Dear Friends and Family -- January 13, 2000
Hello Family and Friends....
Once again it's much too late and I should be in bed. I got home this evening from Kansas City after my three day stay there with Rachel. Diana is now there. Amanda and she drove up from Topeka and I returned with Amanda.
Rachel's return to the hospital was a big disappointment for all of us after such a successful bone marrow transplant. She has a fever that just will not stay down for a full day. It's not a high fever and only appears for about an hour each night... that's it. But that's enough to keep her in the hospital which is but the best thing possible but still an irritation to us all.
After days of tests a spot on her lung was located which the doctor called "a bit of schmutz." (for the linguists out there... in German Schmutz means "dirt"). He's not overly concerned... says it's probably the "gunk" (another name for schmutz?
As of today the doctors/medical folks had decided on a new series of anti-biotics. I am always amazed at how Diana and I are included in these discussions... when Children's Mercy Hospital says parents/children
are part of "the team" they mean it! We are constantly asked our opinions and how we think Rachel will respond to this or that... and what we says matters... a little frightening at times.
For instance... this morning I remarked that even though Rachel was getting a lot of her nutritional needs through the I.V. bags she gets at night she was continuing to refuse the hospital meals (which really aren't that bad). I asked if it would be possible for me to go out to a nearby restaurant to see if I could find something Rachel might like.... she'd been eating at home and I wanted her to start eating at the hospital... part of her daily morning nausea was probably due to a stomach with medications and "gunk" but no food in it.
Within 15 minutes the hospital nutritionist was in the room with Rachel and me. She asked Rachel what kinds of food she liked... which restaurants. She told me not to worry and things "would be taken care of." That afternoon, in place of the hospital lunch a bag came from Wendy's with chicken nuggets, a pop, french fries and a chocolate frosty!!!! For the first time in days Rachel ate... and ate and ate. I was told that the hospital has a courier service and arrangements with restaurants in the area to get specially cooked restaurant food for patients who need to eat but will not eat the hospital food.... even the fast food places participate.
So.... Thursday Chinese food, Friday chicken from Applebees, Saturday a Happy Meal from McDonalds..... I've said it before... these folks bend over backwards... the only problem is I hope Rachel doesn't expect the royal treatment every night at supper when she comes
home.
The rash and itching that might signify a "graph/host virus" (old vs. new blood) has also shown up all over Rachel of late. We've been told that a bit of a battle between the host blood and the new blood is a good thing and not to worry.
Rachel's immune counts are a good indication that things are going
well along this line. Three days ago they were about 1500. Yesterday they were 2500. This morning they were 4900. 10,000 is where most of us "normal folks" hover... considering that her counts were zero on New Years Day we are amazed and thankful for this.
And Rachel's behavior has been on the up and
up day by day along with the counts as well. The nurse clinician for bone marrow transplant told Diana recently that Rachel should be the bone marrow transplant poster child of the year.... a body intent upon healing, a strong will, a positive spirit and a loving, faithful family.
She forgot to mention the family and friends who have been supporting us through prayer/word/thought/deed... Once again... thanks
Bill Sowers
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