We got the official word from Columbia today that Ana has been listed for transplant. This doesn’t necessarily mean we’ll immediately get a call to rush her to surgery. It all depends on her PELD score, as I mentioned in yesterday’s post, and I have no idea what that is, plus it doesn’t really apply to Ana because her liver function is good. It’s just she has a big tumor on her liver and the doctors have to convince the folks at UNOS that Ana can’t go on living with this thing growing inside her.
I’m not feeling happy about this. I know I should be, but I’m just really scared. Jim’s taking Ana to the infusion center at Westchester tomorrow so the on call Oncologist can look at the rash near her port. I’m worried that they’ll admit her. I’m worried they won’t admit her. Her hemoglobin is low (7.7) which means she’s pretty anemic and she may need a blood transfusion (the P.A. at Columbia told me this today). She’s tired. She fell asleep at 7:40 tonight and I needed to wake her up to take her medicine.
I don’t want her to be sick anymore. I don’t want her to be too exhausted to stay up and watch SpongeBob with us. I don’t want her to be admitted to the hospital. I hate the hospital. I wish I could stop worrying and take things day to day, like I did with Emily when she was pre-op and we were taping her face weekly (to mold her nose and gums prior to surgery). I can’t seem to find that place of calm acceptance. I’m either looking forward to an uncertain future, fearing the loss of the life I’d hoped for Ana, or looking backwards at Ana’s life before she got sick. And this is a precarious place to be because it’s completely ungrounded. I can’t find my footing. I’m falling. Again.
So, she’s listed and that’s where we’re at. Jim will drive her out to Westchester tomorrow where she’ll either be admitted or she won’t. If she’s not, then the plan is for her to go back to Westchester on Monday to be admitted so she can have the Broviac removed next week. Dr. Hochberg was able to track down the surgeon who placed the Broviac and get him to sort of commit to removing it next week. Apparently it’s much quicker to get this kind of procedure done quickly as an inpatient than to schedule it as an outpatient, which is why she’ll be admitted next week. I don’t like the fact that we can’t commit to a time in the surgeon’s schedule to get this thing removed. I guess I’ll just have to trust that it will happen, just like getting her listed happened.
I am going to try to picture Ana a year from now – happy, healthy, in school. She’s singing and skating and taking Zumba with her friends. She’s fighting with Emily, but also laughing with her. We play Scrabble almost every night and we enjoy each other’s company more than we ever could’ve imagined. We are grateful for every hug, every overflowing bucket of popcorn at every movie, every cup of tea. Our house is decorated for Christmas AND Chanukah. Things aren’t urgent or uncertain. We have an understanding of Ana’s new life with her new liver and we are in a place to help another family somewhere…somehow. That’s all I can do right now – reach for this window and hope that someday I’m not looking through it from out here in the cold.
Tonight, I got a glimpse of this when Ana took it upon herself to braid Emily’s hair.
These are the moments I cling to.