tom's blog

Moving forward...

Things with Anna have been progressing in a positive direction. The pneumonia seems to be behind us, and the GVHD is much more under control. Her skin has been peeling, and then the new skin is pretty close to normal. Feels kinda baby-soft and is slightly red, but other than that, it looks pretty close to normal. She's on a pretty heavy dose of steroids, so with that she's eating quite a bit... though due to her stomach issues, her weight has been remaining about the same. She definitely doesn't have that frail, sickly look these days... Her hair is even starting to show signs of coming back. She's been rocking the Yankee cap for quite a while now, and I suspect that'll stick around for a while. All in all, the doctors are pretty pleased with her progress. The last big thing was this stomach issue, which they diagnosed last week as c.diff (Clostridium Difficile). The meds seem to be working pretty well to treat stomach issues.
The past few days, they've started to cut down on the IVs and move certain meds over to pills. That's normally a sign that they are looking for her to get out of here in the near future. If the stomach thing continues to get better, and if there are no other surprises, she'll hopefully be going home towards the end of this week. It's all subject to change, but that's my guess at this point.
It'll be good to hopefully get home soon. I know she's ready to get home and see TJ, and be a mom again. The last few months have been pretty tough on everyone. From the time I've spent here, I personally feel couped up. Definitely need a few good nights out, and then some spare time to just hang in the back yard.
Happy Fathers Day!

Another week goes by...

Anna's still in the hospital and probably will be for a couple more weeks. It's really a bit too soon to even start thinking about coming back home.
I think somewhere around Tuesday of last week (June 1) was probably the low. The rash was really bad, and her mouth/lips/etc were a complete mess. She went several days without being able to eat at all, so they installed a PICC line (peripherally inserted central catheter) to give them another access point to flow some additional nutrition, medicine, etc. After Tuesday, she started to show gradual improvement and started having a little bit of food again over the weekend. Also by the weekend, her energy levels started to increase a little bit and by Sunday she was occasionally going for a short walk around the unit. She's been eating a fair bit of ice cream, popsicles, and protein shakes, as they tend to go down the easiest. They've run a bunch of tests, and while most of this is GVHD related, she also did have an infection of some sorts that they are treating.
On Monday, she started to feel like she catching a cold, so they ran some more tests on that. Turns out she had a little bit of pneumonia in one of her lungs, so today she went through some minor surgical procedure to clean out some of that. Given that her immune system is so compromised they really stick on top of every little thing, run constant tests and are pumping her with a combination of everything. When I was leaving this evening, she had 5 different things going in via IV at the same time. I'm amazed that they all play nice with each other, but they definitely seem to know what they are doing, so I keep my mouth shut.
Emotionally, it's been a bit of a roller coaster... Last week when she hit her low, it definitely was a tough period. It was the first time in a while that I felt really scared, mostly because they really didn't seem to have things under control and it seemed to be getting worse by the day. Once we turned the corner, I think we all felt a little relieved, but then the pneumonia stuff really isn't something to mess around with. Plus, the steroids really have a crazy impact on her mood. Definitely makes the normal roller coaster even more dramatic with higher highs, and lower lows.
Things at home are going pretty well. TJ's been adapting, and speaks to Anna a couple times a day via phone. We haven't done much skype lately, but hopefully we will pick that back up again once the rash settles down and she gets a little more comfortable. It's so nice to be greeted every night back home with a big hug and kiss. I can't wait until Anna can experience the same.

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.