Aila
There is really nothing ordinary about watching your baby receive chemotherapy, no matter how many times it happens. Today was infusion # too-many-to-count, and Aila received vincristine and methotrexate. Aila has a port, and this is where she receives her chemotherapy. A port is a small plastic disc, about the size of a quarter, that was surgically placed under Aila's skin on the upper portion of the ride side of her chest. The port is connected via a thin catheter to a larger vein, but it's entirely underneath her skin. Aila didn't receive her port until the end of the first round of chemotherapy, as her white blood couldn't defend against the calamity of the minor operation. Before the port, she had a different type of central line (a PICC line), which required significantly more maintenance.
A reasonably common occurence in our home... Right now, it's 3:41am, and my sweet 3-year old baby girl, whose body is awash with toxins, lay wide, wide awake next to me. Staring up at me, with confused and curious blue eyes. "I want you seep with me, Mama," she keeps on saying again and again. She's tired, I can tell, but her little body has things that currently trump sleep on it's to-do list. And I'll be able to finally sleep, I know, when I see her tiny eyes finally at rest. Hard though, not to see a bit of humor in this, of course. Often there seems to be an odd competition among working parents in 2016 with regard to the hour that their small children are in bed--8pm is not great but okay to say out loud in mixed company, 7pm is exemplary, and if you're a family boasting 6:30pm.... And I'll confess that even running around like housework dogs after our day jobs, our three pre-diagnosis were not one night in bed before 9pm on a good night (shh, don't tell anyone). Maybe 3:41am is the leukemia version of 9pm?
Dear Ais,
I've literally lost count.
On Monday, Aila "made counts" with an ANC of slightly over 1000. It'd been a formidable weekend, with vomit everywhere and Aila and Brian down for the count (no pun intended). We were all frazzled and limp from the duress. By Sunday, I was reallly hoping that her ANC would be sub-750 and we would remain paused on the leukemia highway a bit longer, with a few days or even a week to catch our breath. Alas, Monday's ANC was an A+, and this ghoulish weekend became the closing act of Delayed Intensification. In all, Aila and her family navigated and weathered 77 DI days awash with 12 intravenous chemotherapy infusions, 2 spinal taps for CNS chemotherapy, 2 emergency late-night ER visits for fever, 18 inpatient days and nights at Benioff, and 4 blood transfusions. She received 5 different chemotherapy agents intravenously (doxorubicin, cyclophosphamide, cytarabine, vincristine, and pegasparagase), 1 (methotrexate) into her spine and up into her brain, and 1 (thioguanine) orally for 14 days. She took an oral corticosteroid (dexamethasone) for two separate weeks. 12/15/15-2/29/16, including Christmas and her third birthday.