Hello Family and Friends.....
I took Rachel into Kansas City this morning for what is now our weekly visit to the hospital. We've gone down from two visits a week to one. She wore an outfit that reminded me of the 60's: long skirt with bright, gawdy flowers... all she needed was love beads and a colored band around her head with some peace slogan written on it... funny how fashions come and go and come back again.
As we progress from the bone marrow day (December 16, 1999) the dosage/numbers of medications are slowly decreasing. The strength of the steroid was lessened once again today... a lot less than what it was when Rachel started it in early January.
The steroids cause an unbelievable appetite and Rachel has been eating us out of house and home, day and night. We're looking forward to their end. New/old clothes no longer fit because of the weight increase due to the eating and Rachel went on a small shopping spree with Diana last night to get some clothes that will fit... thus the "flower children" skirt. Of course Rachel had to find a pair of pants that were as close as possible to the favorite pants her older sister, Amanda, wears... Amanda was amused.
The exam/tests proved that all is still well. The only problem is that there is still blockage around the Hickman catheter inside Rachel which makes getting blood out for lab tests difficult. Once again we spent an extra 1 1/2 hours there while an IV put "roto rooter" fluid (that's what I call it... I don't know the medical name) was put up inside the Hickman ports to dissolve the junk around the entrances inside her body.
We left the hospital at about 6:15... got home at 7:45... a long day, but Rachel was perky for most of it and only slept in the van on the way home.
Life has started to come down from the frantic level of the first six months after diagnosis to a strange kind of "normalcy." Once a week Rachel has piano lessons. Each weekday afternoon a homebound teacher from the public schools comes to our house to do school work with her... except for Friday which is clinic day (i.e. either Diana or I take Rachel to Kansas City).
Diana works during the day, Monday-Friday except for Thursday morning. I work nights, weekends and Thursday mornings (so my co-workers won't forget what I look like!). That way one of us is always with Rachel. The other kids have activities and need rides and we work out schedules of attendance/pick-up as best we can, also relying on friends to help out here and there as well. Diana has resumed her social group attendance and I've started working on our genealogy Internet pages again.
There is generally a positive feeling around us, but, of course always, in the background, looms the worry and the fear. I'm normally by myself at work and some nights I have what I call "panic attacks." I call home, trying to sound as casual/calm as possible, and ask how things are going. I know Diana is smiling on the other end.... "Bill, Breathe in, breathe out, breathe in, breathe out...." Isn't she funny?
Any slight fever, body ache, change in appearance or daily habit in Rachel brings forth "whisperings" (that's what Rachel calls them) by Mom and Dad. When one spouse goes to Kansas City on Friday for clinic the other spouse sits at work all day long in a state of controlled anxiety. We can't figure out which is harder... going to clinic with Rachel or staying at home waiting to hear what the medical folks have said. A lot of couples go to clinic together (some bring their other kids with them too)... I think I know why.
For many families it becomes a "team effort" (how many times have we heard that expression at work within the last ten years?).
When Rachel and parent come home Friday nights where ever the older kids are (work or a friend's house), they call.... "So, how's it going?" The answer has been "Fine" each time and one can feel the relief coming through the other end of the phone. Siblings play an important part in this whole thing as cheerleaders, caregivers, "adventure" takers (Kenny takes Rachel on an "adventure" to a different park in town each Tuesday afternoon), and reality-checkers (Emily and Rachel arguing about who gets the last fish stick or who gets to sit in the front seat of the car is a way of letting Rachel know that she still holds her special status of "the squirt" in the family).
So we continue to move forward. Each day I thank God for at least one thing good that happened... more often than not there are many things to be thankful for. We're also learning that there is a good side to that teenager word that drives so many parents/teachers crazy.... "Whatever!" I'm finding that I say it to myself when confronted with something in day to day living that would have sent me into orbit before.... Whatever! (though I don't know if I have the correct, irritating intonation that goes with the teenager version of the word down yet)
Thank you for your prayers, your thoughts/deeds of kindness.
Bill and Diana