Yesterday was a rough day. Willie woke up feeling nauseous and dry heaved a few times before we left for the cancer center. He wanted to sit in a chair in the common area to prove to Dr. Lenny that he was feeling well, but the nausea got the best of him and he chose a bed.
"Still in bed I see." Lenny said as he entered the room. He wasn't smiling as broadly and it felt like bad news was forthcoming.
He asked how the scope went and we told him the good news from the Endoscopy doctor.
"I called the pathologist a few minutes ago and he said he hasn't received tissue samples for Willie yet. We'll still wait and see if there is some kind of bacterial infection, but I think it's time we treat this like Graft Versus Host Disease."
We stared at him in shock.
"But the doctor said his gut looked good." I rebutted.
"And that is good." Lenny agreed. "But he has far too many symptoms for me to say it isn't GVHD. I think what we've got here is a really mild case that we've caught early before it has damaged the gut which is a really good thing."
He smiled after saying that, but we didn't return the sentiment. It was as if he had taken all of our high hopes from the previous day and incinerated them in front of us.
"So what does it mean moving forward?" I asked.
"We're going to give him a steroid treatment today and tomorrow. He should start feeling good this weekend which is a really good thing, but it will also indicate to us that it is GVHD." He had removed his mask at this point and was staring from Willie to me to make sure we understood what he was saying.
"And what happens after this weekend?" I needed all the details.
"When you come back on Tuesday we'll see if the steroids helped. The test results from the scope should be back by then so we can see if it is simply a gut infection, there is a chance it could just be a bug."
We smiled at that.
We are hopeless optimists.
"I just want to let you know that I don't think it's an infection though." He said, bringing us back down. "The clinical presentation is identical to GVHD so I need to treat is like that."
What a bummer!
We sat in silence for a moment until I could formulate the scrambling thoughts in my head into a question.
"And what does this mean for our future? Is this a set back?"
Lenny broke into a broad smile and reached out to pat Willie on the back.
"Not at all." He said, reassuringly. "This is all part of the game and it's a good thing we're catching it early. If it is GVHD it is a very mild case and we'll treat it with steroids. You'll still get out of here by day 90."
We both perked up at that. It was the first time any doctor had hinted at the idea of getting out before the 100 day mark, although we've heard plenty of first hand accounts of people being released in around day 80.
"Have a good weekend." He said, slapping Willie on the back. "You're going to be feeling so much better."
Willie nodded in response and Lenny left.
Neither of us said a word.
The nurse gave Willie a dose of the big-dog IV nausea meds he had during radiation treatment, and we hoped for a better afternoon.
The IV didn't change anything and he was throwing up as we left the cancer center and dry heaved all the way home. When we got back to the apartment he slept for a while then woke up and ate something and took the steroid.
I think we were both expecting something magical to happen immediately, but we were sorely disappointed.
He was still nauseous so he laid down to take a nap and I sat on the couch staring at the wall. It's days like these that I want to forget. We had allowed our hopes to soar so high from the endoscopy results that I had never expected to hear the GVHD threat. I know that it is not necessarily bad news, but it definitely disappointing news and I hadn't prepared myself for it. I know in my heart that everything will work out and in comparison to many of the other bone marrow transplant patients Willie is doing well, but the roller coaster of fear that we ride can sometimes become exhausting. It's days like this that make me want to raise my hands in the air and shout "I'm done now, let me off the ride."
We are both grateful to have Lenny along for the ride though. Willie was feeling better last night and we talked about the discussion with the doctor. We agree that it is a bummer, but we will do whatever we need to do to get him feeling better. We are blessed to have such an astute doctor as we have in Lenny to take such excellent care of Willie.
On a brighter note, Willie is feeling better today. He went for a walk in the courtyard and is currently playing baseball on his PlayStation.
Thank you all for the continued prayers and words of support.
Happy weekend to all!
See you Tuesday.
(hopefully with better news!)
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