Dec. 22, 2016, 10:47 p.m.
I'll be the first to admit that we'd perhaps gotten a bit jaded during Aila's Maintenance treatment. After the scourge of the first nine or ten months (dubbed "frontline" treatment in ALL lingo), we had settled into the routine of daily oral 6-mercaptopurine, weekend sulfa, weekly oral methotrexate, monthly bursts of dexamethasone, and intermittent infusions and spinal taps for vincristine and methotrexate, respectively. Her counts had been mainly "good" during recent months, which of course in chemotherapy land means just above the threshold for allowing (for example) a cozy home for the bacteria from the washing machine to live in your blood (which is what happened for Aila right before she was diagnosed). Anyway....we thought to ourselves, "hey, we've got this under control," "this sucks, but we can muddle through this for the next year or so until the end, especially now that we know how this goes."
If I'm honest, she'd been pretty sick for more than a week, with low-grade fevers, chills, and exhaustion arriving in bursts, before the fever almost reached 102 on Saturday night. I only checked it on a whim as I was putting the two tinier folks to bed while Brian headed to grocery store. She looked peaked and sallow, and I grabbed for our "first-pass" head thermometer from her medicine cabinet. I texted Brian a photo of it's 101.3 reading while I reached for the confirmation thermometer, when we check under the arm. It didn't stop climbing until 101.8. I let her fall asleep and rejoined Zander in the living room, where we had been decorating the tree with the last of the ornaments from a box that had just today been unearthed from the garage. Within an hour, our bags were packed, and she and I were headed to the ER at UCSF Benioff Children's Hospital.
They accessed her port, drew her blood, and administered the predictable dose of antibiotic per their protocol. Every doctor and nurse assured us that post-antibiotic we'd be on our way home, since her white count was certainly strong. But I could tell from the look on the nurse's face when she came in halfway through the antibiotic infusion, asking whether she could put a pulse-ox strip on Aila's finger, that something wasn't right. Neutropenia. Neutropenia? Neutropenia! (Channeling 2-year-old Declan's monosyllabic style)....no, no, no, no!
We were admitted early Sunday morning around 3am. We hadn't brought any sleepwear or toothbrushes, so sure we were going home. This time last year, we had our hospital bag packed and ready to go at all times. Jaded. Silly. No one controls cancer or cancer treatment. The nurse who was checking us into the room called Aila a boy, and I corrected her. Then five minutes later when she was almost done with her check-in, she said how "sweet he looks," again referring to Aila. I corrected her again, this time very curtly, feeling like openly weeping. It's a pediatric oncology unit! Most kids (a) have no hair, or (b) once had no hair and are in various stages of regrowth. Also, lady, you're STARING AT HER MEDICAL CHART WHERE IT SAYS HER GENDER! Okay, okay, it was 3am, and I was perhaps not at my best. But short hair doesn't mean a resignation of one's role as a female. And...it's a pediatric oncology unit!
Her ANC (Absolute Neutrophil Count, the number we live and die by during ALL treatment) was dangerously low at the start of the hospitalization and dropped lower the next day and the next. Her bacterial cultures weren't growing anything, but her Influenza B test came back positive on Day 3, at least explaining the cough and cold symptoms. Amidst declining counts, all I could think about was relapse. When I asked the doctor, he said that although unlikely, there was of course no way to know unless the counts didn't come up for a couple weeks, that with ALL patients, "it was always on the table." Unlikely, but undeniably present. We just needed to wait for her to recover from the flu, for blood cells to regenerate and begin to proliferate in her marrow and beyond. For immunity to build. So stupidly jaded, we were, as those cells don't share their daily activity plans with us, not when she was diagnosed and certainly not now. No way, no how. Aila has no control, and her parents certainly can claim none. The last time we had to wait, it took 15 days. Maybe we'd ring in 2017 from Room 3 on the Ped Hem/Onc Unit.
Our family started the "Aila's in the hospital" dance. We had muscle memory for it, which made it a bit easier, I suppose. Brian packed our hospital bag with clothes and supplies before he relieved me late Sunday. Zander resumed his spot in our bed, sleeping on the pillow of whichever parent was gone. Declan is now older, so he also needed cuddling and comforting before agreeing to sleep in his crib, alone in a room where his brother and sister are usually sleeping beside him. Aila succumbed to her fate, as she has so easily done since the beginning of this wretched journey. She let them x-ray her chest (again), and then watched How the Grinch Stole Christmas, Inside Out, Frozen, and The Little Mermaid in an endless loop on her personal big screen tv. She fought the nurses and doctors only (in my opinion) when it was appropriate, acquiescing a majority of the time for poking, prodding, and procedures. We ate a lot of cheesy eggs.
On Day 4, Dr. Goldsby (Santa?) began talking about something called granulolyte colony-stimulating factor (G-CSF) as something that may help stimulate her marrow and get us out of the hospital before Christmas. Since she tested positive for Influenza B, everyone seemed calmed that there was a cause for her neutropenic fever. In contrast to last Christmas, when we were also hospitalized but there was no discernible cause for her fever, everyone seemed hopeful that we might be able to go home. I was skeptical. Why hadn't we heard about this magic potion before? Neupogen, filgastrim...I knew I'd seen ads on television but had assumed that these weren't for kids. She got her first and only dose on Tuesday, when her ANC was .16, the lowest it's been since her Delayed Intensification phase last February. When we woke up on Wednesday morning, it was well over 1.0, a safe enough range. Dr. Santa told us that it was something of an illusion, kind of a jumpstart to the stem cell engine. That when the dose wore off, things would return to homeostasis, which woud probably be neutropenia for at least a day or two. But the jumpstart would make it safe enough for us to return home, where her cells would be free to begin their upward climb amidst opening her presents on Christmas morning with her brothers by her side.
I feel deep gratitude for Dr. Goldsby's decision to give Aila G-CSF this Christmas. And while scary and painful, I feel equally grateful for the unanticipated hospitalization, believe it or not (although God help me if we have to go back anytime soon). It is an incredible reminder that she is profoundly vulnerable. We are profoundly vulnerable, and when I am aware of it, I somehow have access to a type of clarity...about what's truly important...about what has very little meaning if not any at all, both here in the hospital and in our daily lives.
Later, when we were packing up, I heard cheering in the hallway and peaked out the door. A little boy, not much older than Aila, was being discharged after a long, long stay. The nurses and doctors were cheering for him and wishing him well. He began crying, and (from a distance), so did I. I thought about what he and his family had probably seen and endured, about the parts they may desperately wish to unsee, about the moxie they were forced to sharpen in order to wake up every morning and carry on.
"He who learns must suffer. And even in our sleep pain that cannot forget falls drop by drop upon the heart, and in our own despair, against our will, comes wisdom to us by the awful grace of God." --Aeschylus
Merry Christmas...
Comments
vk 7 years, 10 months ago
Wow. "...about the moxie they were forced to sharpen in order to wake up every morning and carry on." I don't think I know what that feels like as you do. And you have certainly developed a fluency in medical nomenclature. I hate the division of abnormal cells with every cell of my body. Fight on, Cosgroverstreets.
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