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.
When Brian and I learned of her blood results yesterday, we both later shared with one another an acute sense of defeat and hopelessness. A feeling that this horror will really never end. In some ways, we were protected from this hopelessness during the first month or more because of our shock. The entire goal at that point was to protect our baby with radical force. A crisis? We can respond to a crisis. But when the crisis carries on and on and on, then perspective shifts. And apparently hopelessness ensues. I felt defeated because we couldn't keep moving through the leukemia ultramarathon. Day 30 of Delayed Intensification means that we're that much closer to Day 1 of Interim Maintenance II, Day 56 of Interim Maintenance II, and Day 1 of 86 of many, many cycles of Maintenance. Instead, we pause. They call it a "break." Sure, yeah, a break. Maybe we'll head to the shore. Or a quick trip to Great Adventure or the San Francisco Zoo with the kids? Oh wait, Aila is at risk right now as soon as she is in contact with pretty much anything or anyone. My father took her to Target this week, and we grilled him about his use of hand sanitizer and wiping down the cart before putting her in it.
For the past two (delays of Delayed Intensification) weeks, Aila has spent days with my Dad in his apartment. The first week, she was on dexamethasone and a zombie, so he carried on with his business while she slept. This week, she was a bit more active, wanting to try walking around his apartment and watch his "Pad," all the while demanding soup and pasta. Maybe (probably) someday down the road he'll complain about the toll this took on him, but right now I'm pretty impressed with my Dad. During these weeks, Brian and I try to work as much as humanly possible with the hope of banking time for when she tanks, which we know will happen soon.
We've become obsessed with cleanliness. We were always pretty clean, to be honest. But now, we are obsessed. We have a sign on our front door that says, "Welcome to our home, Upon entering, remove your shoes and immediately wash your hands." It's been there since August, and I feel great about it. I still hate hand sanitizer (it's so slippery and gross), but we have it in every room. We have this whole system so in place that Zander gets mad at me if I do not immediately help him wash his hands when he comes in the front door. Right now, with her neutropenia, she's more or less quarantined. If she were older and at school, we might rethink this decision. But for the time being, it's okay and she doesn't seem to notice. I do, of course, realizing on a daily basis what she's missing. No visits with friends at the park or music classes or gymnastics, like Zander had at her age. I'm sorry, baby, I hope you forgive me one day for all my decisions which you decide to disagree with when you are old enough to disagree.
I went and got my own hair cut (shorter, so it does not take as much of my time to care for) and colored today. I'm not a woman who is very preoccupied with her physical appearance, but I did this only once in 2015. Even for me, this was an all-time low. During the visit today, I just felt so overwhelmingly and perhaps irrationally guilty. Who am I to have hair let alone get it cut and colored? And more, when will my baby experience a visit like this? With this latest steamrolling of chemotherapy, she is almost the bald cancer kid on the St. Jude's commercial. She continues to want "blue hair," even today pointing to "Joy" from Inside Out and saying that that was "my blue hair." It's my sorrow, the hair loss, I know that. But it's real sorrow.
I think that this week, with another surpise delay, Brian and I have both questioned our own abilities to subsist, persist, and carry on. It's a nice thing to say, and very comforting for others, to think, well, "you have no choice," but the choice we have is to fall apart as a family. I don't think either of us will abandon Aila (or Zander or Declan), ever, but sometimes I (and I know Brian does too) feel like running for the hills. We like to think that we're "strong," "fighters," but the truth is that we are just like every other familial group of humans who has somehow shockingly faced pediatric cancer or another peristent, scary, powerful, and relentless trauma.
You are enduring, fighting, my sweet Aila Muriel...nearly six months in, I don't even know what the proper closing might be. Maybe what I should have been telling you from the beginning is to yell? From the minute you were born, you were our sweet, calm baby girl who almost slept through the night, cooing and cawing in peace. You are yelling now, and maybe that's just right. This is a horror show, so yell, but I promise you that there will be moments of peace in your future. I was thinking today, during my haircut, about to-date ways that this has changed me. Right now, I don't care whether you become a truck driver, a dentist, a server in a restaurant, a construction worker, a lawyer, or really pretty much anything else that doesn't land you in jail. I'm just glad that you are alive.
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