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January 6, 2005 -- Maintenance #6 (Days 57-84) / Maintenance #7 (Day 0) Happy New Year to all!! Katie had a good month since the last update -- no trips to the ER!!! Her only complaint is that her back and legs hurt for a week after the IV chemo and her tummy is queasy from the mercaptopurine (6MP) she gets every night. Other than that, she's been feeling great. Katie was looking forward to opening presents from Santa. She woke up vomiting at 5am Christmas morning. She didn't care that she was feeling sick from her chemo, she just wanted to be sure that her waking too early didn't stop Santa from coming. We asked her if she wanted to check to see if he had visited us. John carried her downstairs to show her the gifts that Santa left. She got this cute little smile on her face and said, "OK, I can go back to bed now." She took her zofran, had some juice, some more sleep and was tearing through the gifts a few hours later, feeling great. Kyle was mostly interested in watching Katie and playing with the wrapping paper she tossed aside. Katie had her last spinal tap and intrathecal methatrexate (chemo to her central nervous system) this morning. The spinal fluid was clear -- no signs of cancer cells. She also received her vincristine (VCR IV push) and some IV fluids since she was a bit dehydrated. Katie started her 5-day dexamethasone pulse this evening. Katie blood counts looked good, but since her ANC was high again, Dr. Julie increased her oral methatrexate to 7 pills weekly starting next Wednesday. Katie is scheduled to see Dr. Julie on February 2nd for her last VCR!! We will get her off-treatment road map (schedule) then. We are excited and scared about Katie going off-treatment on February 19th. Without the chemo, there will be nothing suppressing the cancer if there are any undetected cells left. There is a 15% chance of relapse or reoccurrence of the cancer. Per Dr. Julie, the further from her off-treatment date she gets, the lesser the chance of relapse. We pray that Katie is one of the 85% of patients that has an event-free survival ("EFS" is used instead of "cured", which means survival without relapse or death). John and I will continue to watch for the signs that Katie had originally presented with -- unexplained back pain, petechiae, paleness, loss of appetite, and excessive tiredness. Katie will get monthly CBCs and check-ups with her oncologist or nurse practitioner. She will also have periodic echocardiograms and other tests to check for long-term side effects from the chemo. This will all be explained to us in detail at Katie's next appointment when we get her OT road map. Thank you for keeping Katie close to your hearts and in your prayers. Please, please continue to pray that she remains in remission. We deeply appreciate it. Here is Katie's ANC and chemo/meds since last update: January 6, 2005: ANC 2021, received IV VCR and her final IT MTX under GA at CHOP. Continue 100% chemo/meds at home -- 50mg (1 tablet) 6MP every Mon-Sat evening and 100mg (2 tabs) every Sun evening, increase weekly MTX to 17.5mg (7 tablets) on Wednesday evenings, 2mg DEX 2 times per day for 5 days (January 6 pm through January 11 am), 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 February 2 for CBC, and her final IV VCR at KOP Specialty Care Center. |
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