Aila
The steroid pulses of Maintenance have begun. Pulse 1 complete, 4/26-5/1. I'm trying to think of a good analogy for what it's like to be with Aila as the steroid builds day after day in her little body, and then WHAM, it's gone. The slow build-up is kind of a predictable throb with a cadence all its own. Her little eyes turn beady after one or two doses, and she immediately begins sleeping curled up against my body at night the way she used to when she was an infant. Almost immediately, her body seems to say, "hey there, I'm scared. this is scary," long before she is able to verbalize it. This happens days later and lingers even when the dex has been yanked, seemingly because of the mighty glucocorticorticoid's long stay in her little body. Scared of Zander's loud laugh. Scared of the thud when Declan drops his milk bottle. Scared that the ceiling lights will fall on her head as I change her diaper. Really, really, really scared. Screaming--trilling really--with a terrified look in her eyes more suited for someone who is on the brink of being kidnapped or set on fire by a gang of marauders.
Last night, Zander and I went to Safeway in Redwood City to get sandwich cheese, goldfish crackers, and two Matchbox cars. In other words, a quick trip for the essentials. There was no line at the self check-out registers, so we began scanning our items. Of course, something went wrong and we needed the cashier. Zander walked over to get her, announcing as she looked down at him, "My sister's sick." It was an interesting moment, and I thought about it long after she cleared our computer and we left, matchbox in hand. I actually don't know how she reacted, as I wasn't watching her. I was instead watching Zander, whose eyes were so simple as he looked up at her to tell her the only truly important thing in our lives. He sort of glanced at me after he said it, and I nodded, saying that yes, she was. And he was more or less satisfied with that answer. Neither of us elaborated.
God, we're tired of this endless routine. Truly tired, indelibly endless. Chemo on Tuesday, crazy Aila on Wednesday, fever on Thursday. 99.5, 100.4, 99.9. It's early Friday morning. Is it going up? Down? When it's over 101, then we call and take her to the ER 100% of the time. Is it a fever that matters? I hate to sound so callous, but sometimes I feel like we're protecting the liability of the medical establishment rather than the well-being of my daughter. From the get-go, my friends in college told me that I was "jaded," and I always hated that moniker. But I think it's true right now? Miriam defines "jaded" as "made dull, apathetic, or cynical by experience or by surfeit." And wow, there has been an abundance of hospitals, doctors, needles, antibiotics, vitals, drugs...a sure surfeit. And yes, we are sapped.
8/8/15 - 4/8/16. Today marks exactly eight months since our first metamorphic trip to the Stanford ER. Feels like yesterday, but somehow 245 days have come and gone. Stanford doesn't have a pediatric ER, but they have a separate waiting room for kids and families, where Aila and I sat and waited for several hours. I remember everything about that room, like it was yesterday that we were sitting there. There was a television on with a no-name cartoon. A little boy with a cast on his arm sat next to his father watching the cartoon. There was also a mother and her daughter sitting close to us. I remember thinking that it seemed like they had been to the ER a lot, because the mother seemed at ease and had even brought snacks. At the time, that confused me. ER means emergency, after all...who has time to pack snacks and be calm? Now, I am that mother.
My father took her for a routine, pre-chemotherapy blood draw on Tuesday afternoon, and we had no reason to expect any surprises. But her ANC was a wobbly and precarious 500...neutropenia again. We were surprised, and I think UCSF was as well. But everyone's different in their response to chemotherapy, and my sweet little girl had to go back for another draw yesterday. This time, her ANC was 700. Still dangerously low for immunity's sake, but high enough that chemo would continue. Later today, Brian will take her to Benioff for first a spinal tap, again under general anesthesia, where she will receive methotrexate. After, they'll head to the infusion clinic for infusions of vincristine and more methotrexate. Luckily, they'll access her port while she's under, and her fright can be avoided.