Our new reality

2/17/10   Wednesday

Another relatively smooth day.  Some pain in her right shoulder necessitated an ultrasound for a clot – negative.  Her WBC (white cell count) is falling as expected.  She is functionally neutropenic although not quite numerically there.  She now has to avoid all fresh vegetables …  She is asked to put up the rails of her bed to ensure that she will not fall out of bed and bleed.

Memee, Ray and Ru came for a visit, and, no surprise, bring more food (they sent the first batch with others).  Comfort congee.  She is really heartened by this visit.  Memee was the kids pediatrician and both Ray and Memee were mentors when I was a resident.  We always stay with them when we visit Madison.  As much as anyplace, their home feels like (but doesn’t smell like) a comfortable old shoe where one can slow the pace down and feel warmth and snugness, and gain perspective.  To this day, we still ask them for advice, and it is still right on.  I missed it as I am in cyclic vomiting clinic with tough cases.

It has been merely one week and we now exist in an entirely different universe, one we couldn’t have imagined a week ago when we were in our normal routine.  One, we expected to be in for one night for a transfusion.  One on the brink of life and death.  One in the hospital 24/7.  One where silent stem cells and their genetics hold all your cards. 

I start my morning in Teri’s room at Froedtert Hospital, go to the adjacent Children’s Hospital for work, return to Froedtert and eat supper with Rachel, John, Dad & Teri, stay for the evening watching the Olympics, return home first to Dad’s condo to check on his medications and mail, and finally home by 11 pm.  It’s strange to spend one’s working and family life within the hospital, sort of like being a resident in training again.

Each night, Rachel and John brings in home made gourmet dinner in a cooler  for us to eat.  We take over a table and set up chicken enchiladas, Israeli couscous, refried beans, chocolate chip cookies (baked by John).  D. the nurse brought us ice cream and sherbert to go with the cookies.  We think Rachel should open a boutique catering business.

It is great to have Rachel and John here!  Teri said tonight that it was great to have John here and get to know him and for him to become an essential part of family, albeit under duress.  The two have taken over and cleaned, organized, cooked, baked, shopped, finished our Chinese New Year’s letter with a late addendum on Teri’s illness, and most of all, brought life into our home.  Teri is loving it.  Teri’s organizational genes have been passed on successfully!

We thank you all for your prayers and best wishes.