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September 22, 2004 -- Maintenance #5 (Days 58-63) Who would have thought we would be happy about a viral meningitis diagnosis?!?! Katie is doing much better. She had some ups and downs with fevers and headaches, but seems fine now. It was very scary seeing her so sickly looking (again!). The NP called regarding Katie's follow-up and said that since she got her IV VCR (chemo) while in the hospital and is on 100% daily chemo at home, we didn't need to come in, unless she looked sick. We opted to stay home. The effects of the IV VCR and her steroids have kicked in and are hitting her hard. Katie's been complaining of hip, back and leg pains, and is very tired. Her mood swings are mild this round, but her white food craving is back. White bread, plain bagels, white rice, regular pancakes, plain pasta and pizza with the sauce and cheese scraped off seem to be her favorites this round. Katie started pre-school today. (see photos) She'll be going every morning from 9-11:30. She had a blast and was beaming ear-to-ear when I went to pick her up. We sat on the bench outside the school and she told me about everything she did today. I'm putting my trust in the teachers and parents of the 21 children in her class, to notify us if any child is sick or has exposed Katie to anything that could be life threatening (like chicken pox). It's a wonderful environment at the school and we are thrilled that she is able to go. I'll still be worrying every minute she's away from me. Katie will hopefully get to meet her new oncologist on Wednesday, October 13th. We are going to attempt her next spinal tap and IT chemo under sedation at the King of Prussia Oncology Center. If it doesn't go well, we'll have to go to CHOP on Thursday and do it under general anesthesia. Thank you for keeping Katie close to your hearts and in your prayers. You have helped us get through these difficult times. Katie's chemo/meds since last update: Continue with all other meds/chemo at 100%. 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, 1/2 capful Miralax as needed for constipation/hard stools. Follow-up with Dr. Julie Stern on October 13. Need prescription for other anti-nausea med. |
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