Feb. 12, 2016, 10 p.m.
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.
Her fever amidst neutropenia is a little scary when we're home and not yet at the hospital. But once we're here...it really feels at this point like we're the protagonists in an old, familiar movie. The entire experience, with the exception of bed availability, unfolds with a great deal of predictability, sterility, and hassle. As I sat tonight with Brian and Aila in Room 2 on Floor 6 (the Pediatric Oncology and Hematology Unit) at Benioff, Brian said what of course we were all feeling. "This is getting old," he said, and I concur. I called my brother and his fiance from the car tonight as I headed up here and told them that it is feeling more and more every day like we are watching other people live their lives and grow....as we simply drive to the hospital and back, track side effects, measure out medications, and watch Aila suffer all in an idle and lifeless loop.
I think we're also worn out from being "that family," the one who is always in crisis. I long for one week or even day where my response to the question, "How are you doing, Victoria?" will be, "Good." And I'll really mean it. Or one where "balancing work and life" isn't code for "balancing work and chaos."
For now, she's (we're) on Night 2 at the Ritz with no end in sight. Resting not-so-peacefully next to me, as her temperature seems to be rising again.
Comments
Angela Tana 8 years, 9 months ago
I'm so sorry and completely frustrated that anybody expects you or your husband to function evenly partially at work. If I was either your boss or Brian's boss I'd let you guys have a paid extended leave of absence and I'd find you guys an awesome mary popping nanny (free to you of course). How much can any family take. It's pure misery Vicky. Considering how aweful things are I love the photo of you and your daughter walking the neighborhood. You still look young and your daughter looks cute despite just how horribly things are going. Come on little Aila get better (at least no more fever) for you and your family.
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