November 22, 2016: Day +3

We woke up early to a knock at the door at 5 minutes before 7.  Not a morning person. I have been setting the alarm for 7 because typically our doctor or nurse don't get here before 8:30.  But this morning, our nurse was early!  I was jumping out of bed throwing on my robe, running to the door, but luckily, Doug was up, already dressed and just brushing his teeth.  I think this says something about how he is feeling. He was up and ready to go. Getting dressed is a really big event for Doug. It is one of the harder things he has to do all day. Today he looks and feels better than yesterday.

Before Doug started treatment we went through and rated all of his symptoms on a scale from 1 to 10.  My thinking is that we will rate how he is doing month to month.  That may adjust as we move through this process.  HSCT is meant to stop the progression of the underlying disease.  Having said that people may get skills back.  People who are early in the disease in the relapsing remitting phase are most likely to get their skills back.  People who have had it a long time are less likely.  More than 80% of the time the disease is stopped in all people.  We of course hope and pray the disease is now stopped and the icing on the cake would be for Doug to get skills back.  I am not going to stop praying for that as well.  

A couple of days ago when Doug's wheelchair broke, he was really heartbroken.  He said, I don't want to loose my independence.  I told him we are stuck in the apartment anyhow.  You have a walker and a transport wheelchair we can make this work.  He is now primarily the walker to get around the apartment.  And I think.....he is more stable.  I think...he is getting up and down easier.  I think his left leg is dragging less.  I know it is subtle, and I almost hate to say anything, but I think we are seeing some improvement.  

Also, in the months before we came, Doug had developed some choking problems.  He was choking really easily.  He would pound his chest.  I am surprised he did not leave bruises.  I was just thinking about this and realized that he has not been choking in the last few days.  Do we dare hope?  This certainly is an issue that we often hear resolves early.

I just read him the blog and asked him if he agreed. He said yes, I think so.  As we talked, I said today you have been able to stand-up from the couch by yourself and use the walker.  Just last week, I was needing to help him come to a stand to get into the wheelchair.  

It is early, but it does seem like we are seeing a little improvement.  I also know this can be a roller-coaster for 3 years.  People gain skills and then loose them.  Sometimes it is 2 steps forward and one step back process.   But today we are hopeful.

And so we pray:

Holy One, we are so grateful to have small things in our lives that give us hope where there have been shadows and darkness. We are delighted to have moments of joy that lighten our hearts and we are so thankful for the quiet moments in the day for rest and restoration.  Be with us now as we prepare for sleep, help us to rest in your presence and wake to the hope of a new day.  Amen