Day 54.

Last time I posted I praised the steroids that saved the day; today I hate them! 
Everything was going along fine until Thursday afternoon when Willie broke out into a full body rash.  This is one of the warning signs of graft versus host disease and they have been watching his skin since transplant.  It was obvious now that Lenny was right about Willie having GVHD even though the scope results were negative.
I called the cancer center to see what we should do and nearly fell to pieces when they said Lenny had a day off.  We don't expect our doctors to have a life outside of our needs!  He has been there every time we go so we decided it was probably OK for him to have day off once a month...
I talked to the doctor who was filling in for Lenny, but she didn't know our case and just said to put some anti-itch cream on the rash and check in tomorrow. We were hoping to start the steroid that day, but it seemed we would have to wait.
The rash was still raging when we went to the cancer center on Friday.  The nurse drew labs and reported that Lenny was still out so we would see someone else.  Again, we nearly fell to pieces.  It's funny how easy it is to become attached to one doctor!
One of our favorite nurses, Sandy, came by to say hello.  She is quite the talker and we always enjoy hearing her stories.  We showed her Willie's rash and smiled.
"Well there she is." She said brightly.  "Looks like your donor is showing up!"
I appreciate her bubbly attitude about a dismal rash.  She assured us that these rashes are common and it just tells us that his body has recognized the cells he received are not his own.

Willie was sitting in a chair for the first time and we were really hoping to impress Lenny with his progress, even if it involved a full body rash.  A few minutes later Lenny came around the corner and we nearly shouted our hello.
"It's good to see you in a chair!" He said to Willie.
"We thought you had the day off." Willie returned.
"I did yesterday." He confirmed.
"Only one day off for you!" Willie replied and we all laughed.
"So what's new?" Lenny asked.
Willie lifted his shirt in response.
"Well, there it is." He smiled.  "This confirms our suspicion of GVHD."
He wheeled a computer over and started typing rapid notes.
"We'll hit you with an IV dose of prednisone today and then put you are a large oral dose.  This will make you even more immune compromised so we'll need to add another anti-fungal medication."
He looked at us to make sure we were keeping up and we nodded in response.
His fingers flew over the keyboard at a dizzying speed as he continued to make changes to Willie's meds.
"The steroids will probably make him diabetic so we'll get you a blood sugar meter and some insulin." He said casually as if it was no big deal.
"Hang on." I stopped him. "I'm not interested in giving him insulin shots, can we do a lower dose on the steroids?"
"Unfortunately not." He shook his head. "Now that we know it is GVHD we need to give him the highest dose to attack it.  We can't afford to let it get worse."
We nodded in agreement, but my anxiety was reaching the limit.
"This is your field Missy." He stopped typing and looked at me. "You know how to control his blood sugars.  I won't order the insulin and if you find that his sugars are in the 300 and 400 range then I'll just call in a flex pen for you and you can pick it up."
It was the only compromise we could reach so I agreed.  The last thing I want to do is start injecting Willie with insulin.
He gave him the steroid and we went on our merry way.  Later that night his blood sugar shot to 300 so I forced him to drink some water and go for a walk.  That pulled his numbers down to 220 and we went to bed.  On Saturday his sugars were up and down all day.  I have worked myself into an anxious mess.  I know if I had the insulin pen on hand I would have the security of knowing that if his sugars shoot too high, we'd have a back up.  Instead, I control his carb consumption with an iron fist and poke his finger multiple times a day to check his sugar.  That is the part he is least excited about.
It's ironic that after all we've been through, a simple finger stick to check his blood sugar is pushing us both over the edge.
Willie is having a rough day today and threw up this morning.  There is definitely something happening in his gut, and we can only hope it's a good thing.
These are the though moments that we have to go through to get to a brighter future.
Keep the prayers coming that he will respond well to the steroids!

Happy Weekend!