March 31, 2016, 2:22 a.m.
My father took her for a routine, pre-chemotherapy blood draw on Tuesday afternoon, and we had no reason to expect any surprises. But her ANC was a wobbly and precarious 500...neutropenia again. We were surprised, and I think UCSF was as well. But everyone's different in their response to chemotherapy, and my sweet little girl had to go back for another draw yesterday. This time, her ANC was 700. Still dangerously low for immunity's sake, but high enough that chemo would continue. Later today, Brian will take her to Benioff for first a spinal tap, again under general anesthesia, where she will receive methotrexate. After, they'll head to the infusion clinic for infusions of vincristine and more methotrexate. Luckily, they'll access her port while she's under, and her fright can be avoided.
I have to admit that I sometimes feel guilty writing these posts. I feel like I'm writing the same thing over and over again. Complaining, even. Whoa is me, us, Aila...shouldn't we have gotten used to this by now, after all? Stronger parents (families, mothers, etc.) would have gotten used it, say the automatic thoughts in my head. After all, should be easily able to place the unhelpful, negative emotions on a leaf, lay them in a stream, and watch them float away. As though there is some "right" way to shepherd your 3-year-old through multi-year chemotherapy. Some easy way to only realize and experience the eventual good things, centered on living in the now.
If there is, I do not know it. Aila and Brian leave in seven hours, and all I know is that the familiar sense of dread has settled in my heart. I cannot sleep. Who can sleep, after all? Welcome back, dread! Poison into her sweet, sweet body. General anesthesia, spinal tap, awakening from the anesthesia in a fog. Infusion, diarrhea, confusion. Convening at home later in the night, all five of us, pretending "normal," when nothing is. Yet some things are, maybe...the baby dancing around the house to the A-B-C song and Zan watching Go-bots? Aila....throwing up? Okay? Exhausted? Wired? Sleeplessness is again likely.
I ABSOLUTELY do not want anyone to feel sorry for us. This is life, sometimes. And sometimes life is also amazingness. Even amidst this, we know and see it every day. How could we not with three kids under five living under our roof? But I do want to try to document an honest account of this horror show, with hope that some future mother or father of a child with cancer, questioning his or her own sanity and fortitude, might realize that a myriad of emotions--desperation, hope, despair, and terror, among the spate--is par for the course. And that sometimes these emotions may sit like a dead weight on your soul and leave you feeling paralyzed. No matter how hard you try, they simply will not get on that leaf and float down the stream. They're here to stay, at least for right now...and this may be distinctly at odds with what makes the surrounding world, which seems ready to "wrap up" Aila's leukemia and move forward and beyond, feel comfortable and good. It's tiring to think about pediatric cancer--the relentless suffering of a baby--over and over, again and again, with no end in sight, after all. I understand.
Sleep well, sweet baby Ais. --Mama
Comments
Angela Tana 8 years, 8 months ago
Vicky I'm still listening. You do whatever you have to do to get through this time. Please try not to ever feel guilty for anything. Keep writing. Aila is a beautiful girl. I'm thinking of her often and I try to imagine her a few years from now when hopefully she'll never have to go through this torture again. XOXO
Link | Replyvk 8 years, 8 months ago
Definitely not feeling sorry for you - more like marveling at Aila's wonderfulness and your willingness to be transparent about the relentless process of beating back cancer. If anything I'm experiencing gratitude for you. So much poking & prodding, so many hugs to balance it all, I'm cheering very hard for baby Ais.
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