Day 222

Here's the thing about transplants. There comes a time after you've gone home that you think life will eventually be "normal" again. You've got the medicine down to a science, you only have to go the the hospital every couple of weeks, you've even had a couple of playdates. Everything feels like it's coming together and you're moving past that fear rooted life you'd been living for so long. Then your kid stops eating. The tummy pain comes roaring back. And when you take her temperature and you see she has a fever you can feel your heart land on the soles of your feet.

Things have actually been running pretty smoothly for the last couple of months. No soul chilling issues, labs are good, and the meds have slowly been going down. Tessa's level of activity is still low, and we still have to be super careful about germs and she has to wear a mask indoors (houses are generally ok). But, her swelling has gone WAY down, she's getting hair, and she is smart as a whip! Her favorite game is still Make the Babies Talk (Casey and I have pretty much been completely depleted by this one), favorite color is still dark pink (not light pink, dark pink), though her favorite princess is now Belle (mostly because my Aunt Julie sent her the most incredible Belle gown, which is her primary ensemble these days).

But to stay current and not overwhelm myself trying to catch you up on the last few months... Tessa has had styes in both her eyes that have lasted for about a month and a half. Of course, without an immune system it is difficult to fight anything off but with every blip in her health comes the fear of GVHD (graft versus host disease- her body rejecting her transplant). We have had several trips to the doctor to keep an eye on these babies. Then this last week Tessa stopped eating, her tummy pain flared, and she came down with a fever. We went to the hospital on Monday (we were there from 8:30-3) and got home at 7 that night. She saw her regular transplant doc who informed us that if she hadn't made progress in 48 hrs (eating, solid stool) she would have to be admitted and have a scope to check her GI track for GVHD (this would mean a return to steroids). Tessa also got to visit the eye doc who reported that her styes do not look like GVHD in her eyes (phew!) but that she has developed a cataract in her right eye as a result of prolonged steroid use. Ugh. Yesterday morning (Tuesday) I got a call from the doc saying her IVIG levels (a measure of her immune system) were low and she needed to come in for an infusion today (Wednesday). So we will be back on the road 36 hours after getting home. Good times. The good news is that she actually ate yesterday and seemed to have more energy. Hopefully this will mean that she won't have to be admitted today and that we will be able to leave after infusion. 

Please keep a little space in your hearts for Tessa today as she is evaluated by docs, pray for no GVHD!!! 

Happy girl at her cousin Kelly's wedding

Who's that cutie?

Exhausted girl waiting for her pokes at the hospital