Jan. 24, 2017, 11:52 p.m.
Mid-December to mid-January was a long month. Aila was discharged from the hospital a few days before Christmas. And while we were grateful, I think her immune system would have preferred a few more inpatient days. We restarted her nightly chemo, but within a few days she was looking newly peaked and pale. On New Year's Eve around 7pm, she suddenly had a 102 degree fever, and Brian and she were ER-bound once again. Her counts weren't low enough to warrant admission (thank god), and they sent her home to ring in 2017. But two days later, I took her for her regularly scheduled spinal tap and infusion. And when they drew her labs (as they always do), she was again neutropenic. No fever, so they sent us home after her methotrexate and vincristine, with instructions to hold her 6-mercaptopurine one more time. That was Tuesday, January 3rd, and she went to sleep that night "in Mama's bed," resuming her sick baby spot between Brian and me, so we could watch and check and worry. Between Tuesday and Saturday that week, she was awake (without exaggeration) for about eight hours total. She would wake up asking for food or water, then immediately go back to sleep after a few bites. It was impossible not to ruminate about the possibility of relapse, as the exhaustion and pallor were the hallmark symptoms at leukemia's onset so long ago. Our work and our school and our lives were once again abruptly shifted to accommodate illness, and it was hard not to be demoralized at this unfortunate beginning to our new year.
She eventually awoke, sometime later that weekend, with a ferocious cough and a dripping nose but also with some energy to play. We took her to the lab for blood draw after blood draw to track this latest neutrophilic journey. She was cleared to restart chemo at a half-dose about a week ago, and she'll hopefully be given a green light to take her full dose once again when she returns to the clinic for a vincristine infusion again next week.
It was during this latest round of chaos that I was reminded of how different our family's life is from other families with young children. Perhaps it was a combination of feeling the self-imposed burden of creating a "happy holiday season" for our kids, or maybe it was sinking a bit under the weight of chaos's familiarity. But the last month was a hard pill to swallow for for Brian and me, for Zander and Declan, and especially for Aila. It is true that our kids are learning some critical lessons, about love and fragility, flexibility and fear, early on in their lives. During chaos, it's always clear what's important. Zander runs around the house helping us gather things for the hospital bag. Life becomes immediately fluid, with routines around work or school or fun shifting in response to what Aila needs that day. Fear is normal and okay and affects us all at different times and in different ways. Patience with one another is hard to achieve but essential. But even all the positive spin in the universe can't right some of the injustices they had to endure. After all, the scaffolding of our family's life is Aila's cancer and chemotherapy. Whenever we consider going anywhere, we first think about how clean or dirty the Starbucks or grocery store or library is, how many secret germs may be lurking. Not whether or not the kids will have a good time, not first at least. Our kids think all people wash their hands as often as we do. And have hand sanitizer in the cars, on every table, in every bag. The kids have conversations with each other about blood doctors and port doctors and cancer, and it all just seems normal.
My father packed his car and moved back to Boston nearly a week ago. His departure has been sad, confusing, and infuriating all at once. He makes very different choices than I would, but I think I finally understand (at the age of 40), that he is the way he is, that he will not change. We hope that he finds joy.
We also made the difficult and sad decision to pull Aila from preschool. She had missed almost all of November and December because of illness, and it simply didn't make any sense to leave her enrolled. Many people have said to us that eventual success in life is of course not dependent upon preschool enrollment, and I wholeheartedly agree. But that doesn't mean that we still don't sometimes wish things were different for our sweet girl.
I don't mean to paint a bleak picture but rather one that is based in reality. We're fine, we really are. But I do have exceptionally strong reactions to the late-night St. Jude's commercials showing smiling and resilient bald kids. Sure, they're just looking for donations. And people should donate, but not because the kids are bald and smiling and resilient (which they are). But rather because a lot of the time those same kids are crying or sick or bored, and their families are scared, exhausted, and overwhelmed. Modern medicine is so wildly focused on the cure, the endpoint... that the journey is often overlooked. Somehow those ads do a woefully terrible job communicating the struggle, which is currently and frequently very long and very real where pediatric cancer is concerned. We are grateful for her treatment. But the journey and the struggle are what shape us, what have changed us forever, what we will remember.
Comments
vk 7 years, 10 months ago
You write so well. Thanks for this blog. And for your unflagging transparency. Your fine. I know. But it sucks. I hope for a different flavor of fine for your soon.
Link | Replylkc 7 years, 10 months ago
Your blog is so very important to share with other families entering the world of cancer. Fight, Aila, fight!
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