tom's blog

Ups and Downs

Anna had a great weekend at home, and had been showing some really good progress. Her numbers on Friday were very good and she was feeling pretty good. The steroids definitely had an impact, and given the size of the dosage had been impacting her sleep. Other than that, all things were looking pretty good.
On Monday, she started developing a bit more of a serious rash, which generally is an indication of GVHD -- Graft Versus Host Disease, which is when the new healthy immune system (from the donor) attacks the body - or more specifically the skin, stomach, liver, intestines, etc, etc, etc. By morning, the rash had definitely spread and was pretty visible on her entire upper torso.  We had a scheduled follow up appointment today (Tuesday). The Doctor checked her out, and decided that it was time to step up treatment given that the current regimen of steroids and some other stuff weren't controlling the GVHD. The Doctor wanted to proceed with a new regimen of rabbit serum (yeah, rabbit) administered over the next few days. Yeah, the whole rabbit thing kinda threw me for a loop, but at this point if they said that I should snort rat turds, I'd probably do that (after doing some research, or course). The Doctor's initial preference was to have her admitted as this is a pretty serious situation (both the early/acute onset of GVHD and the symptoms from the serum). After a bit of an emotional discussion, the Doctor agreed that she could start this as an outpatient and see how she handles it over the next few days. So, we're kinda day to day right now with regards to being home.
We always knew she was high risk for acute GVHD, given that it was unrelated donor and 9 out of 10 match (not 10/10), but we were optimistic that we wouldn't head down this path. But, this is where we are and we're not out of the woods yet. I continue to remind myself to keep well grounded, and not let the highs get too high and the lows too low... but today sucked.


Anna made it home today... woohoo! The early morning nurse gave her a heads up that her numbers were looking good. The Doctor came in around noon, checked her out, and let her know that she was good to go. After that, they still had to go through some of the formalities, and had to remove the triple lumen thing that they had been using to administer treatments and other IVs. She was pretty nervous about that one, but happy that they removed it before she was discharged as it really makes it difficult to shower, etc. I picked her up around 3:30, once everything was done. It was pretty emotional picking her up and leaving the hospital, but seeing TJ for the first time was even more emotional. It had been quite a while, so it was good to see the two of them together again.
So, she's home and has a bunch of meds that she'll need to stay on for a while. The first follow up with the doctor is on Friday, so we'll see how the next couple of days go. Everything really has gone just about as well as we could have hoped for. Obviously, she's been through some tough days, but we were really fortunate to find a viable match so quickly and get her in/out of the hospital pretty close to the "best case scenario" time line. She's on some pretty significant restrictions (ie. no visitors, no going outside, etc), but at least she's home. We took a giant leap forward, and back to some degree of normalcy today.
I'll write more later this week. Just wanted to send a quick update to let everyone know that she's home....

Almost home... maybe...

This past Friday was the "best case scenario" for going home, and she didn't quite make it... but was close.
Last week was a bit of a tough week. She was running a fever for a few days, which really beat her up. Tuesday was probably the worst day. Things got a bit better on Wed/Thu, and they were actually considering sending her home on Saturday. Unfortunately, she had some stomach issues set in and they wanted to ride that out. She lost a few pounds over a couple days from not being able to really eat anything at all. By Saturday she really started to bounce back, and they were targeting Monday as the day. When they ran their normal blood work, they noticed her liver functions were exceptionally high. This could either be a side effect from one of her medicines, or it could be GVHD (new stuff attacking the vital organs). The doctor had her stop taking one of the medicines and decided it would be best to keep her for another day. She probably could have convinced the Doctor to let her go home, but that really only would have increased the likelihood that she'd need to be admitted again within a few days. So, rather than have the tease (and drama), of going home and coming back, she stayed at the hospital. We'll see what the numbers look like tomorrow and then go from there.
At this point, I'm really not sure what to expect any more. Early on, she was doing much better than I expected. Then, when I expected her to bounce back, she hit a bit of a low with the temperature, then when that cleared and we expected her to bounce back, the stomach issues set it. Then,  I think we're all clear for today and it's just a formality of getting out of here (she packed and everything), then some liver functions are irregular. Definitely been one heck of a roller coaster.
Things at home are going well. Norma (new person helping us at home), has been doing great. TJ is adapting, but definitely misses his Mommy. Hopefully, we'll get the "all clear" soon and get started with the outpatient portion of the treatment.