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September 5, 2004 -- Maintenance #5 (Days 31-46) We think the rash Katie had a couple of weeks ago was an allergic reaction to the Clindamycin. After speaking with another cancer mom who told me her son had the same reaction after he was finished with his cycle of Clindamycin, I spoke to Katie's doctor about it. We'll have to watch which antibiotics she takes in the future. The vincristine (monthly IV chemo) hit her hard this month. She was complaining of back and joint pain. It hurt her enough to keep her from enjoying playing and crafting. It took her a week or so before the pain subsided. She was also very fatigued from it and napped almost every afternoon. I'm always glad to see her bounce back. We went to the Specialty Care Center in King of Prussia to get Katie's CBCs. We got to meet her future doctor, Dr. Julie Stern. She seems very nice. We're looking forward to relieving some stress by not going to the hospital for routine visits. Katie got to meet her preschool teacher last week. I had time to speak with the teacher about Katie's needs and how important it is to be notified if there are other kids in the class who are sick. I also gave her some pamphlets and a book about childhood leukemia so she would understand the treatment and side effects. Katie can't wait to start school in a couple of weeks. John and I are nervous about it, but Dr. Jill felt we need to focus on Katie's socialization and returning her to a "normal" routine. We are still trying to decide if Katie will be swimming this fall. She will be going to school 5 mornings and we're not sure if she'll be able to handle swimming, too. She also wants to take ballet classes. We may have to wait and see how she handles school every day first. I want to offer my special thanks to Tender Branches for donating postage and offering their time stuffing envelopes for KATIE'S WISH letter campaign for the Leukemia & Lymphoma Society's Light the Night Walk! Katie enjoyed working with the other kids putting labels, stamps and stickers on the envelopes! It was overwhelming for me to see these children so eager to help. Thank you again. KATIE'S WISH is named after a wish Katie made on a star... To find a cure for leukemia. KATIE'S WISH is a group of family and friends who are dedicated to helping make Katie's wish for a cure come true. We are participating in the Leukemia & Lymphoma Society's Light the Night Walk to raise money to help find a cure for all blood cancers. If you are interesting in joining KATIE'S WISH, making a donation or walking with us on October 16, 2004 at Gwynedd-Mercy College, click here. Katie wants to create a new holiday called--"Kids day". She says, "It's like mother's day or grandparent's day, but instead of coming one time (a year), it's four days a week." I told her that everyday is kids day! With hands on her hips, her reply was, "Then where are all my gifts?" Hmmm. We'll have to talk about this. We can't thank you enough for keeping Katie close to your hearts and in your prayers. We deeply appreciate it. Here is Katie's ANC and chemo/meds since last update: August 24, 2004: ANC 8280. Chemo/meds at home -- Stay at 50% for 6MP: 25mg (1/2 tablet) 6MP every evening. Increase MTX to 100%: 15mg (6 tablets) MTX weekly on Wednesday evenings. Continue with 1/2 tab Bactrim 2 times per day for 2 days (Friday through Saturday), 1 Viactiv daily, 1/4-1/2 tsp Zofran every 8 hours or as needed for nausea, 1/2 capful Miralax as needed for constipation/hard stools. Return in 1 week. August 31, 2004: ANC 2183. Chemo/meds at home -- Increase to 100% for all chemo. 50mg (1 tablet) 6MP Monday through Saturday evenings and 75mg (1.5 tablets) Sunday night, 15mg (6 tablets) MTX weekly on Wednesday evenings, 1/2 tab Bactrim 2 times per day for 2 days (Friday through Saturday), 1 Viactiv daily, 1/4-1/2 tsp Zofran every 8 hours or as needed for nausea, 1/2 capful Miralax as needed for constipation/hard stools. Return in 2 weeks for CBC and IV chemo with Dr. Stern. |
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