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July 23, 2004 -- Maintenance #4 (Days 57-84), Maintenance #5 (Days 0-2) I hope you are all enjoying the summer so far. We had a fun time on our vacation. We spent two weeks with my parents and my brother's family in Ocean City, NJ. The kids had a great time at the beach and on the boardwalk. We rented a surrey, played miniature golf, went on rides, played on the beach, sculpted a mermaid in the sand and jumped waves in the ocean. The weather was perfect. (Click here to see pictures.) Katie had another fever a few days after we came home from the shore. We ended up taking her to the CHOP ER. Since her ANC was over 3000, we were able to go home after her infusion of Ceftriaxone (a broad spectrum antibiotic that is effective for 24-hours) and monitoring. It was a long night (7 hours in the ER until 2:30 am), but Katie was a real trooper the whole time. Katie had her clinic visit at CHOP yesterday. She was scheduled for her spinal tap (LP), chemo to her central nervous system (IT MTX) and IV chemo vincristine (VCR). She was vomiting in the car on the way to CHOP and in the waiting area. We met with Dr. Powell for her check-up. He was hesitant to go ahead with the LP and IT MTX because of the vomiting and her sickly appearance. I told him she was probably sick from the 6MP (chemo) she gets each night and since she hadn't had any zofran in over 24 hours, a dose of zofran may settle her tummy and perk her up. He agreed to give her IV zofran and fluids. If she returned to "normal" within 5 minutes, he would consult with Dr. Jill Ginsberg (Katie's regular oncologist) and Dr. Ann Leahy (Katie's LP oncologist) to determine what they would do. Katie returned to her usual self within a few minutes. Drs. Leahy and Powell checked on her several times while she was doing her crafts in the waiting area. After an hour or so, they decided to proceed with her LP and IT MTX under general anesthesia. She received her IV VCR when she woke up. Everything went well. Katie's ANC was 645. Since her ANC is low, Katie has to return for CBCs for the next two weeks and have her meds adjusted until they bounce back to where they should be. We'll have to limit some of her activities while her ANC is low to prevent illness and infections, and watch for fevers. She's been complaining of back pain and is very tired today, but she usually feels crummy after getting her LPs and VCR. Next month (August 18) she gets her IV VCR in the morning and a bone density scan in the afternoon. Hopefully we'll have a better idea of how thin her bones are and what measures we can take to improve them. I'm hoping to have at least 10 team members registered before September 10th so we can get a banner with our team name -- "KATIE'S WISH". Click here for instructions on how to register online. You can also call 610-521-8274 ext. 225 to register over the phone. Please mention "KATIE'S WISH" as your team or Patty Harr as the team captain. Katie's latest funny... She was whining almost non-stop all day today and it was really wearing me down. I asked her to please stop. She replied, "I wasn't whining ALL day. I took a nap for a little while!" We will be setting up a guest book on this web site. In the mean time, please leave a message for Katie in her CaringBridge guest book. She loves hearing from everyone. Many, many thanks to all of you 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: July 13, 2004: CHOP ER with fever of 100.7, ANC 3000, received 30-minute infusion of Ceftriaxone and sent home, continue meds full strength. July 22, 2004: ANC 645, received lumbar puncture, IT MTX, IV VCR at CHOP. Reduce chemo/meds at home to -- 25mg (1/2 tablet) 6MP Monday through Saturday evenings and 50mg (1 tablet) on Sunday evening, 7.5mg (3 tablets) MTX weekly on Wednesday evenings, 2mg DEX 2 times per day for 5 days (start July 22 in PM, end July 27 AM), 1/2 tab Bactrim 2 times per day for 2 days (Saturday through Sunday), 1 Tums daily or 1/2 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 (July 28) for CBC and again the following week (August 4) for CBC. IV VCR and DEXA scan at CHOP on August 18. <Note for myself: Katie's port now gets accessed with a 3/4" needle, but it sticks out about 1/8" and needs padding.> |
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