Shopping at Safeway

April 24, 2016, 10:45 p.m.

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.

I've noticed another interesting phenomenon developing in Zander's speech lately, too. He and I will be talking about something that we might do, like go to the park or to the store. And he'll begin talking about how "us used to do that for a long time before Sissy got sick, right Mom? Right?" I usually have no idea what he's talking about, but I often nod and say, that's right, Zan. This happened maybe four or five times this weekend, and I think what he's probably trying to say, in 4 3/4-year-old talk, is "life was different before Aila got sick, right Mom?" And he's absolutely right. It was. Even earlier tonight, during a "tubby" at my father's apartment (he's got a giant bathtub that Aila and Zander love), a bandaid covering a mild scrape on Sissy's knee fell off and she began screaming. Aila likes it best when visible scars from any lingering injuries are covered, with a bandaid or clothes. Out of sight, out of mind, and she can carry on with her play-doh or her cars or her chemotherapy infusion. In fact, between infusions, she refuses to let us remove the bandaid that the nurses have placed over her port, where it was bleeding when she was de-accessed. Anyway, Zander started screaming for us, saying, "Hurry, hurry, it hurts Sissy!" Fun in the bath ended.

What is hard not to love about kids is their credulousness and purity. After all, Zander told that nice Safeway cashier exactly what I want to say before I enter any room. When I buy cheese at Safeway, lecture to graduate students, have a conversation at the water cooler with a colleague I hardly know, or when I buy a Coke Zero from the work cafe and the owner asks "How's the family?" Having seen me pregnant (and still buying Coke Zero, mind you) three times in succession, he's well aware that there must be a family somewhere. The same question, every single time...and every time, I give the same (untrue) answer. "Fine" or "good." I've even fantasized about having a shirt made. It would say, in bright colors, "My daughter has acute lymphoblastic leukemia. Assume I am thinking about it," or something like that. Would just be so much easier to share the facts first, as Zander did at Safeway, before we get down to the task at hand, whatever it may be...picking up drycleaning, answering questions about grades, responding to emails, having conversations about academic endeavors, talking about Donald Trump, or discussing with the cashier at Whole Foods when she thought that the pizza oven might be fixed (good god, let it be soon).

This week we float into Maintenance. Today, I spent 30 minutes on the phone with Aila's oncologist, trying to figure out why her liver function tests have been elevated for the last month. Seems likely that her liver may have reached its maximum tolerance for methotrexate. But per protocol, she will march on. Brian and Aila will head to UCSF on Tuesday, where she'll first have a spinal tap, launching methotrexate up her spine and into her brain once again. Next, she'll receive an IV infusion of vincristine before the nurses deaccess her port and she receives another bandaid that will cover her port. This last time it was a bandaid with a strawberry on it, so I have said every day, with a chomping motion and amidst her laughter, that "I'm going to eat your port!" What will the next bandaid bring? Later that night, she'll take the first dose of twice-daily 6-mercaptopurine (6-MP), here to stay until the far-away end. And (duh duh da duh...) probably most importantly, five-day, once-monthly dexamethasone "pulses" begin. Zombie Aila will return. Have already stocked up on pizza, pasta, and sausage, as well as reconnecting with our thick-skinned armor against our tiny angel telling us, "you go away" again and again.

And yet, there were moments of normal this weekend. Well, our version, I suppose. Zander hugging Declan (way too tightly), Declan laughing uncontrollably at his new ability to say "hi" to anyone in his path. No vomit, scant diarrhea, a lot of singing a song for Zander's upcoming preschool graduation, and Aila telling me over and over, "I love you, too."