Party girls

All is well. Jim's 2-week executive ed program for non-profit leaders in the arts ends tomorrow. It will be nice to see him again (:-). It seems to have gone well, as usual, and I even managed to squeak out a couple of days of teaching, as though things are back to normal. It was good to throw myself into work but was also somewhat surreal, watching myself act like a professional who isn't thinking about her kids 24 hours a day.

The girls are doing fine. Dayssi is sleeping in her own bed and, with the exception of last night, when Jim heard talking and found her sitting in her chair with a book at 2:30am, she has been sleeping through the night. India is waking off and on, calling "mama mama mama" in a panic, but then she falls back to sleep without much coaxing and doesn't seem to remember waking up or having had any nightmares. Being the sleep freak that I am, I attribute these night terrors more to exhaustion than anything else and I suspect that once I can get the girls to bed earlier again that this problem will resolve.

We've had a lot of late nights as we are taking advantage of every possible opportunity to party while Dayssi's counts are good and she is feeling healthy. The fireworks were a lot of fun, although they didn't start until 9:45 pm and we didn't get home until 11:00pm. We heard the New Orleans Preservation Band play jazz for a few hours beforehand and enjoyed watching Dayssi entertain the crowd by dancing animatedly on my lap while facing those sitting behind us whowere, on occasion, in tears from the hilarity of it. The next night, on July 4, we attended a barbeque at Liz and Reed's, which also ran a little late as we couldn't bring ourselves to separate from them. We are, as I like to say to the girls, ka-pooped!

I met with India's prospective therapist yesterday and she suggested that while many of India's current behavioral quirks might be attributable to her responses to Dayssi's illness and its ramifications, many are also developmentally appropriate, and some are consistent with sleep deprivation. I think I've mentioned before how difficult it has been to get the girls in bed at a reasonable hour these days, especially with the 6MP which has to be given at bedtime, but 2 hours after eating or drinking. It gets late. Next week India and I will go together and India will get to meet Dr. Larson. I'm looking forward to hearing the assessments of both parties and am going to feel very relieved to have the support of such a warm and experienced professional.

On Friday Dayssi has her first dentist appointment with a dentist who specializes in children with health problems. She'll be taking a big dose of antibiotics before the cleaning. We've received a couple of mailings from the dentist already to prepare Dayssi emotionally for the visit, and at some point soon we are supposed to receive a Dentosaurus book in which, among other things, she gets to record each of her visits. I hear there are lots of toys and other distractions at this office, including a DVD screen ABOVE THE CHAIR where she'll have her cleaning. Shouldn't all dentists have that??

We start Phase III of Dayssi's treatment (interim maintenance?) on Tuesday of next week. Jim checked the protocol and he thinks we'll stay on the 6MP pills for this phase, and introduce an oral methotrexate once per week. This will be confirmed by our nurse practitioner later today. Dayssi's counts are still decent -- her ANC (indicator of immune system strength) was 1600 last week, which is still within the normal range, but is also way down from about 5000 the previous week. So we are headed downward, as expected, because the chemo is taking out her immune system. It makes us anxious to move into this territory but it is par for the course. Soon we'll be washing hands obsessively again and keeping Dayssi away from crowds. And we'll be hoping to keep the serious infections at bay.