The Waiting Game

Steve has had three very, very rough days since my last blog late Monday night.  I have been out of town, moving Molly back to Madison, WI and getting her settled in her dorm.  When we left the house around 1 on Tuesday, Steve was still able to swallow.  As the girls and I got on the Tollway, he texted that he wanted a smoothie.  Luckily, his brother Rich was able to leave work and get to Prentice.  That was the last thing he ate, as the mucositis did, unfortunately, travel to his throat. It has been extremely painful and swollen to the point that he could not swallow any liquids.  I feel so badly for him.  He also started a temp on Tuesday morning, the staff got on it immediately, it spiked around 101, and today was back to 98.4....then went up a bit, so precautions are still in place with antibiotics.

The hospital asked to move him again, as his room is needed for the VRE-positive, or suspected positive patients, and those people are on the north side of the north wing of the floor.  They will have their own staff that will not go in the rooms of those that test negative.  Steve is now on the south side of 15, with an east (somewhat) obstructed view of the lake.  It's so nice and bright, I just love it.  Kevin and I spent most of our visit moving him.  He has business files, a printer...and a full snack pantry.


Said hello to two "new" patients...they still have hair...as they walked.  One very young man, a PhD from Northwestern and now a professor at the University of Chicago, told me he just started bruising.  They ran labs, called him, and said, "come to the hospital tonight."  He is on Day 3 of his first chemo cycle.  Leukemia totally out of no where, which seems to be the common thread with everyone you talk to.  Another younger man, fuzzy headed, saw me in the hall a few times and we made jokes about running into each other, he with rolling IV stand in hand, trying to exercise as Steve did until this week.  I'm trying to make a point to speak to people and offer an ear, it is VERY isolating socially for both the patient and their family.

I asked about the mucositis during shift change tonight.  They said it is more a function of GvHD and not so much just the chemo.  Almost everyone does have some symptoms, and Steve has more than average, but certainly not the worst of this condition.  He doesn't have any appetite, so that's good.  He can't swallow any pills, either, yet I think they have some of those in liquid suspension form that can be squirted down his throat.  He seemed to hit the pain med button less often as the evening went on, and is remarkably lucid for someone taking such strong meds.  

His WBCs are .2 today, .1 Wednesday and Tuesday;neutrophils still TLTC.  Hemoglobin is at the magic 7.0 number.  He did get blood and platelets today.  Tomorrow is Day +14.  We are playing the waiting game for engraftment of Mary's stem cells and just have to be patient.  After FOUR MONTHS since diagnosis (this Monday), we can wait a bit longer to get where Steve needs to be.  

Signing off tonight with a few pictures of Madison from this week.  The photos are inspirational to Steve and allow him to focus on the future.