Feb. 22, 2016, 11:28 p.m.
Well, it happened. Brian and I had an unsavory, unflattering, extremely loud, knock-down drag-out fight last night...in Aila's hospital room. It happened a time or two when we were inpatient at Stanford for a month, but at Stanford the nurse never came into the room, asking a little too politely, "Is everything okay?" Of course, the simple answer is "no, nurse, not at all." But I didn't get the feeling that she wanted much more than agreement that we fight quietly if we were insisting on staying the course. Truth was, I mainly just felt shame that we were fighting at all, which feels weird to write since when I think about it, I am often impressed that we're not fighting more often than we currently are. A lot of things aren't going quite as planned, after all. When that nurse came in to our tiny hospital room, we had been living with Aila there for ten nights and eleven days. It was Sunday night, and I'd been at the hospital since Friday. Brian had the boys on his own all weekend and had just now brought them up to Benioff so that the three kids could share their first visit in a week. I was stir crazy, exhausted from sleeping in a twin hospital bed, and frustrated that Brian was running later than he had promised (I mean, it's SO EASY to get two tiny brothers fed and bathed while simultaneously packing for multiple nights in the hospital...I can't imagine how he got held up). Brian was frustrated that I was exasperated. The kids were all yelling, there was Play Doh and crayons all over the floor, and I thought I was going to lose my mind. Literally and truly, I thought that my mind would just fly out of my head, like a chicken out of a coop. It was not my finest hour, and I felt shame when that nurse witnessed our agony.
Tonight's our twelfth night, and tomorrow's our thirteenth day. Aila's symptoms are long gone, and now we're waiting for her counts to come up. Her red blood and platelets are phenomenal, and even her lymphocytes have rebounded. But those damn neutrophils are slow to catch on to their colleagues' movement and have mostly flatlined for over a week now. The nurses pull blood from her central line each morning at about 4am, and I have sometimes checked MyChart.org two or three times by 6am to look for the ANC (absolute neutrophil count) that seals our fate for that day and beyond. This morning, it climbed to 110 from 60 yesterday. Horrific numbers if we think about her actual immunity, but an upward trend! Persistent upward trends mean homeward bound. Sweet, sweet home.
When Andy and Meghan visited over the weekend, I found myself showing them around as though I live here. Here's the family lounge, and we put our food labeled with Aila's name in the bottom left hand drawer. Help yourself to a soda. We're on the "regular" Hem/Onc unit, but across the hall there is the Blood and Marrow Transplant Unit. The cart for old meal trays is across from the nursing station, right here. I honestly have no idea whether other hospital units are this way, but because of the immunocompromised nature of many, many pediatric oncology patients, we live in our room with a door that opens only ever briefly to let in staff. Because of her virus and her neutropenia, Aila's on "droplet isolation" this time as well, so everyone who comes in must wear a mask with a plastic front that protrudes upward to cover their nose. I remember when she was first diagnosed, I had these fantasies of parental support groups in the family lounge, where we shared our stories and our horror, maybe laughed at some silly nurse or some funny child. I can honestly say that in all 50+ nights in the hospital, we haven't met even one family...because everyone is behind their own closed doors, shielding their own immunocompromised child and participating in their own fracas or melee, possibly with greater reserve than I.
I've found my brain thinking about relapse and its possibility for the first time since her diagnosis. I'm not entirely sure why these thoughts are sneaking in now, although I suppose it could be because her counts were as low in recent weeks as they were at diagnosis. I also randomly found and joined a private Facebook group, Momcology, and have read some about relapsed children. It also could be because I spend a lot of time with my daughter during these hospitalizations, without the clamor of her wild brothers or the competition of housework. It is so easy to embrace her tenderness and marvel at her crazy humor, which in turn reminds me how much we love her, cherish her, and cannot imagine a life without her in it.
I let her eat four Reeses Peanut Butter Cups right before bed. It felt amazing. We might have more for breakfast.
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