Day 49. Half Way There!

The steroids that saved the day!

Willie is doing 100% better!  The steroids did the trick and he has been feeling good since Sunday.  Yesterday he was feeling so good, we took a trip to his favorite gun store down the road and looked around.  His appetite has increased and he actually gained 1 pound! 
He was looking forward to sitting in a chair for his appointment today to impress Dr. Lenny.  This is the first time he has felt good enough to be in the common area and we couldn't wait to hear what Lenny would say about it. 
It was not meant to be though.
When we arrived at the cancer center they ushered us quickly into the back isolation area like they did when he had C-Diff.  We told the nurse that he did not have anything contagious and requested a chair and she insisted that he had been sneezing and coughing.
"I saw in his notes that they did a nasal swab last week." She said as she escorted us into a private room.
"Then you also saw that the results were negative." I corrected.
"Yes, they were negative, but if he is coughing and sneezing then we can't risk him sitting in a chair."
Willie and I looked at each other and rolled our eyes.  This is not the first time they have confused his symptoms with someone else so I'm sure they were taking caution for someone elses's cold. 
It's too ironic that the one time he was actually feeling well enough to sit in a chair, the nurse wouldn't allow it!
Lenny came with the results from the blood work a short 45 minutes after we arrived.
"I see you're still in bed, but at least your sitting up today!" He said as his usual greeting.
"I asked for a chair, but they think I'm contagious." Willie insisted.
Lenny laughed and assured us that he would fix the status in the computer.
We filled him in on Willie's good weekend and Lenny smiled with satisfaction.
"The results are still not back on the pathology of the scope, but the fact that the steroids fixed everything means that we still can't rule out GVHD."
"What do we do now?" I asked.
"Now we wait for the pathology results and see how he feels." It wasn't exactly a definative answer, but we would take it.
"You're labs are perfect today so there are no concerns there. You're looking good man!" He said as he opened the door to leave.  He paused, then leaned in and gave Willie a fist bump before leaving.
We definitely like Lenny.
Willie had a great afternoon with no nausea.  He ate a good lunch and is requesting tacos for dinner.  I know he's feeling better because he has started making comments about how good the food on TV commercials look.  He even said McDonald's fish bites looked good, which to me, look disgusting!
I got a phone call from Lenny about 6 PM.
"I just got the pathology back from the scope and everything is negative." He said.
"Hoooray!" I shouted into the phone.
The other end was silent.
"That is a good thing, right?" I asked because of his silence.
"It is a good thing." He assured. "But we still can't rule out GVHD.  We usually diagnose based on symptoms and the pathology backs us up.  If we find that the symptoms return and he starts feeling bad again then we will move forward with GVHD treatment."
I was quiet for a moment as I processed this.
I'm so sick of good news not really being all the good.
"So what happens if he feels good for a few weeks then..."
"Starts feeling bad again?" Lenny finished my thought. "That won't happen.  If it is really GVHD then he will start feeling bad again within the week.  We'll check in at your Friday appointment and see how things are going and just take it day by day from there."
I sighed and agreed.  I find it hard to relax when there is still a thread of GVHD on the table.
"Have you ever seen a case where someone improves from taking a few doses of steroids and doesn't need any more after that?" I asked hopefully.
"Yes, I see it all the time.  All this started when he got the C-Diff so there is a possibility that the inflammation was from the infection and the steroids fixed that.  I personally think that is what has happened, and that will be our best case scenario.  Only time will tell."
"We'll hope for the best case scenario!" I said brightly and he laughed in response.
"Yes we will.  See you on Friday."
I hung up and reported the news to Willie who was relieved-ish.  I don't think either of us will be totally relieved until we see what the coming days bring. 
In the meantime, we'll pray for more good days!