Friday, November 16, 2012

Weekend Getaway

I guess that's what we will call it "a weekend getaway".......Realistically we will be hanging out at MD Anderson all weekend waiting on cultures to grow, waiting on labs to get back, waiting for answers.  Waiting.

The morning always starts pretty early.  Usually, the rounding melanoma team is in our room by 8am.  They are always very thorough and never rush us.  As much as I don't want to be here, we have really enjoyed Dr. Davies and Jessie this past week.  I was shocked when they came in this morning and told us they still were waiting on labs/cultures/etc.  I thought for sure because they changed his anti-viral medicine last night they were on to something.  I was sure they were going to come in and tell us Steve was having a CMV flareup.  CMV (cytomegalovirus) is a virus that 60-80% of the population is exposed to by the time they are 2 years old.  As long as you are healthy, you typically will not have any symptoms, or may have cold like symptoms (and just assume it is a cold).  The virus usually just lays dormant in your body.  When you have a weakened immune system, the virus can reactivate.  Steve has ALL of the symptoms of CMV, even jaundiced, yellow eyes which I had brought him in for on the 5th.  I still **expect** when they get all of the tests back that they say this is what he has.  The problem is the anti-viral medicine used to help with the infection can only be given by IV.  So, at some point, if we ever get to leave, Steve may go home with a PICC line and anti-viral meds.  But again, this is all Dr. Google Jenn's theory.  We will see what all of the tests bring.

When Dr. Davies was in this morning, he gave us the run down on what to expect for the day.  Steve would have a chest Xray to make sure there was no pneumonia working it's way in since he has developed a bit of a mucousy cough.   Dr. Davies also ordered an MRI of the brain because Steve has been extremely fatigued for the last 2 days.  One might think "hey, he has had a lot done, it is normal to be tired."  Well, it's not that kind of tired.  It's the sleep HARD for 36+ hours and hard to waken.  He slept through every vital check, every phone call I had, every time I opened and closed the door, etc etc etc.  So, Dr. Davies wants to be sure nothing is going on upstairs. (CMV can affect almost every organ in your body, even your brain). He hasn't had the MRI yet because he had to have another spinal tap also.  They had to take a lot more spinal fluid this time, so he has to lie flat on his back for 4 hours.  So, the earliest they can do the MRI is 10 pm tonight.  The MRI team is 24 hours.  They may do it late tonight, or early in the am.  Steve also had a bone marrow biopsy earlier this afternoon.  It was kinda neat to watch.  They did it right in the room.

 Steve getting prepped for the bone marrow biopsy.

Between all of the blood they have taken, IV's (they move them from arm to arm every couple of days), lymph node biopsy, 2 spinal taps, and a bone marrow biopsy, I think he is tired of being poked.  That is just a list of the "pokes".  He has also had a back Xray, spinal MRI, PET scan, urine tests, had dermatology check all over him, and had probably over 30-40 doctors, nurses, students, techs, etc through our "rotating door".  Needless to say, he is mentally exhausted.  He is ready to go home.  He missed Sadie and Ashlynn.  We sure hope to have more answers over the weekend and/or early next week.  Next week, his actual melanoma doctor will be the doctor on rounds - yay!!  (Although we were more than pleased with Dr. Davies and Jessie this week too).

I will be thinking of all my BAMW's this weekend!  You guys have a BLAST at the walk.  I wish I were there to hug each and every one of you!


  1. tears in my eyes thinking of how hard this must be for everyone, especially Steve! Does he still have a port that can be accessed? may answers come your way SOON!

  2. thought my response was posted, here goes again. tears in my eyes thinking of all the pokes, i remember being a pin cushion, OUCH. Prayers that you get answers soon!

    1. Yeah, it was weird. I got an email saying you commented, but the comment wasn't there. Who knows what happens in internet land!

      Thanks for thinking of us! Hopefully they can find some answers and get us out of here soon.


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