Ana had a great day today. It’s amazing how fast she’s showing improvement compared with last week It’s like a healing snowball. She spent a lot of time calling into school today via Facetime on her iPad. I could hear her participating in class and laughing with her friends as she worked on a project which was the best background noise EVER (my office is right next to her bedroom).
When I tell people that Ana uses her iPad to join her classmates at school, the response is usually something like, “Wow, we have such amazing technology these days.” And while I don’t disagree that the technology is amazing which helps facilitate Ana’s participation in school during the day, I do want to say that this couldn’t happen without the incredible support of Patrick, Ana’s teacher, Elena, also Ana’s teacher, Ally, also Ana’s teacher and the many brilliant 6th graders in Ana’s class, particularly Sophia, Ana’s good friend, who make sure that Ana is not only connected, but literally carry her around (via iPad) where she needs to be (e.g., in a small group to work on a project). It is absolutely miraculous to witness this. She’s actually IN school – without being IN school. If only the iPad existed when Bubble Boy was alive. I think he’d at least have had some socialization. My thanks also extend to the school’s administrators – namely Michelle and AnnMarie for facilitating this kind of collaboration between Ana, her teachers, the students and other staff (e.g., Ike) who helps with technical stuff. I’m sorry if I forgot someone – thanks to ALL who are making this possible.
Did I mention how amazing it is that she’s going to school from her bedroom??
So, back to her health. She was down another two pounds today which means she’s 62 pounds – lower than her lowest weight even while at Westchester and undergoing chemo. To say she looks thin is an understatement. The good news it’s likely all fluid because her stomach looks less bloated every day. The bad news is…egads she is so thin! I think she’s only a couple of pounds less than Emily now (Emily is 8 – Ana is 11). So I emailed Dr. Martinez to see if there was anything I could do to put some meat on Ana’s bones and she said I could ease up on the sodium restriction, but still watch her fluid. So, Ana had a bunch of cheese tonight (we are still counting sodium milligrams) and I also got her medium French fries from McDonald’s (270 mg of sodium – which actually isn’t bad).
I took Ana to Target and we walked around for a good 30 minutes or so and she was fine. She got two nail polishes (Storey, she wants to do your nails), a wallet to hold her iPod and some candy. She kept up with me no problem. When Emily got home from Karate, Ana played two games with us (turns out she just LOVES the game Clue).
Oh, and one other thing – yesterday she discovered a trove of my old books and today she spent a good amount of time digging through them. It was everything from the complete works of Shakespeare to a book about dinosaurs (I took a class on dinosaurs in college) as well as stuff I’d forgotten I’d ever read – like Grimm’s Fairy Tales (she’s reading that now and is just as delightfully horrified as I was when I read it). She found some old pressed flowers that I don’t remember pressing. They had to be like 20 years old (all I could think was “MOLD! FUNGUS! STAY AWAY!)
That photo is all that remains of that flower, by the way. So I’m sharing these moments because they are good, and happy, and hopeful and you deserve that after all of the heartache and stress I’ve pulled you into. This is the good stuff. I love that Ana now has a stack of books she wants to read that I’ve read, and loved and reread. And I love that she values my opinion about books! She also just discovered the library and she loves it. She has her own library card and is about to start reading E.T. The Extraterrestrial which is a book based on the manuscript of the movie! I read that and can’t remember if it sucks or not. I just remember how the alien was ancient and lost and I felt really bad for him and when I described that memory to Ana she just HAD To read it.
Ana found that pressed flower in the Shakespeare book, by the way. I caught her flipping through that book and – in my finest moment of the day – I thought, “Is my 11-year-old actually reading Hamlet?” It turns out she was reading the notes I wrote in the margin 18 years ago when I took Shakespeare in college.