Maren had her big day at clinic. We left our house at 7:50 am and left the hospital around 3:20 pm. One long day. Her ANC was 1600 - a pretty darn good starting point for this phase. The LP went off without a hitch although she did require more sedation than usual. I guess some children develop a tolerance to the sedatives. She needed about 5 hours of fluids before she could get the Cytoxan.
Maren was so good while we were there. She had a few outbursts, but for being 2 years old and having parents who were trying to force her to stay in one place and not touch anything for fear of germs she was a real trooper. Dr. Ritchey, her attending physician/head honcho, stopped in to tell us that he tells all parents in this phase to be prepared for an inpatient stay - not necessarily in the next week or two, but by the third or fourth week. Talk about being the bearer of bad news. Ick. I'm still holding out hope for no hospital stays or inpatient visits. Ever.
Our little sweetie is in bed now. We still need to give her 6TG (she gets it every night for the next 2 weeks). It's another tricky one. She needs to go 2 hours without eating before she takes it, and one hour without eating afterwards. And she can't take it with milk or have any dairy during the three NPO hours. It wouldn't be such a problem if she weren't so attached to her milk. Tonight my plan is to wake her up and give it to her with juice and hope she goes back to sleep without crying for "milky." I'll need to figure out something because starting in January we'll do this every single night for 2 years with a drug called 6MP. We just got our delivery of ARA-C and the sharps container to go along with it. The home nurse will visit Wed, Thurs, and Fri. to push these meds through her port IV. One more day down. 27 more to go.
8 months ago