and kind of smacked the book with her hand. Isaac was in my lap too and he thought that was hysterical, so he started saying "Ree" and smacking the book. This has become an ongoing game, them taking turns saying "Ree" and smacking the book. It's a bit annoying, but it's also a brother-sister bonding moment, so I'll let it go until I really can't stand it anymore.