Aug. 19, 2017, 11 p.m.
The two year anniversary of Aila's diagnosis came and went on August 8th. It was an unremarkable day with remarkable overtones. So much has changed since August 7, 2015. And sometimes it seems that we've been doing the same thing over and over again, in an endless loop, for seven hundred and thirty days. Chemotherapy and CBC, dexamethasone, virus after virus after virus, ativan, risperidone, benadryl, benadryl, benadryl, sulfa, atovoquone, 6-mercaptopurine, methotrexate. Medicine, medicine, medicine. Chemotherapy and CBC again...this time neutropenia. No, no, no! Chemo hold! And back on physical lockdown, Aila. You can go outside but not to the grocery store or library. Ah, don't touch that! It's so dirty! Sanitizer, cleaning products, more sanitizer. Wash your hands! Why are you crying. And crying. And screaming. And crying. For hours and hours and hours. "I want Mama pick me up!" said amidst fear and terror and sickness. Again and again and again.
I'll be honest, I sometimes get stuck in my own exhaustion and sorrow. With trying to pretend that everything is fine and normal. Just another regular old family day with puke and antipsychotics and psychosis. Who wants to get ice cream!? I get tired of using all my might just to keep propelling myself forward with life, when I often just want to stay curled up in bed watching Law and Order. The problem with getting caught up in my own exhaustion is that I am unable to see the exhaustion of the people I love. Brian. My children. But today--four days after her most recent infusion of vincristine, four days into her dexamethasone pulse--I could see it as clear as day. On Tuesday, her blood came back neutropenic. It's seemed like she's been screaming ever since. Very, very pale. Sweaty and agitated, but no fever. Snot everywhere, then uncontrollable coughing. Sleeping back in Mama's bed. "I gonna throw up" on Friday night. Vomiting into the kitchen sink...again...while Brian holds her chin and I hold her hair back, whispering quietly to her that all will be okay. While the neighbors next door eat their dinner through their kitchen picture window and watch our daughter vomit through ours. Again.
I could see today it in Brian's countenance. In the way that he picked a fight with me when I suggested that he go take a shower. In the way his shoulders slumped and he stared at the floor while Aila screamed that she wanted to "lay on the couch" at 2:30am after spending twenty minutes furiously organizing toy cars and stuffed animals on tables near her. Out of her mind. Trying to create some order in her own chaos before finally daring to rest her head.
Zander's exhausted too. I saw that tonight as he put himself to bed. Cartoons were still on the television, but his sister had been borderline psychotic for a while, yelling at invisible people to "get off me." He simply grabbed a binky and his milk and walked toward his room. When I went to tuck him a few moments later, he was negotiating on his own which blanket he would use for the night. Ah, Z, your first day of first grade is Monday. First grade! And we are once again focused entirely on your sister. Your father and I have so much sadness.
And sweet Aila. She's so tired. Maybe a little pissed off? So worn out from all the insult to her little body. Again and again and again. Today, I could see how little control she feels. She demanded to come with me to pick up sushi. We had given her ativan to calm her internal chaos, as she'd spent most of the day screaming in pain. She and I parked about four hundred feet from the sushi restaurant, and she stumbled as I held her hand while we walked to the restaurant. Slurring her words. No screaming or tears or yelling, so the pain was at bay with any luck. But I could see her frustration with her little legs as she stumbled along. Insisting in those moments to let go of my hand and go it alone. As though to prove that she was indeed strong and independent. I chuckle to myself when I think that at four years old she of course can't see what we see. Incredible, unbelievable strength.
The end of chemotherapy is nigh, we're told. (As long as she doesn't relapse, please god no relapse.) By Halloween, our baby will have taken her last dose. Sometime in late October, we'll close this chapter and move on to the next, whatever that brings. I'm not going to try to explain my fear or terror of the end in this post. But suffice it to say that I am as afraid for the end of chemotherapy as I was for its beginning.
We love you with all of our being, Aila Muriel.
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vk 7 years, 2 months ago
I love each and every one of you. Including all the toys Aila lined up next to the couch.
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