Day 10: Another bump in an already bumpy road

Expected and unexpected consequences of the transplant

We haven’t really updated in a while. Kauser’s energy levels have been pretty low, and she hasn’t felt like writing. I also started work this week (remotely), so my computer/writing time usually gets consumed. Up until just a few hours ago, there wasn’t much to report on either.

For the last few days the mantra has been “no news is good news” and the newer, awful symptoms such as mucositis (the inflammation and pain of the mouth/gastro track), constant blood transfusions, and general pain and discomfort were all expected parts of the process, especially in this part of the process. Nothing to worry about, according to the team, again, all “normal” while the new cells graft.

What’s new, and somewhat concerning, is the pain she has in her upper right abdomen where the liver is. This, on top of some elevated levels on a blood/liver test, and an ultrasound indicate some inflammation and possible occlusion in the liver, indicate what is referred to as sinusoidal obstruction syndrome (SOS) or veno-occlusive disease (VOD), although its not really clear how bad it could be or if that’s really the case. Its considered a rare side effect of the toxicity of chemotherapy, and fortunately, is pretty treatable. Even though there aren’t conclusive results, the Stanford team is pretty preventive and started treat it.

Because her symptoms showed up just today, it’s really great that they caught it early and have already started intervention. It could potentially get worse before it gets better, but she’s on the medicines that help protect her liver and is on meds to help pee out her extra fluids, which helps the symptoms.

“Indeed with every hardship comes ease.” Quran, 94:6

Its hard not to be worried, and even a little scared. It helps to hear other stories from the doctors and success cases; and it sounds like the scary statistics that I might have read online were not analogous to what this team has seen. She feels ok, but she’s on so many pain meds its pretty hard for her to feel much of anything but tired.

I’ll keep you all posted, but as usual, your prayers and good thoughts are greatly appreciated.

~ Ibu