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April 10, 2003 -- Interim Maintenance #1 (Day 49) This week has been a good week so far for Katie. On Monday (4/7), I was concerned about some bruises she had on her legs. Her doctors are always asking if she's had any bruising (possible sign of low platelets). When I called her doctor about it, she wanted to see her first thing Tuesday (4/8) morning for a check-up and CBC to determine if she needed a platelet transfusion. Her ANC was 5412 and her platelets were good. The bruises were of no concern this time. Over the past few weeks, Pattianne, the nurse practitioner, has been evaluating Katie's development. She said that Katie's language skills, vocabulary, pre-math and pre-reading skills are at a four-year-old to pre-kindergarten level. We were very happy to hear that. John and I have been spending a lot of time working with her and making academics fun. Katie's last oral chemo was taken last night for Interim Maintenance #1 (Day 49). She will still continue taking the Bactrim, which helps prevent pneumonia and fungal infections. She loves to negotiate to get her weekly treat earlier. She can really put on the charm with the sweet voice and batting eyelashes. It's difficult to say no to her, but we have to stick to the rules "If you take all your medicine, you get your special treat on Saturday". Wednesday (4/9), we didn't have to go back to the clinic since her counts were good. She did have an evaluation and her first PT visit at the Specialty Care Center in Chalfont that afternoon. Katie loved it!! Eric was great with her and is very familiar with the side effects of her chemotherapy. He fitted Katie to a walker that we can borrow for as long as she needs it. Eric said that many three-year olds don't want to use walkers, but I assured him that she was starving for her independence and would take to it immediately. He gave her a "driving lesson" and she was off and walking! Katie and I have been doing laps around the house with her walker. She wants us to put a basket on the front of it so she can carry toys around with her. The way she's motoring around, I think we need to put a horn on it, too!! Next week is going to be a busy week. Monday (4/14) I go for my 24 week OB appointment. I'm feeling good except for the sciatica and occasional cramping when I'm lifting Katie too much. Katie's walker will help with that. Tuesday (4/15), Katie has another PT appointment (we refer to it as "play time" on her chart). We're hoping to get her muscles strengthened as much as possible before the meds from the next phase kick-in. Wednesday (4/16) she goes to the clinic in King of Prussia for a CBC. If her ANC is over 1000 and her platelets are over 100,000, she will start Day 0 of Delayed Intensification which lasts for 56 days from the start of the meds. She will get a two-to-three hour infusion of Doxorubicin (DOXO), and an IV push of Vincristine. They will attempt the spinal tap and spinal infusion of Methotrexate at the clinic. If it doesn't go well, we are off the CHOP on Thursday (4/17) for general anesthesia and the spinals. Friday (4/18), Katie goes back to the clinic for Pegaspargase injections in both legs and monitoring. She will also be starting high doses of oral Dexamethesone (anti-leukemic steroids) at home. Katie had a little cold early in the week and seems to be fine now. John and I both have sore throats now. We're trying to keep a distance from Katie and are washing our hands until they are raw. We have to keep Katie well before and during the Delayed Intensification phase. I'm hoping for good weather over the next two months so we can at least go outside and get some fresh air. I'll try to send an update next week after Katie's Friday appointment. If I don't get to write before next weekend, we wish everyone a Happy Easter!! |
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