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2:00 PM (Susan posting): We're home from the clinic and it went really well. She was a little fidgety about going into the procedure room when it was her turn for sedation. Last time she had a spinal tap, they had to pre-sedate her just to get her into the room. Today we managed to distract her enough to stay in the room and administer the sedation that totally knocks her out. During the spinal tap, in addition to administering methotrexate to prevent cancer from entering the spinal column, they withdrew some spinal fluid to test for the presence of abnormal cells. They will run formal tests, but the doctor said his preliminary examination showed no abnormalities. After she woke up from that procedure, they administered the doxorubicin (which turns her urine bright pink!) and vincristine. They reviewed the first half of the protocol with me and gave me prescriptions for dexamethasone (the steroid) and fluconisole (an anti-fungal medicine that is often administered along with steroids). She took her first dose of both about a half hour ago. Although as it turns out, the nurse practitioner just called to say she should not be taking any steroids at home today because they gave her today's full dose through her IV--not that they told me or her doctor that (I had called him before giving it to her to find out how to handle today's dose). As one of the parents at the clinic today advised, we had better make sure our pantry is fully stocked! We also have to be prepared for the swelling that is typical and will distort her appearance.

One interesting thing about the next few treatments is that she will be going in to the clinic on Wednesdays instead of Tuesdays (Tuesday, which is sedation day, is always very busy and she doesn't need to be sedated for anything). Of course, I had arranged my schedule to be off on Tuesdays instead of Wednesdays, so I'll either have to miss some meetings, or Randall will do the clinic visits for the next two weeks.

Tonight I'll drive to Durham to spend the night with a friend from work so I don't have to get up quite so early to catch my 6:30 AM flight tomorrow. I'll be flying to Seattle for a work trip and returning Saturday (the same day as Elisabeth). I planned the trip for this week so that Randall would only have one child while being a single parent. And the steroids shouldn't kick in too quickly, so I hope he won't find my time away too stressful.


Safe journey, Susan. I will pray in agreement that Randall and Sophie have a good time together while you and Elisabeth are away. Be blessed. Hugs and kisses all around. Love, Eileen