Monday, December 15, 2003

Interim Maintenance Begins


Apparently, my 15 minutes of fame are going to be as the “crap sandwich lady” of Caring Bridge, and you know what? That is perfectly fine with me! I absolutely LOVE that other families can identify with the same feelings and are sharing with me and with others their own crap sandwich moments. I vote we all pitch in our stories, call it “The Crap Sandwich Chronicles” and try to find a publisher. Who knows….we might be the next authors on Oprah’s Book Club! Harry Potter, look out!

For a really great crap sandwich perspective, check out Bryan’s site, written by his wife Karen. BRYAN'S PAGE Look for the previous journal entry dated December 12th. She hit the nail on the head (for me, anyway) regarding priorities in this day and age. Thanks, Karen, for letting me share Bryan’s site!

Those of you so inclined, please say a prayer for Cameron and his family; another little boy on our list who relapsed this past week. Cameron finished his treatment plan seven months ago with no problems, and I know we all hope and pray that his relapse treatment goes well.

Well, today was Kendrie’s first clinic visit in what is known as Interim Maintenance 1. (IM1) This phase of treatment lasts for eight weeks, and she was randomized to the arm of the treatment trial that requires visits to the clinic every ten days for IV chemo, instead of the daily oral chemo here at the house. Wow, 56 whole days without having to crush any pills and hide them in applesauce (a trick she caught on to about day 3!) She’s still on a preventative antibiotic two days a week, but that’s it for home meds. Woohoo, if I do say so myself!

Personality wise, she appears pretty much back to normal. The great thing about this arm of treatment is that she doesn’t have to take steroids for these eight weeks and I am thrilled about that. So no moodiness or rages (beyond what is normal for a four-year old!) Common side effects for these meds include mouth sores and low blood counts; we’re going to hope both of these problems skip us completely. (Hey, if you’re going to think positive, think BIG positive!)

You know that dance move that football players sometimes do in the end zone, where they put their hands together and move them in a big circle in front of their chest??? …. I think it’s called “stirring the pot”? (go ahead, try it at home, no one can see you as long as your web cam is turned off!) Well, Kendrie was happy about something the other day, probably the way one of her eight thousand Disney/Stanley printable sheets turned out, and she started doing this dance. Only she moves her hands up and down instead of in a circle, and for some reason she calls it “the pole dance.” So I’m sitting there looking at her, doing this goofy dance (she unfortunately got her sense of groove from her heterosexual, Caucasian father) and she’s laughing and saying, “look at me, doing the pole dance” and all I can think of is “pole dance”??? We are going to get through this leukemia thing only to see her grow up and become a stripper????? Is there really any justice in the world??? But that one moment alone, her giggling and shaking her booty, let me know there IS life after steroids!

For those who heard about the glitch in Blaine’s biopsy results --- the specimen was found today, and we should have the results in a day or two, according to the surgeon. Like I said before, it will be nice to hear the “all clear” officially. Thanks to all of you for your continued support.
Love, Kristie

1. Oral prescription meds this phase: (60) Total to date: (134)
2. All those stinkin’ back pokes!!! Lumbar punctures this phase: (3) Total to date: (7)
3. My first (and let’s hope last for a while) ER visit.
4. Spending so much time at home with only mom for a playmate. She tries, but just doesn’t grasp the beauty of playing cars and blocks like Dad does for hours on end.
5. Experiencing male-pattern baldness at the age of four.


1. Slowly but surely coming out of steroid-Hell!
2. Breaking down Mom’s resolve to keep me off her computer, and learning how to print all those Stanley coloring sheets --- big fun!
3. Breaking down Mom’s resolve, period!
4. Losing four pounds in four weeks (hey, Mom wishes she could do as well.)
5. Well, I always was pretty tender-headed, so maybe there’s a bright spot to being bald???

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