Dec. 2, 2015, 1:47 a.m.
Today, Aila and I first went to the "walking doctor," which is her excellent physical therapist, Katie. This was our fifth week, and progress is slow. Aila very much wants to learn how to walk again, but she feels tentative and worried when now she puts any weight on her left foot. She likes her walking doctor, who plays many games with her. After we were done, we ate a tangerine together and then drove to San Francisco, picking Brian up at Pinterest before heading to UCSF. We got lunch in the cafeteria for Aila, and then Mom left for a quick 3-mile run around Mission Bay. Brian headed back to work upon my return, and Aila and I headed up to our clinic visit. We arrived at 1:30pm but didn't leave to drive home until after 6pm.
Probably the scariest thing that happened today was when we were first escorted into the vitals room. During the three months following her diagnosis, Aila routinely became agitated and angry when nurses or doctors attempted to take her blood pressure or pulse. Today, when asked about blood pressure, she smiled and extended her arm, then decided which toe that she wanted the pulse strip wrapped around. I felt crestfallen when I saw Aila do this, so readily and voluntarily, realizing that we were fully amidst a "new normal."
Preparing for and watching Aila receive chemotherapy--a baby we longed for, who Brian and I created, and for whom I labored--it's an experience unlike any other in my life. At first, to be honest, I felt a little sick to my stomach thinking about what they were putting inside of her. Now, I just feel fiercely protective of her as she first receives saline for an hour, then her chemotherapy (today methotrexate and vincristine). If she wants to watch Princess, then we will watch Princess. If she wants a cookie, then we will eat a cookie. If she wants to take a nap, then a nap it is. I don't care if anyone likes me during our time in the clinic, although it's hard not to like our beautiful girl. Today, I had a frustrating and silly fight with multiple nurses about whether to apply the lidocaine cream to her port before accessing it for her infusion. Aila hates the lidocaine cream and its accompanying adhesive, so Brian and I have decided that it's unnecessary and simply prolongs the access to the port. However, the nurses today were entirely uncomfortable accessing a 2-year-old's port without lidocaine on board. I said "no" for about 5 minutes, to two nurses, before it became clear to me that this was more or less part of their protocol, and that they had no real intention of doing the infusion without it. So I acquiesced, but I still feel that I shouldn't have been put in that position. I know my daughter, and she doesn't need or want it.
They gave Aila a special toy on the way out, and all I could think was, "oh man, Zander is going to be so upset." When we got home, he was. And I felt like it was unfair as well, that just because his sister has cancer, she gets a fun pack of crayons and balloons and new toys. He was already destryoying parts of the house, so I swooped him up into the car, and he and I went to Target and Whole Foods. We got him a little present, and he helped me shop for dinner. I remember the Child Life Specialist at Stanford saying that siblings often struggle with the lavishness heaped on the patient, and today I finally understood.
We're all so scared, overwhelmed, and tired that Brian and I fought tonight. I honestly don't even know what we were fighting about, and I doubt he does either. I think of most of these fights, these days, as "how could the universe do this to us?" fights, with no real content or therefore resolution. For me at leaat, I decided sometime in the last four months that it was pretty great luck that for an instant I joined a cycling team (GS Boulder) and met Brian on a team trip to Utah, when we were both climbing up a hill. He's strong, amazing, and dedicated, and together we are even better and stronger. There is absolutely nothing easy or enjoyable about this, but I believe that we will make it through intact, in one piece, and even okay.
One day, Aila, all you will remember is your war-torn parents telling you about your fight. But keep it up, okay?
We love you, sweet girl.
Mama
Comments
vk 9 years ago
Wow. New normal, indeed. Aila is so cool. So brave. Good job, sweetie. Hugs to all the Cosgroverstreets. Thank you for the blog update.
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