Nov. 18, 2015, 1:43 a.m.
I've realized that this blog is really about my emotional experience of Aila's cancer. I often seek and read other blogs of parents of kids with cancer, and I sometimes marvel at their agility at focusing on only facts and routine. (And then, I wonder why I think that's better.) If and when Aila chooses to read her mother's ramblings when she is older, she will really be faced with an expose of her mother's emotional life and her mother's perception of her family's emotional life. If she wants to understand what treatments she received, she'll have to read another blog!
Happy 1st birthday, Decy (Decky? Deci? Decee?). I call him Decy all the time, but I have never actually written it. A year ago, I was sitting on our bed, trying to write a Final Exam, and realizing that all I could think about was my pain. We drove to Stanford the next morning at about 9am and parked in the same parking lot I park for work, about 1/4 mile from the hospital. I screamed at the top of my lungs during the entire walk to labor and delivery and the entire time until I got an epidural, and he was born on the afternoon of the 18th. He spent the first four or five months of his life screaming all night with collick (whatever that is, besides screaming all night) before enjoying three or four months of normal (what is that?) before his sister got sick in August, when he was 8 1/2 months old. As a family (and I'm not proud of this), we've spent the time since August coming up with clever ways to either silence or occupy him. During the nights when Zander and I are alone with him (when Brian and Aila are in the hospital), we even have a funny catchphrase that we share as Zander gets ready for bed...."we need to get rid of that baby," says Zander as we both laugh. When Declan was screaming for months on end, I used to say that I had no idea who he was or what he was like. Now, I know he's a giant baby (26 pounds!) who loves to eat anything and everything, who is a sweet, gentle creature who is scared by loud noises and strange voices. Who jumps on his knees in joy when Mama or Daddy gets home. Declan, if you're reading this someday as an angsty teenager or a grown adult, know that I feel great sadness realizing that I couldn't have been more for you during this first year. As the third, the cards were always stacked against you, but we didn't plan for this.
Aila had her third physical therapy appointment today. And this past Sunday, she took her first solo steps since she got sick on August 7th. They were tentative but bold and brave at the same time, and truthfully I thought I would be more excited. I suppose it happened gradually, and even in the past two days it comes and goes, it being her desire and willingness to try. So in some ways, it feels like it might not be real. My single goal has been to get her on her feet and build her strength before she begins Delayed Intensification, which threatens in 27 days on December 15th. For 56 days beginning on December 15th, I think that things are going to (hopefully) temporarily fall apart again for a bit, with blood counts plummeting, possible fevers, very regular chemo infusions with new drugs, and likely hospitalizations. Aila also takes dexamethasone again, which is s steroid, which she took during induction, that makes her hungry and insane. As each day goes by and December approaches, I feel a new kind of fear with which i am not familiar. It is a fear of the known, the holler and cry of my baby in pain, which is at once devastating and tragic, and if I'm not careful, paralyzing.
But, I think what we've learned, through Induction (the first month and phase of her chemo, when we were in the hospital for a month), Consolidation (the next 28 days), and now Interim Maintenance I, is that the hardest is when the chemo has time to accumulate in her tiny body and she simply has nothing left with which to fight. Right now, the chemo is not too intense, and she's fighting. Fighting with Mom, fighting with Dad, fighting with Zander, fighting with her baby brother, and fighting with the universe for what it has handed her. Good, my Aila, keep it up, because I truly believe that with each fight you get stronger and healthier, however intolerable hearing you scream and demand and emphatically refuse is. During Delayed Intensification, I think we're going to have to fight for her again, while she out of necessity retreats into a steroid- and chemotherapy-induced dissociative fog. I know we'll find our strength, but right now I don't quite understand how.
You are amazing, Aila, and you are fighting!
With unfathomable amounts of love, Mom
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