Inevitable darkness

Dec. 28, 2015, 2:43 a.m.

I'd be lying if I said that we haven't had our share of dark days. Perhaps paradoxically, they're not usually amidst critical medical periods, where we're rushing to the ER or arguing for the best inpatient care for our baby girl. For me, the darkness sets in during the calm after the storm. No crisis which necessitates responding, no immediate medical decision to research and vet. Just the humdrum of the day-to-day, which right now is effortful and wearying almost every minute.

I felt really down on Saturday. After a 5-day hospitalization for a fever in the context of projected neutropenia (a very low absolute neutrophil count, or ANC), Aila was released at about 7pm on Christmas Eve. It had been a scary and exhausting week, with recurring fevers, intravenous immunoglobulin (IVIg) infusion, and chemotherapy (vincristine and doxorubicin). We hadn't stayed this many consecutive nights in the hospital since late August, and we were truthfully out of practice. Our packed and ready-to-go hospital bags were filled with clothes for warmer temperatures and missing staples like shampoo and conditioner. And it was nearly Christmas, a holiday that I've loved since I was a child myself. I accused Brian of being "in denial" of our reality during the first night in the hospital, but it was really I who was. On Wednesday evening, after hours of seeing clients and missing my family, I drove Declan and Zander up to the hospital so that we could all be together. While we were there, Aila developed a new fever (they had been subsiding) and the night resident said that we were likely to be there for at least another 2 nights. I kind of lost my "cool," whatever remnants may be left. I know she has no power since she reports to the fellow and the attending, but I nevertheless asked her whether she realized the extreme toll that two additional nights in the hospital takes on a family of five with three small children, especially during Christmas week. The answer is, I doubt that she has any idea at all. And in fairness, none of any of this was or will ever be her fault, but I was triggered by the quickness and perhaps callousness with which she added on another two nights to our hospital sentence.

Her ruling was overturned, and an attending oncologist whom Brian and I like a great deal agreed with some real reluctance to let her leave late on Christmas Eve. He even called on Christmas to see how she was doing, and we were grateful for that call. Anyway, Brian brought Aila home. My father was "Santa," returning to his apartment to wrap the presents that he and I had bought for the kids before delivering them to our house at 3am. Brian and I gave Aila a bath for the first time in six days before managing the worst tantrum, to date, in which I have ever seen Zander engage. We don't even remember what precipitated it, that's how bad it was. He screamed for almost an hour, and if Brian didn't hold his arms down, he either struck himself in the head or threw objects across the house. He's 4 1/2 years old, so maybe we should consider an early diagnosis of oppositional defiant disorder or temper dysregulation disorder. Or maybe he has a sister with cancer, and he hasn't gotten anything that resembles good sleep in five days, and maybe he's confused by the fact that all the attention shifted to his immunocompromised sister the moment she walked through the door.

We made Christmas happen, and there were moments of joy that we will cherish. But it came and went, and we had no help at all this weekend. Our nanny was off for the holidays, and the amazing graduate students who have been helping us with Zander and Declan on the weekends are off on holiday break. Declan developed a sinus infection and was suddenly crying more than usual in his sleep and angry during the day. A regular, normal cold that a regular, normal baby occasionally develops...and all I could think was, doesn't he realize that we don't have time for this?! Aila was inconsolable...yelling, demanding food, hitting Zander, weeping...about 50% of the weekend for reasons that cannot be quantified but can be summarized, we think, by the umbrella complaint, "I wish I didn't have cancer." Zander and Declan split the other 50% with their frustration, exhaustion, and crying. Brian and I didn't cry (wow!), and I haven't asked him yet, but I imagine there were at least twenty times that we each felt like getting in the car and driving far, far away to an it-doesn't-matter-where place. On Sunday, we finally rallied everyone to go on an outing the mall to look for gloves for the kids, since their hands were cold in the California chill when we went to the park on Saturday. Aila is very excited about practicing her walking now, so she wanted to walk everywhere in Nordstrom's. Our family is quite a sight these days, and we were definitely getting some attention even before Aila and Zander had a king-sized fight over choice of gloves and pushing Declan in the stroller, which ended in Zander throwing himself lengthwise onto the floor and Aila screaming at the top of her lungs.

The dark days are hard in part because I am reminded that we lost the lottery. That Aila had a much better chance of being struck by lightning than by cancer.

After last week, we resolved to get our hospital regimen in better order. Brian found a good family-sized hospital bag, and I have been putting together a list of must-haves for long hospital stays. I wrote out our hour-by-hour "Aila care schedule" for the week today, as I have every week since she was initially hospitalized, and we plotted to separate Aila and Zander next weekend with Brian, my father, or me, to minimize the choas. She'll be back on her steroid treatment as of Wednesday, and we are not eager to repeat a trip to Nordstrom's, this time on steroids. She is likely neutropenic now, so she could get a fever and be back in the hospital at any time.

This has been the hardest time of my life to date, which I'm sure doesn't come as a surprise to anyone who is reading. I derive strength (and I'm not sure the order, except that Brian and Aila are first) from within, but also from Brian, Aila, my baby boys, my mother and father, and the absolute kindness of humans who have given us thoughtful gifts, food for our family, their time, warm thoughts, personal stories, and love from near and far. My gratitude is humbling and overpowering and sustains me.

Dec. 28, 2015, 2:43 a.m.

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