5:00 PM (Susan posting): This is hard. Having Sophie be on steroids again is hard. Trying to manage the life that has gone on around us while Sophie is on steroids is hard. All things considered, I think she's doing well, but it's just challenging to see her so affected by the medication. The doctor says she's likely to lose all her hair during this phase, and that just makes me sad on so many levels. A bald child is such a visible reminder to us and others that she has cancer. It's nice to be able to go out in public now and not have to explain to everyone we encounter what the situation is (or to have them openly stare and say nothing). Perhaps it's just denial on my part, but the fact that she's kept so much of her hair is somehow comforting to me (perhaps on some level it makes me think she's strong or her body is better able to tolerate the medications), and to have that go away is scary.
Sophie's behavior while on steroids is very similar to how she was in the first few weeks after she was diagnosed, so it brings all kinds of old emotions back to the surface (for all of us, I guess). Steroids also make Sophie more demanding (and we've got two kids at home until the end of the month), so whoever is home with the kids during the day generally feels pretty overwhelmed, epsecially if there are demands and tasks other than childcare on the agenda for the day. With my recent trip, all of this has fallen to Randall (at the same time that there are a fair number of church meetings and he's trying to finish off that paper). I worked just a half day today and will stay at home tomorrow, but I don't know how much that will undo the stress of the last week.
Things should ease up in the next day or two. We realized we have another opportunity to visit my mom and grandmother before school starts for Randall and Elisabeth, so we're going to head up there on Wednesday after Sophie's treatment (assuming we can manage to get loaded up in reasonable time to make it to the clinic). It will cut off over an hour of travel time to leave straight from Chapel Hill. We'll have to return Saturday to be home in time for the Sunday service. This will probably be our last opportunity to visit until Christmas break. Mom suggested that we leave Elisabeth with her when we come home on Saturday and then she'll meet us at clinic the following Wednesday (she has the week off). She's smart!