Feb. 6, 2016, 2:37 a.m.
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.
It's hard not to think about the time that we've lost and are still losing, that we'll never get back. Tonight, Brian and I agreed that we'll remember these early years of their lives in terms of chemotherapy infusions at UCSF, laxatives and pooping regimens, fevers, and middle-of-the night visits to the ER. Amidst all this, Declan has learned to walk! About a month ago, and imagine that I'm just now getting around to posting this news. At his 12-month pediatrician visit, he confirmed our suspicions that he was a big guy, "scoring" in the 99th percentile for weight. When he walks, he throws his arms in front of his body for counterbalance and fearlessly plods forward. He is walking earlier (by almost three months) than did Aila or Zander. We hardly have time to pay attention, although he seems to have an independent, linebacker spirit (are linebacker's independent?) in his soul (thank goodness). Hopefully he'll understand and forgive us one day.
Eight infusions and one spinal tap since January 25th. Her father took her to four, and I took her to four. For what it's worth (for all the cancer parents to whom I eventually market this blog), her little body seems okay with cytarabine. No real fevers, okay bowel movements, and more-or-less okay spirits (not great, by any means, but we haven't seen that since last August). The days she had the most trouble were the days that she had a dual cytarabine-cyclophosphamide infusion and intrathecal methotrexate (via spinal tap). Those were the days she vomited uncontrollably and ended up in the ER.
So where does this leave us? Well, now we wait. Her blood cells (red, white, and platelets) will soon hit their nadir next week. She may need transfusions of red blood or platelets, which she had many times during the first month. If she needs these next week, we will have to take her back to UCSF for 3-4-hour transfusions. She has very little immunity, with her first through eighty-fifth lines of defense at an all-time low. (Conveniently, her two brothers have had fevers and colds during the past week. Great timing, Z and D. Thanks for that.) Sometime in the next few weeks, her blood is expected to rebound, back to levels that provide her little body some protection and strength. It is then that we will begin the next chemotherapy go-round, knocking her back down.
Happy 3rd birthday, Aila Muriel. And Declan, wow! Even if we are relatively inattentive now, we will follow you wherever you go in your life, I promise you that. It's another post (or two or three) entirely, but this experience--from diagnosis on--is changing us, as individuals and as a family. I guess I feel like it's rare to be amidst an experience such as Aila's cancer and its treatment, with such a profound awareness of its monumental import and impact, but with relatively little perspective or knowledge on how this will eventually change our lives. It will, though, I'm very sure.
Rest, fight, endure, tolerate your weary parents' exasperation. We love you, Zander, and Declan fiercely.
Comments
Chris Cosgrove 8 years, 10 months ago
Happy BDay to Aila and great congrats to Declan. Always love to Zander of whom we're so proud. In between the incredibly sad lines were bits of positive words ....that Aila endured one of these horrible chemicals pretty well and so far seems to have prevailed even though her brothers were loaded with germs of the common cold variety. Not to jinx anything or anyone, you guys honestly are doing so well. none of us could ever do it!
Link | ReplyBlessings. See you soon. Hugs. and love. Aunt Chris
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