May 8, 2003 -- Delayed Intensification #1 (Day 21)

We just had Katie's appointment for Delayed Intensification #1 - Day 21 (Wednesday 5/7). Katie's ANC was 110 this week (still unable to fight bacteria and infection). We continue to be house bound with no visitors, other than adult family members helping us. She is off all meds for at least one week now and returns to the clinic next Tuesday (5/13) to check her counts. If her ANC is over 1000 and her platelets are at the correct level, she will continue this phase without interruption, and start her new chemo treatments Wednesday (5/14).

We are not having as good a week as last week. Katie has been sick since Wednesday (4/30) and is complaining that her back and joints hurts again (the side effects of the Vincristine (VCR) and Dexamethasone (DEX) have caught up with her). We are back to giving her Dilaudid (stronger than Morphine) to control her pain. She can't stand or put any weight on her legs or feet. Her belly is severely distended and Katie's breathing is shallow because her liver and spleen are enlarged. She's starting to loose her hair again. She also has night sweats and wakes often through the night. Her moods have been swinging like crazy, too. She hasn't moved off the couch and has mostly been coloring, watching movies, reading stories and wanting us to rub her back or hold her hand.

The DEX is causing Katie's hunger cravings (salty, spicy or tomatoey). I've been a short order cook for the past week. Mostly the food has been acceptable to her. One of Katie's eating binges lasted over 4 hours long, going from one food to another. I made French fries, spaghetti, homemade spaghetti sauce, rice, chicken nuggets, tuna salad, elbow macaroni, tortilla chips with salsa, and eggs. The fries were "too small", the spaghetti "didn't twirl right" on her fork, but the sauce was OK, the rice fell off her fork too much, she ate two chicken nuggets and then wanted to know what happened to them (telling her she ate them was the wrong thing to say), the tuna was "stinky", the macaroni was "the wrong shape", the salsa was "not spicy enough", and the eggs "got cold too fast". John gets to deal with the evening snacks! Now, she's only eating elbow macaroni with homemade sauce, corn on the cob and chicken nuggets--much more manageable.

At least we knew what to expect from some of the drugs this phase. It's stressful, but not too surprising. Our routine changes each phase with the drugs she takes. Right now, we are all trying to get to bed around 8:00-8:30 at night, knowing that we will be getting up for late-night snacks and bedding changes (she urinates a lot from the VCR). We're hoping the effects of the intense drugs will start to wear-off over the next couple of weeks. We're going need to get some rest for when the new baby comes!!

For Mother's Day weekend, we are going to have family movie night on Saturday evening with pop-corn and lemonade. Sunday, John is making me breakfast (in bed would be nice) and the dinner of my choice. The three of us are going to try to spend the day reading stories, talking and relaxing together.

NEXT: May 14, 2003 -- Delayed Intensification #1 (Day 28 - ON HOLD)