A HUGE thank you to our wonderful friend and neighbor who had mulch delivered and spread on the hill that was weeded by equally wonderful friends and teachers in the community. This hill has NEVER looked this good and we really appreciate that we can focus on Max during the time we are away from the hospital and not worry about yard work.
Today marks the third dose of the third immune suppressant that we are still waiting to see work and shut down the GVHD. There has been no improvement over the past week in her gut, liver or eyes but this drug can take 2-3 cycles to start working and we hope it is just ready to go off like a firecracker and get to town in there. A new and very promising drug in the treatment of liver and skin GVHD was started a few days ago, Ruxolitinib, and we are also hoping that can calm down the liver stuff. Her bilirubin is just one number in the liver panel but the one that is the highest and that hasn't gone down yet, spiking to 34.3 yesterday and then back to 29.7 today (normal is .8 to 1.3). The downward numbers are only exciting if they continue for at least a week, to show a real trend, something that hasn't occurred yet. This new medicine was discussed quite a bit at a conference our doctors attended recently and is oral. I didn't know this before but there are many great meds that only exist in oral form. Tylenol and many pain relievers are good examples. Because Emilia's gut (GI tract) is so inflamed and sick, anything taken orally may not be absorbed and immediately expelled by the intestines. Since her gut was showing some signs of slow down in the output last week, they decided it was a good time to try this new med and HOPE it gets absorbed. It is unfortunate that so many drugs are only available in an oral form b/c it makes them unusable for people like Emilia who have to let their GI system rest and heal. So far she is tolerating the pill well and it doesn't seem to aggravating the system so we are hopeful it will start to drive the liver numbers down.
She still has the amniotic membrane contact lenses in place and we expect them to remain intact through this week. Once dissolved, they have to be removed b/c only the lense degrades and a ring stays in place over the surface of the eye, then ophthalmology will decide if they should put in a second set or if enough healing has occurred and she can be free of them. There is a fair amount of inflammation of the conjunctiva on the white of the eye so she keeps her eyes shut most of the time, even when she is awake and talking to us.
For all of Emilia's classmates and friends, please let them know that she spends most of the day resting and is still not able to see b/c of the special contacts she has in. I think some of the kids were wondering why she never texted them back or responded to Snapchat. We do read her cards and texts so feel free to send a card to our house or to the hospital and I will read it to her and she can look at it in the future. We do worry about how scary this must be for her classmates who can't see her or talk to her and aren't sure what is going on at the hospital. She takes lots of naps, listens to some music or cooking shows through the tv and chats with us a little bit. The nurses are so good with her and truly enjoy taking care of her. Hoping for some news in the next week or so. Thanks for checking in.