Aila
Drs. Mignon Loh and Jean Lee woke Aila and me in our shared twin hospital bed on Tuesday morning, claiming "good news." Her neutrophils hadn't climbed, but they had decided to let us go home after thirteen days in the hospital. I was grateful for their decision, no doubt. But truly, her blood looked minimally different from seven or eight days ago, when the fever had first subsided. So I'm not sure why we were made to endure another week in the hospital.
Well, it happened. Brian and I had an unsavory, unflattering, extremely loud, knock-down drag-out fight last night...in Aila's hospital room. It happened a time or two when we were inpatient at Stanford for a month, but at Stanford the nurse never came into the room, asking a little too politely, "Is everything okay?" Of course, the simple answer is "no, nurse, not at all." But I didn't get the feeling that she wanted much more than agreement that we fight quietly if we were insisting on staying the course. Truth was, I mainly just felt shame that we were fighting at all, which feels weird to write since when I think about it, I am often impressed that we're not fighting more often than we currently are. A lot of things aren't going quite as planned, after all. When that nurse came in to our tiny hospital room, we had been living with Aila there for ten nights and eleven days. It was Sunday night, and I'd been at the hospital since Friday. Brian had the boys on his own all weekend and had just now brought them up to Benioff so that the three kids could share their first visit in a week. I was stir crazy, exhausted from sleeping in a twin hospital bed, and frustrated that Brian was running later than he had promised (I mean, it's SO EASY to get two tiny brothers fed and bathed while simultaneously packing for multiple nights in the hospital...I can't imagine how he got held up). Brian was frustrated that I was exasperated. The kids were all yelling, there was Play Doh and crayons all over the floor, and I thought I was going to lose my mind. Literally and truly, I thought that my mind would just fly out of my head, like a chicken out of a coop. It was not my finest hour, and I felt shame when that nurse witnessed our agony.
Tonight is the sixth consecutive night in the hospital. Aila's fine, for the most part. She had a fever the first two nights and needed another platelet transfusion and a red blood tranfusion. A virus panel confirmed that a metapneumovirus, an upper respiratory infection with cold and flu symptoms, caused her fever. But for at least the past 72 hours, she's been fine with the exception of being unable to leave her 10 x 12 hospital room and being connected to a pole that's plugged on one end into the wall and into her chest on the other. And you know, she hasn't got a ton of white blood cells, which should come as no surprise to her doctors since they administered the cell-destroying chemo in recent weeks.
We're back at the barn. After a very long week including three outpatient blood draws at Sequoia Hospital and a platelet tranfusion at UCSF, Aila developed a fever around 9:30pm last night. Brian methodically took a shower, we packed our hospital bag into the car, and Brian and Aila drove away into the night, in the general direction of the UCSF Benioff Pediatric ER. They didn't have any beds, so they kept them in the ER until about 4:30pm this afternoon. I drove up to relieve Brian early this evening. It seems that we might be here for the long haul, as this time (unlike all other hospitalizations since the first) she is neutropenic. Her ANC last night was 140. They will let us leave only if her fever is gone for 48 hours AND her ANC climbs above 500. That took 28 days during the first hospitalization, but of course the circumstances were different (i.e., undiagnosed leukemia and pseudomonus). Still, it could take some time.
A lot of good things happened in my life today, and I'd like to note that none of them had to do with work or achievement and all had to do with connections and people, near and far. I learned (via text...but really, how else would this happen for working, busy, people? What DID we do when we didn't text?) from one of my oldest Bristol friends about how he had made a significant change in his life, altering its course. I watched my daughter make me a "play" pizza during her physical therapy with her "walking doctor," offering me only one slice (only one, Aila?! really?). I went for a short run, and although I felt every bit of my prolonged sleep-deprivation and almost-40ness, I was grateful for the time in the sun. It was one of those February Bay Area days when the sun is shining and it feels like summer (and those of us from Bristol, CT feel very out of sorts, but happy to wear shorts?). And at Stanford today, a place I have found to be so focused on achievement and gold stars, I spent the day having meetings, coffee, and soup with women (all women!) whom I respect, admire, and appreciate. And just now, as I began to write this post before I go to sleep next to Aila, I read a note from a very close friend from graduate school, from whom I've been estranged, which stopped me in my tracks for a moment.