Aila
Aila turned three this past Monday, February 1st. If I'm entirely honest (which is my goal, as much as I can tolerate it), it was a sad day. Of course, there were some bright moments. It marked the fifth in her 8-infusion marathon of cytarabine, and I wept (privately and quietly, as it was not about me) when the child life specialist had remembered and brought her a huge balloon and an American Girl Doll. Behaviorally speaking, their timing was kind of off, as they gave her this awesome present and then paraded in the needles to access her port (I would have probably suggested doing it the other way around, but then, no one asked me or even knows I'm a psychologist, for that matter). Also, the American Girl Doll is for older kids, I think, so she's not a huge fan of the doll. It's pretty reliable, that good old classical conditioning. But hey, I was still touched by the gesture. And another happy moment was when she later that night opened her present from our great friend and her adopted leukemia mom, H-B, who lives in Colorado. H is a leukemia survivor herself as well as a mother of two babies, an accomplished professional, and a profound endurance athlete. Aila LOVED this present, and Zander helped her play with it all week long.
Last night was a really, really bad night in our house. Aila was inconsolable. She screamed uncontrollably for hours, which led to the baby screaming intermittently for hours, which led to our moving Zander's mattress into our room because he was upset that Declan was screaming. I wore the Bose noise-cancelling headphones from 10pm until 9am (I could still hear everything, trust me!), when I awoke. After three consecutive days of infusions, Aila was sick, exhausted, and nauseous. Through all my pregnancies, I used to say to Brian (in an effort to describe the exhaustion) that I was bone weary. And after three consecutive days of infusions, Brian and I were bone weary, I think. Then today, we finished the fourth infusion and felt a tiny bit of relief, since the next infusion was not scheduled until Monday. I worked all day and was at my Dad's picking up the boys at about 8:30pm when Brian called, saying that she had developed a fever (100.7) a few hours after they had arrived home. She was screaming in the background from a pain "in her butt," she said. She's had a ton of vaginal infections following IV antibiotics, but all has seemed clear right now. Yet something was either hurting or itching or burning.
I never, ever have very much time, but somehow it seems important to write a post right now, before the next blow hits. Per my last post, Delayed Intensification was delayed, for 13 days to be precise. Aila's neutrophil counts climbed to a very low minimum last Thursday, and she was cleared to begin Part 2 of DI. We felt defeated and demoralized last week when she was held back. But I have to say that we felt a similar defeat and demoralization when she was cleared this week. Nothing right now feels right or good.
Aila is neutropenic (her ANC is 150). There's no reason why anyone would know what that word means, since I certainly didn't six months ago. Neutrophils are the most abundant type of immune cells in our bodies, which attack bacteria and other organisms that can invade. As of yesterday, Aila (again) had virtually none. The last time she had such a low number was during the first month when we were in the hospital. Then, neutropenia was initiated by her leukemia and perpetuated by the pseudomonus and, of course, her chemotherapy. Now it's her chemotherapy. Day 29 of DI was January 12th, but at this point, Day 30 will at a minimum begin on January 25th.
Aunt Meghan and Uncle Andy came to visit and help today, and we had a really great day. Andy and I have had our troubles over the years, but I think that maybe we have turned a corner, largely thanks to Meghan's and his reaching out and willingness to commit. Brian and I were incredibly appreciative today for their help, their love, and their company. We split up, with Zander heading to the mall with Andy, Brian taking a solo trail run (yahoo! his first time to himself since August!), and Declan, Aila, and I joining Meghan for the last eight miles of her long run (the babies were in the running stroller!). Then we came back, organized the garage, put the Christmas stuff away, did 5 loads of laundry, and changed all the sheets. Kids were fed, bathed, and ready for bed at a reasonable hour. All three babies smiled and laughed a ton today. Simply, Andy and Meghan were amazing, and we don't know if they realize the enormous gift they gave us today with their help, since we will be able to start this week with an uncommon calmness and peace in our home.