Ana came home from the hospital at about 3:30 yesterday. She felt a little ill, but was able to eat and move around fairly normally. She said she felt odd and spacey, and had to sit and rest frequently. Her mouth didn’t bother her like last time. We have a big bottle of Magic Mouthwash (a solution that includes stuff to numb her mouth) on hand in case it starts to hurt (the chemo can cause mouth sores and pain). The last thing we want is for her to have difficulty eating again.
Today she seemed okay, except a bit emotional – but maybe that’s just because I’m a bit emotional and we’ve been sort of feeding off of each other in that regard. She ate three meals (including two slices of pizza for dinner) and snacked in between. Her weight is about 68 pounds – up six pounds from her low of 62. I had to cut her hair again. It’s about up to her chin and it’s very thin on top. The stylist is coming tomorrow at 4 with her wig (I’m very happy he was able to get here so quickly). Even with the wig on its way, Ana is still very upset and self-conscious about her continuing hair loss. Each day more hair comes out, more of her scalp shows and she says she’s ugly.
You can tell an 11-year-old girl she’s beautiful a million times, but it doesn’t mean shit if they look in the mirror and hate their hair.
So…today was okay. I took Ana to Adam’s for a salad (she loves the salad bar there). I made the salad myself so she wouldn’t have to touch anything. We went there on Monday too and I snapped this photo of her:
All of the bloodwork that Ana got on Tuesday came back good – meaning she is allowed to go out without a mask as long as it’s not during peak hours (e.g. no Friday 7 p.m. movies). Her liver tests were all good too. Also, she was approved for the triphasic CT scan at Sloan Kettering. She will have that the first week of November and then we’ll know if she needs more chemo or if the surgeon thinks he can operate on her liver and hopefully resect the tumor.
I spoke with Carrie Jones Ross, a reporter from the Kingston Times today. She’s going to publish a story about Ana at some point in the next couple of weeks. She asked me a lot of questions, but the one I keep thinking about is about my family’s luck (or lack thereof). We have two children and both of them have been struck with serious medical conditions. Carrie wanted to know what I thought about this – was the universe against me?
I wish I could’ve been profound and introspective when I answered that question. Instead I said something about how we don’t question too much, we have to be strong for Ana and it doesn’t really do any good to shake my fist at the sky and ask “why?” Even though I do that at least once a week. But I was talking to Ana about this question and THAT’s when I came up with my profound answer. I said, “You know, Ana, bad things happen more often than people realize or want to admit. For you, that means cancer. For someone else, it could be a heart attack, or a car accident or multiple sclerosis. The odds are against all of us – and I totally don’t mean that to sound as negative as it does.” Ana got it. So many people have come forward with their own health horror stories and she realizes, at such a young age, that life isn’t always easy. Or fair.