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June 23, 2004 -- Maintenance #4 (Days 42-56) Happy Summer to everyone!!! Katie had a good month despite the nausea associated with the increase in the chemo. She has also been vomiting most mornings right after she wakes up. I'm getting tired of washing pillows and sheets!!! Her moodiness and defiance hit an all time high this past month. It should be 'interesting' to see how she does with this dexamethasone (DEX) pulse. I've got four varieties of pasta and chips on hand for when the cravings hit. I hope I got the right ones!!! Katie met with Dr. Reilly this clinic visit (Jill was at a conference). She was very nice. Katie did well with the port access and her check-up. Her counts were good. Her ANC was still a bit high despite the increase of the 6MP and methatrexate last month (ANC 2013). Dr. Reilly said that they usually wait a full cycle (three monthly CBCs) before they would increase it again. Next month she goes for her spinal tap and chemo to the central nervous system, and will see Dr. Ann Leahy. Katie should be ending her treatment two years from the start of her Interim Maintenance #1 phase. She should officially end her treatment on February 19, 2005! Prayers needed... Finally -- I've added pictures to Katie's web site!!! There are new photos starting from a few weeks before Katie was diagnosed and Christmas day 2002 at the hospital through February 2004. I'll have more pictures up by the next update. I hope you take a moment to look through them. Please leave a message in Katie's Caring Bridge guest book. She enjoys hearing from everyone! Our mantra... "There is no humor in medicine, but there IS medicine in humor!" Katie decided to create another painted masterpiece. Kyle was sleeping so I went to do some laundry. After about five minutes, she called for me to come see her creation. "I used the kitchen table as my canvas. I mixed all the colors together to make a rainbow! Whatta you think?" Nothing else came to mind, but "Wow!" I wondered where I should start cleaning -- the paint dripping on the floor, the table, the chairs or the splatters on the wall!! Let's not forget the mess in the bathroom left behind from her cleaning her hands -- walls, sink, floor, step stool and my new towels!! Then she said "Oh no! Don't tell Daddy! Here's the plan... I'll distract him in the living room and you can give him dinner in there. If he stays in there, he'll never know I made such a mess!" Katie has been such a drama queen these days. John and I try not to crack-up in front of her. Just the other day when I was putting her to bed, I told her no more TV. She started crying and said "No more TV forever? That's like---a gazillion years!! How un-fun!!" I am constantly reminding Katie to use her manners. When she is polite, I often smile at her and tell her 'she's so cute.' One time she said, "I don't feel like using my manners anymore." When I asked her why, she replied, "I'm cute enough!" We will be heading to Ocean City, NJ with my parents and my brother's family for two weeks. We are looking forward to a much needed vacation. The worst part of her moodiness from this DEX pulse will be while we are at the shore. Let's hope she doesn't have the whole family running away screaming!! Many, many thanks to all of you for keeping Katie close to your hearts and in your prayers. We deeply appreciate it. Until next update... Here is Katie's ANC and chemo/meds at last clinic visit: June 23, 2004: ANC 2013, received IV VCR at CHOP, continue chemo at home -- 50mg (1 tablet) 6MP Monday through Saturday evenings and 75mg (1.5 tablets) on Sunday evening, 15mg (6 tablets) MTX weekly on Wednesday evenings, 2mg DEX 2 times per day for 5 days (start June 23 in PM, end June 28 AM), 1/2 tab Bactrim 2 times per day for 2 days (Friday and Saturday), 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 mixed with 4 ounces of juice as needed for constipation/hard stools. Return in 4 weeks (July 22) for CBC, lumbar puncture, IT MTX, IV VCR with Dr. Ann Leahy. |
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