Back to Hackensack

Anna was treated as an outpatient for GVHD (Graft Versus Host Disease) on Wednesday and Thursday. After a couple of days, it didn't really appear that things were getting much better. Certain parts of the rash were turning from red to brown, but the rash was still present and possibly spreading. By Friday, the Doctor decided to admit her for further observation over the weekend. The decision really didn't come as a surprise and Anna had already packed a bag. So, she's back up on the same unit and getting settled back in.
Over the past couple of days, they've continued to treat the GVHD and try to get it more under control. At this point, certain parts of the rash seem to be drying up, but it's really beat her up pretty good. Her mouth, throat and lips have sores, which makes it impossible to eat anything at all. She manages to occasionally sip on a protein shake or chicken broth, but really hasn't had much at all. As such, she's dropped a few more pounds and seems to be headed for below 100 for the first time since her initial diagnosis. The Infectious Disease doctor stopped to confirm that the activity in her mouth/throad/lips area wasn't something else. They ran some cultures, and we should know more about that but as of now, it appears to be GVHD related.The GVHD is likely also impacting her stomach, liver, intestines, etc... but thus far, the rest of her numbers look pretty good.  I suspect they'll run some more tests during this week to confirm the current status. The Doctor is optimistic that they'll be able to get the GVHD under control, and it's a matter of time and finding the right combination that works in her case. Hopefully, it'll be soon as she's definitely in some discomfort this past week.
With the way things have progressed, they do not want any visitors at all at this stage. So, please do hold off if you were thinking about stopping by.


Stephanie H's picture

Yet another test on this bumpy road

I despise hearing about this latest struggle with GVHD but I believe the right solution will be identified and the problem managed. I just wish it was not so painful and absolutely dreadful for you! Plus I know you'd like some real food - darn it!
I've moved on to the second tier of candles at church and have been lighting them faithfully in your honor. The healing vibes, healthy wishes and many prayers will continue to be sent your way. Here's to progress, pain management, and good health. Sending love to you, Tom and TJ. Hugs!!!

Ira Goodman's picture

You are a warrior!

Hey Anna and Tom. So sad to hear this news. Hang in there, as your doctors will figure out what they need to do to bring you back to no GVHD, Love and Hugs, Ira and Chris

maltamamma's picture

Sorry to hear all that is

Sorry to hear all that is going on. When I don't hear back from Anna for a while, I check here before I start to worry :]
I don't have any words or solutions to take you discomfort an pain away and make it better. I'm sure the fact that you had to leave your home and TJ again didn't help any. Flippin FOUL filth foul flippin flith!!! argh! enough already!

OK Im done. Hang in there. We love you, Urs & DMoney xo