Two steps forwards, five steps back

It’s hard to understand what’s going on, and how Kauser is really feeling. Things are always changing and her numbers have come down and back up again. There really are no clear expectations and even taking it day by day is getting difficult.

She goes from extreme drowsiness to waking up in pain and confusion. She had some sort of a GI bleed that seems to have slowed significantly but has yet to halt completely. Her liver got better for a few days and is once again slowing down, this time taking her kidneys with it. Her breathing is also getting hard as fluid slowly builds up again. It’s really hard for to talk with her mind so foggy from the drugs and her mouth so dry for still being on gut rest.

As usual, the medical team is on it, trying to keep her stable and force a turn for the better. The doctors have adjusted her medicines to deal with the seesaw of effects but remain hopeful, and we are constantly asking them to help remind us what positive signs to be hopeful for. These goals are really important for us to understand, and to let Kauser know how good she’s doing even when it’s not so great.

At this point, they’ve started a few new antimicrobials because they are suspicious of a CMV infection in her gut (this is a virus we all have but tends to get nasty in BMT patients). They also are starting her liver med, defibrotide, which they paused for the bleeding, while they aggressively watch her numbers and what it takes to keep her stable.

We knew it was gonna be rocky but for now the best sign we can have is a few good consecutive painless (or pain-minimized) days and some up trends on her labs. It would quite literally be a turning point in this whole thing.

Despite all this she remains a bit of herself, making sure her pain grunts aren’t annoying, telling us to not to worry when we seem upset, and commenting how nice the plants look outside. Once a day or so she sneaks in a smile and it for that brief moment the worries melt away. If you’ve seen her smile you’d know the feeling too.

Please continue your well wishing thoughts and prayers. She needs it. We all do.

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