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December 9, 2004 -- Maintenance #6 (Days 29-56) Countdown to OT: less than 10.5 weeks, 2 VCR/DEX pulses and 1 LP/IT MTX to go!! Katie's been doing very well--no illnesses or trips to the ER this month!! I hope it continues through the winter. We're excited and scared about what will happen when Katie goes off-treatment. It will take her body over a year to recover from all the chemo. She will still be vulnerable to infection until her blood stabilizes. We won't be as concerned about fevers once the port is removed. Katie started limping two weeks ago. There was no swelling or bruising around her ankle, but she was very protective of it. Her pain and limp seemed to get worse by Monday, November 22. I called Dr. Julie and she told us to come in that afternoon. Dr. Julie checked Katie's ankle and had her try walking different ways (toes, heels, jumps etc.). She felt the limp wasn't disease related so she didn't order a CBC. She believes Katie has a mild sprain and told me to observe her for the next several days to see if the pain or limp worsened. It took over a week to heal. We're relieved it wasn't a sign of relapse. Yesterday (December 8), Katie received her IV vincristine (VCR) and started her 5-day DEX pulse. She had a good check-up--everything looked fine. Her ANC was too high again (3444), so her 6MP (daily chemo) was increased. Hopefully, this will bring her ANC down to the ideal range (1000-1500). She is scheduled for her last spinal tap (LP) and intrathecal methatrexate (IT MTX) on January 6 at CHOP. Kyle had his 15 month appointment on Monday, November 22. He is 28 pounds 1 ounce (87th percentile for weight) and 33" tall (90th percentile for height). He is hitting all of his milestones, and then some. Kyle is into everything!! The faster I pick up after him, the faster he's made a mess somewhere else! He's a one-boy demolition team!!! Kyle had a reaction to his MMR (Measles, Mumps and Rubella) shot 7 days after his well check. He had fevers of 103, spots on his torso and a red face. Fortunately it didn't pose a problem for Katie. Wishing you all much joy and the happiest of holidays!! We can't thank you enough for keeping Katie close to your hearts and in your prayers. Please continue to pray that she remains in remission. We deeply appreciate it. Leave a message for Katie in her Caring Bridge guest book. Here is Katie's ANC and chemo/meds since last update: December 8, 2004: ANC 3444, received IV VCR, at KOP Specialty Center. Continue 100% chemo/meds at home -- 50mg (1 tablet) 6MP every Mon-Sat evening and increase to 100mg (2 tabs) every Sun evening, 15mg (6 tablets) MTX weekly on Wednesday evenings, 2mg DEX 2 times per day for 5 days (December 8 pm through December 13 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 January 6 for CBC, IV VCR and IT MTX under GA at CHOP. |
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