May 4, 2016, 12:06 a.m.
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.
Today alone, Aila ate somewhere between 12-15 breakfast sausages, four cups of yogurt, eggs, soup, cereal, pizza, and pasta all in large quantities, and probably a bunch of other stuff that no one wrote down on my "Aila" chart, where we record her food intake, poop frequency and consistency, medications delivered, and whether or not she has vomited that day. During the first month inpatient, when she got dexamethasone twice every day, we kept boxes of sausage in the hospital refrigerator for regular cravings. Tonight, Brian and I were cleaning up the kitchen when she screamed from the bed for "more sausage," around 11pm. We rushed around, heated two up in the microwave, hustled them into her in a paper cup...and by some miracle she had passed out on the bed. Relief. I instinctively gave the sausage to the dog, and Brian kind of yelled at me, worried that she might wake up and need the sausage. Sausage is not something to thoughtlessly be squandered in a dog bowl, after all. Not in our house, that's for sure. Good grief, Cosgrove, get your priorities in order.
Maintenance also means the kickoff of nightly oral 6-mercaptopurine (6-MP, for those in the know) and once-weekly oral methotrexate. Like dexamethasone, more cytotoxic drugs. Myelosuppresive, immunosuppressive. Basically, drugs that kill blood cells that Aila needs (by interfering with DNA and RNA synthesis and a whole host of other miscellany) in hopes that they are also killing the ones that she doesn't. The ones that are actually killing her. I write this in simple language not to be a smarty pants, but rather because I frankly had no real idea that this was how chemotherapy "worked" before walking alongside (well, carrying more often than not) Aila during the last nine months. Hell, I didn't even really know what leukemia was that night in the ER when the doctors first used the word. Some vague image of a bald kid in an ad. Wait, didn't I sell magazine subscriptions as a kid to raise money for leukemia? Or maybe that was for my softball team. Ack, I can't remember.
I'm grateful now that I didn't know very much at all back then. I do now, but I've had some time to swallow reality, reminding myself a thousand times a day that Aila needs her mother. If I had known in August all that I know now? I would have probably started crying and maybe never stopped. Which would have made it difficult to advocate for Aila during our gazillion nights in the hospital, or explain to Zander what's happening to his sister, or to ask for and receive all the help that we have so deeply needed and profoundly cherished. And let's be honest, someone has to microwave the sausages.
Sweet baby Aila, I am sometimes as a human afraid to love you as much as I do, which is more and more each day. As a human, I am scared that you might relapse. And that during the next go-round, there won't be any treatment protocol to follow, no yellowbrick chemotherapy road to frolic along. I am scared that you might die. There it is, in writing. I can't take it back or deny saying it if it's in writing. Really though, how silly for me to think that I have control over my love for you, Zander, or Declan. Boundless, bottomless, infinite, and immeasurable love. And whatever happens--5-year event-free survival, relapse, even death--that love wins. A simple truth. That love wins.
Comments
Angela Tana 8 years, 7 months ago
Vicky this is so beautifully written. You are so right. How can you control any of this? Her outcome, your emotions, her sausage cravings? You can't. You just have to experience it all. My kids have been on dexamethasone for a few days at a time and man talk about craxiness. Screaming all night long as if they are being tortured by some invisible being. Please give little Aila an extra kiss tonight from me.
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