Dear Friends and Family....
Rachel came home from the hospital Friday. I drove up to Kansas City after work through relatively nice weather... some flurries... came back with Diana and Rachel through a nasty snow storm that ended soon after we passed through the Turnpike Gate and headed westward out into the Kansas countryside...
I have this theory, after five months of traveling back and forth, that Kansas City lies within a "Twilight Zone" locum where traffic and weather conspire against human kind... a crazy place.
Rachel's physical improvement took time after the biopsy, and her mental improvement became even more important as the days progressed after the surgery. She was moody and angry most of the time. She yelled at the doctors and nurses... she'd never been this way before to this degree. Of course with her unknown physical condition and the staff trying to figure out just what was causing her rash, etc. we had six sets of different doctors/pharmacists coming in at different times in the morning (dermatologists, bone marrow, allergists, pharmacists, general ward interns, infectious disease specialists)... all wanted to do the same listening to breathing, poking, etc... she was ticked off to the max.
The psych people came in with cute check-off charts/stickers/prizes for her to use to encourage taking different medications and ways to help her work better with the doctors. It wasn't working. There was something else that needed to be addressed... and I couldn't figure it out.
Finally, one afternoon, I was applying cream to her scabbed, rough skin and asked her to turn a bit so I could get to a spot... she snapped at me using words I am not accustomed to hearing from a child... especially my child. I got in her face and told her that this was NO WAY to talk to your parent and regardless of tubes, IV tree, etc... she'd find herself in a corner if she ever spoke that way to me again.
She looked me square in the eyes, not backing down a bit, and said angrily, "You weren't there for me... when they took me to the ICU room after surgery. I called and called and you didn't come!"
Bingo!! I thought we'd worked this out... and that's why I'm not a child psychologist.
The psych staff, nurses, doctors, and I had been working on getting her to take her medications, cooperate with medical treatment... etc. But her mental state was still in a bad state. I called the nurse clinician in charge of bone marrow... a terrific person who has a good relationship with Rachel. It was clinic day and most all the oncology staff was down in clinic with out-patients... so I left a message on her voice mail.
This nurse, her name is M----, supposedly works 8-5, Monday through Friday. She showed up in Rachel's room at 8pm! I talked with her out in the hallway first, explaining what had happened and that I thought Rachel was still closing everyone off as untrustworthy. I was a physical/mental wreck myself by then.
Marta went into the room after I'd talked to her and talked to Rachel until 9:30 pm (when do these people sleep???... and what sort of "real lives" do they have outside of the hospital???). She went over the "bad things" that happened after surgery and Rachel's anger about not having her Dad nearby afterwards. Once again she apologized and helped Rachel come to grips with the bad situation and the need to get beyond it and onto healing and getting out of the hospital.
After Marta left Rachel wanted to have a Coke Float... the nurse smiled, ran out the door, and had it in a minute!... first food Rachel had wanted after surgery, a week before. Then she wanted to do some crafts with me... another first in a week. I ran off to the craft room and stole colored paper, tape, etc... the nurses were smiling at me as I came out of the craft room.... different nurses would poke their heads in the door to see how things were going during the evening (nurses who didn't even have Rachel on their rounds)... just to smile and tell her how beautiful her artwork was.... We got a movie to watch and worked on our art... I let her stay up until she was tired (12:30). No problem for the nurse for the evening who even helped putting up some of the picures... OK, ok... I think I've sold you all on Children's Mercy Hospital!
The next day was much easier. For her bath I poured in an entire bottle of soap and we made a bubble bath. She put bubbles all over my head (and did the same thing to Diana while she was there). We walked around the ward... nursing staff and parents waving and saying hi... she was starting to trust people again.
Physically she began to improve dramatically. Diana showed up that night. They allowed Rachel to go for a walk off the floor with Diana... had them take a wheel chair just in case Rachel got tired. Diana said Rachel PUSHED the wheel chair herself... Diana could barely keep up with her. Obviously the lungs were on the mend.
When I showed up at the hospital on Friday Rachel and Diana were on the second floor balcony overlooking the main lobby... Rachel screaming out my name, jumping up and down... what a wonderful sight.
Since home Rachel has been to her school's open house this afternoon. Last night we went out to eat. Snow is on the ground and she throws it at us whenever we're moving from car to house or vice-versa.
The doctors are still leaning heavily toward an allergic reaction to bactrum, a common medication used for infection, rather than Graph Versus Host disease. I mentioned this to a friend recently who said she'd had similar physical reactions to bactrum given for a urinary tract infection. We're hopeful.
Tuesday we'll go back for out-patient clinic. Your thoughts and prayers are as always much appreciated.
Bill Sowers