This week has been a hard one though Ana’s pain and discomfort have eased somewhat. Her need to sleep is increasing, regardless of how much (or little) medication we give her. This is confirmation that her disease is progressing and, in fact, we can see evidence of her tumor growth just by looking at her stomach, which is distended and hard to the touch.
The emotional toll this is taking on Ana is as hard to watch as the physical toll. She’s feeling isolated and depressed. She hates how she looks. She feels like she “should” be doing something – practicing guitar, using her new camera, doing schoolwork, but she’s too tired, too sick, too weak. Each morning after waking up briefly, she goes back to sleep (at my gentle suggestion) and makes me promise to check in on her regularly (don’t let me sleep too long, okay?)
Yesterday she had roughly 25 minutes of wakefulness until about 4:00 when two of her friends came by for an hour. After they left, she slept until 7:30 p.m., ate a tiny bit, and went to sleep for the night (except for about 30 minutes when Emily and I hung out with her in her room).
She has plans to go to a school dance with one of her friends tonight and, though I’m worried, I’m not going to stop her. She managed to get through three hours of rehearsal at Rock Academy last Saturday, went to her guitar lesson on Monday night, visited with friends twice this week and got out of the house for over an hour on Wednesday to get her hair cut. As long as she can still rally, then I can’t do anything other than let her – even though my heart is in my throat whenever she’s not one room away.
I don’t have the right words to express my thanks for all of the support and love you’re showing our family. Although Ana asked for the postcards to stop, I will (selfishly) admit that I love seeing them in the mail each day. We’ve also gotten many generous gifts including two boxes of delicious chocolate covered strawberries (thanks, Liz), lots of gorgeous makeup (thanks Cat and Michael — Ana and Emily were DELIGHTED), sparkly unicorn horns for the entire family (thanks, Abbe), gift cards and cozy sweatshirts for the girls. Ana’s haircut was a gift too (thanks, Denise). Oh, and food – soup, ziti, and more soup. Thank you, all.
I snapped a covert photo of Ana opening one of the gifts she received this week (it’s intentionally blurry for privacy). This was a box full of luxurious Stila makeup that she LOVED. I keep taking photos without her knowing it. I’m trying to memorize everything about her right now.