A New Week
Ana has a follow-up appointment at Columbia tomorrow with Dr. Martinez, the pediatric hepatologist. She was supposed to go to Westchester on Tuesday as well, but we’re going to get her bloodwork drawn at Columbia and sent to Dr. Hochberg so we don’t have to drag her out of school and to the city twice in one week. Jim will take her, I’ll try to work.
I have to meet with someone at the Kingston School district in the morning to give them a medical history on Ana. She is in the middle of getting classified for special ed services with the goal of (hopefully) getting her some tutoring help when she’s out of school after her transplant. She met with two people from the district while at school last week and did pretty well (based on my conversation with her about it). She said that she did extremely well on math – the person testing her said that she got farther than any 6th grader she’s ever tested.
Ana has another cold. Even though her blood counts were normal, I think her immune system isn’t great. She was feeling pretty miserable this weekend, starting with a sore throat and of course a constant low-grade fever that went as high as 100.8 (I am SO glad that port was removed). I am very happy to report the awful rash that caused her so much pain last week has almost completely resolved and she’s back on Celebrex (we’re watching the rash closely).
Ana’s skin is very dry and peeling in places – I don’t know if this is something connected to the tumor or something else. It started this past July and only got better after she started Prednisone and improved her diet, but it’s happening again. She’s not eating as well anymore, but thankfully hasn’t lost any weight. It worries me. Just like her distended stomach and pale, tired face, it’s a reminder that she’s not well.
Our bags are all packed now – including Emily’s. We jump when the phone rings and I keep trying to visualize when we’ll get the call, and how we’ll handle it and how I will be able to get through that long, long surgery. Can I hold my breath for 9 hours? I walk around with a constant ache in my heart. My dreams are haunted with awful, anxiety-riddled images that I can’t quite remember. I keep wondering if I’m wasting moments. Am I taking time with Ana for granted? I want to hang onto these days of quiet almost-normalcy as long as possible, but I feel them slipping away.