Looks Like Saturday - Today that is

Hey all,
Looks like we will come home on Saturday. We are both tremendously excited and completely nervous.  Just as our nurse says, we are more anxious about bringing her home now than after her birth.  This is primarily because Leslie has a depressed immune system.

Leslie's neutrophil count on Friday morning was 470, as opposed to around 200 on the 13th so the numbers are increasing, but this is before the chemotheraphy that was done later in the afternoon; we assume that her numbers will drop after the chemo.  An average person has a neutrophil count of 2,500 - 6,000 or so.  Essentially what this means is that she has no immune system.  Any temp over 101 will send her back to the hospital for a minimum 3 day stay for iv antibiotics.

Additionally, we must worry about her red blood cells and platelet levels, but these can be transfused as necessary, so our primary concern will be infections, infections, infections.

I'm sorry about the slow updates, with the holidays and the bouncing around between house and hospital, we are tired.  One final note.

Sadness strikes me at odd times during the day.  Today I was laying my niece down for a nap and the beauty of a babe slowly falling asleep reminded me of the times that I had rocked Leslie to sleep;  yet I regret that many of those times I was impatient for her to fall asleep because I had  to do X, Y or Z.  How I wish that I could rock her for two years straight and have this ordeal behind us.  That said, best case scenario we are 1% of the way home.

Happy Holidays,
Joe and Lori

quick and dirty

12/21/11
50/50 on whether we get to come home before Christmas.  The tube on her port in her chest was too long and not allowing the docs to use it correctly; it also may have been causing some irregular heartbeats so...
Leslie had another surgery to repair the port on the 20th.  As of this morning she still had some irregular heartbeats so we are definately not coming home today.  With her next chemo scheduled for friday, its also unlikely that we will be home before Friday as well. 

She still has significant pain in her hips, docs believe that this is a cancer related pain, and are currently treating this with morphine. 

So until we work out these blips, looks like we keep 2 households running for a bit longer. 

We don't know what we are doing here

12/20/11 
Really.  We don't know what we are doing here.  This seems like the easiest way to send info to the people who want to stay informed without being intrusive.  I will undoubtedly bore you so feel free to leave as you wish. 

Exactly one week ago, Lori was busy getting a bite to eat before going to UH city council; I was monkeying around the kitchen getting milk for all the kids when the phone rang.  I looked at caller id and saw that it was our pediatrictian.  Leslie had gone to the doctor that afternoon; she had been having headaches at night, strong enough to wake her up, intermittent fevers.  She was frequently tired, and just generally didn't seem like herself.  Kindergarten was reasonably new to her, and we figured that her teacher was just working her too hard.  I look at the caller id, glance at Lori - she's all hectic trying to get out and wondering why kids don't have any milk - and take the call. 

"Hi Joe, this is Dr. XX" (am I allowed to use names here?), pretty pleasant here, nothing odd, no bells or whistles.  "Leslie had some blood work done this afternoon and I want to go over some of the results."  This made me perk up a bit, and I told her that I would get a pen and pad.  Hemoglobin 7,800, normal 11,000 - platelet 43,000 normal 130,000 - white blood count 1,700 normal 8-10,000. So much noise was going off in my head I barely heard the doctor say that they wanted to see us at the hospital at 8am tomorrow morning.  At the University of Iowa, not Mercy.  I knew we were fucked before she said, "we want to rule out leukemia."