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September 12, 2003 -- Maintenance #1 (Days 14 - 20) I hope everyone is enjoying the month of September. Time is just flying by for us (well, at least for me). Kyle and Katie are keeping me busy -- Kyle with feedings and diaper changes, and Katie with potty training, crafts and activities, reading, etc. We went to the clinic on September 3 (Maintenance - Day 14) for her CBC. She seemed fine and I wasn't concerned about anything (other than Katie not wanting to go to bed at night). Her ANC was 380. Dr. Rock suspected she may have a virus that knocked her counts down. We weren't due back to the clinic for two weeks, but Dr. Rock felt it would be better to keep a close eye on her and have her back in a week. Swimming and ballet were not allowed -- any contact with groups of children where she can catch something is off limits. Katie was off all meds and we were on fever watch until her next appointment. We went back to the clinic on September 9 (Maintenance - Day 20). We were expecting her ANC to be back in a good range. To our surprise, it had gone down to 200. Again, she seemed perfectly fine to us. Dr. Rock suggested we keep her off her meds for another week and remain on fever watch. The rash on Katie's inner arm that we thought was shingles (a few weeks back), may actually be a reaction from the weekly oral Methatrexate (MTX). The same rash is also around her nose, mouth and chin, which tend to be common areas for the MTX rash to appear. It doesn't seem to bother Katie and the reaction isn't a cause for concern. Katie is due back at the clinic next Tuesday (we're switching her from Wednesday to Tuesday so she can attend her classes when her ANC is over 1000). Even if her ANC is low then, she will still get her Vincristine IV push and oral Dexamethasone for 5 days. We were hoping to get back into a "normal" routine by now. It will just have to wait until her ANC is in a good range again. We are working on getting a group of friends and family to join us for The Leukemia & Lymphoma Society’s Light The Night® Walk at Gwynedd-Mercy College on Saturday, October 4. It starts at 5:00pm with family activities, food and music. The 2-3 mile walk (casual stroll) starts at 7:00pm and winds down around 9:00pm. Every registered walker receives an illuminated balloon (red for supporters and white for survivors). Our group is called "Team Katie" and we will be carrying a dedication banner to show our love and support for our hero -- Katie!! It's an opportunity for a community to come together to support people with cancer, and should be a very uplifting experience for all!! |
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