July 2, 2016, 11:48 p.m.
I've been tempted to take a video tonight but I'm too afraid that the kids in Aila's future 7th-grade class will somehow get ahold of it one day (middle school girls are so mean). When she finally fell asleep last night, it was nearly 1:30 in the morning. We could tell something not good was going on in her little body again. After her eyes closed and she slept, the evidence only mounted: dark, sallow eyes, rapid pulse, and in the later hours of the morning, her characteristic moans as she slept curled next to me. She finally awoke at nearly 1pm with a fever of about 99.5 degrees, saying that her belly hurt and her leg hurt and looking paler than she has in a while. We gave her oxy for the pain and later ativan for the nausea, but there were really only very brief periods throughout the entire day when she wasn't crying, yelling, or moaning. Brian and I stayed with her the entire day, and we thankfully had some help to entertain Zander and Declan. Zander went over to my father's at about 6pm, allowing Brian and I to wrangle Aila into a bath and calm her as best we could. She calmed enough by about 8:30pm for us to pack her and Declan into the stroller and take a walk through downtown Redwood City on the way to get Zander from my father's apartment.
She was mostly okay until we went to get Zander, looking sullen and lethargic but mainly quiet and calm in her seat next to Declan in the double stroller. She and Zander fought per usual about who would push the buttons for the elevator, and she began screaming again. It's now more than two hours later, and she's only stopped long enough to vomit up much of what she'd eaten today, choking as she sobbed in between heaves. After she was through throwing up, she began screaming and sobbing with force again and pacing around and around the Ikea kitchen island, a binky in her mouth and two in her hands. She's now been doing this for about an hour. Zander and Declan both looked to me for guidance while Brian held Aila over the sink to throw up, so I led the march to night diapers, sleep sacks, and topped-off milk bottles. Both boys uncharacteristically went right to sleep, with no fight or fuss. Almost as if to say to Brian and me that they get it, see and feel our strain..."How could Mom and Dad possibly handle any more?" It makes my heart ache that so early in their lives, our sweet baby boys are already taking care of their Mom and Dad. But I was grateful for and proud of 4-year-old Zander and 19-month old Declan just the same.
She's not on steroids right now--it's been six days since her last dose. So this behavior is a bit hard to interpret, other than as sequelae of her terrifically compromised immune system expending all of her "sane" energy to fight off some foreign viral invader. But the sunken eyes, the pale, pale skin, the fever that could rise at any moment in time, the absence of being able to blame this insanity on dexamethasone. Relapse? (No, of course not, that's ridiculous.) Relapse? (Maybe? Happens to so many leukemia kids.) Relapse! (Oh, God, what if it happens?)
About thirty minutes after I began writing this post, my sweet baby girl has finally stopped yelling. As long as we leave her be, in the spot where she has chosen. And she lay on the kitchen floor, binky in hand, right next to the trash can. She lay her short hair and her tired eyes on her cars and trucks pillowcase encasing the pillow she carried from its spot on the couch. She refuses a blanket, human touch, or pants, in a diaper and still gasping from so many sobs.
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