Saturday... September 18, 1999
Dear Assumption School friends...
Diana and our oldest, Kenny, came out to Kansas City today and
brought Rachel and me home. Rachel will be here for a short morale-boosting
visit. She's scheduled to return to Kansas City on Tuesday but will
probably have to go back earlier as her immune system is still very low.
When we got home Diana and Kenny went to watch Emily's volleyball team played Topeka
Lutheran School while Rachel and I stayed at home. Afterwards the whole family was
home to have a late lunch before Kenny went off to work. Tonight we watched
Kenny, Emily and Rachel make card houses on the living room floor.
The second phase of chemo ended this morning. She has become more
at ease about the hair loss which comes with the treatment. She does get
tired of certain medical treatments... eye drops do not go in without a
struggle! ... but the nurses are experts are talking to kids.
Two days ago a nurse came into the room, right at the beginning of the day
shift, and said she'd been assigned to Rachel and was real glad to have her... as
all the nurses hoped they had Rachel each shift... as she is so pleasant. Hmmmm.... I guess they must forget about those more "difficult moments" they have with her!
Diana and I are now in the process of learning how to give shots... we'll give them once a day. These shots will help build up the immune system within Rachel. We've learned how to change the dressing on Rachel's
Hickman catheter and flush the tubes. A nurse from the local hospital will come cover and watch us give the first shot on Sunday if we're still here.
We're surprised at how much a part we take in Rachel's treatment. Rachel also plays an important part in her treatment too. She helps with some of the above procedures. That's one reason why the nurses like her...
she's very interested in what goes on, asks lots of questions and wants to take part as much as possible. It helps make things a little less scary for her.
Sometimes the doctors or nurses will be in the room talking about treatment of some sort and Rachel will pop in with a question of comment. At
first they were very surprised that she had such a grasp of what they were discussing... now they're either more careful around her or they include her in on the conversation!
This past week Rachel and I've played various card games (Go Fish, Old Maid, Crazy Eights, etc.) many, many times. We've also played Barbies every evening... not quite what a Dad expects to do every night! All of
the rooms on the oncology ward have windows facing the hallway with blinds. Most all of the blinds on the windows are always shut. Rachel pulled the blinds up every evening to watch people walk by and wave at them.
We've worked on schoolwork by ourselves and with the teacher supplied by the hospital. We've caught up on every cartoon show from my childhood as well as a host of new ones Rachel is familiar with.
Rachel can't go out of her room at all so we have to keep busy there. She has gotten a ton
of cards and we read them and put some up on the wall of the room in the hospital. People from Assumption and St David's Church in Topeka as well as many people from Holy Cross Church in California have written her. Each card is fun to open and look at.
Today when she got home there were a bunch of cards from the 8th grade class at Assumption too. When Rachel was asleep this past week (and I wasn't!) or she was working with a hospital staff member on something I worked on projects for work and our hobby, genealogy,
on a laptop computer in our room... so I kept up on my "homework" too.
Once again thanks for the gifts and prayers. Time permitting you might want to include all the children on the oncology ward at Children's Mercy Hospital. We've met several parents of babies with leukemia. Also
there are older children... one of them goes for rides down the hall on his IV pole with his mask on with his Dad!!
This is very long-winded... but we wanted to keep you up on things.
The Sowers
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