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March 16, 2003 -- Interim Maintenance #1 (Day 21) Katie had her visit to the clinic on Wednesday (3/12). She had her labs done and we met with the doctor. Her ANC was over 1400, so she could go back on her meds. I thought they would start back at day 14 where we left off, but during this phase, they want her to keep plugging along. She started with her day 21 meds on Wednesday evening, and was not too happy about it. Since Katie's immune system is suppressed, we have tried to be very diligent in keeping her clean, especially her diaper area, where infections can occur easily when her ANC is low. Last weekend, Katie was complaining that her privates hurt and were itchy. We spent a few nights with little sleep with her discomfort. With her low ANC, it can be very dangerous for her to be exposed to any germs, so we didn't want to have to take her to the ER at CHOP unless it was absolutely necessary. We tried a few different remedies the doctors at the hospital told us to try. On Wednesday, when her doctor got to look at her, we discovered that Katie had developed a sensitivity to soaps and cleansers. From now on, we have to bathe Katie in water with generous amounts of mineral oil or Eucerin lotion. We also have to watch the use of wipes when we change her diapers. She's feeling much better now! Katie started walking with assistance. She started with just a few steps last weekend and has worked her way up to walking from one end of the house to the other. She needs to hold onto someone or something when she stands and is still very wobbly. She is very proud of herself and, of course Mommy and Daddy are very proud of her, too!! She's been playing more this week and keeping me busy with crafts. It's really nice to see her smile, laugh and enjoy herself. Katie has to go to the clinic on Wednesday (3/19) for her labs. They are going to do a CBC, and check the drug toxicity levels. They want to make sure she's getting what she needs from the meds, and to also make sure nothing is effecting her liver. If her ANC is over 1000, we will go to CHOP on Thursday and she'll have a spinal tap, spinal chemo and IV chemo. Then she comes home to 7 days of intensive oral chemo. Hopefully, this won't set her back too much. |
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