9:40 PM Another quick update. Sophie's had fevers on and off all day. The tylenol seems to help, which is great, but the fevers keep coming back. She's been on antibiotics it seems all day as well. The doctor took another blood culture this afternoon at 4:00pm. Depending on the results of that culture (which won't be back until 48 hours from the time the blood was drawn), we'll either be looking at a scenario where Sophie stays at UNC for two weeks or where she may come home (with us administering the antibiotics).
The doctor suggested the possibility of removing Sophie's chest catheter, particularly if it seems like it will become prone to infection. Sophie still gets monthly injections of chemotherapy through the line, but she can get the same drugs through an IV, which would mean getting poked once a month at the clinic for treatment. Given how needle-phobic Sophie has been lately (referring to the treatment room as the "Scary Room"), I don't know about that. Then again, Sophie was complaining about not getting to go swimming this summer, which she could do if she didn't have the catheter. On top of that, she will need to get used to needles, since she'll get monthly blood draws for a year after treatment finishes up next May. For the moment, we're hoping and praying that the infection clears up and that we won't be forced to make a decision one way or the other.
Sophie is now off all chemotherapy drugs (to help boost her immune system), but is still taking a bunch of medications--antibiotics, anti-fungal, antihistamines, anti-constipation, etc. So far, she has been a real trooper. I'm so proud of her. She is charming all the nurses and doctors at UNC, which never ceases to amaze me. I love to watch her interact with other people.
I picked Elisabeth up at a friend's house this evening--she went home with them since I could not get back in time to pick her up at after-school care. I think she's internalizing a lot of her worries and fears (I don't know where she would get that from), but it's clear that she is really, really concerned (I am too) and really, really wants to have Sophie home (I do too).
I'll go in tomorrow and relieve Susan. I'll stay the night at the hospital and let her come home and spend some time with Elisabeth and get some much-needed rest in her own bed. For now, it feels as if we are back to day-by-day mode, doing what needs to be done to get through the next 24 hours or so. In some ways, it is familiar (or as Elisabeth would say, "from-earlier"), but not any more comfortable.