July 10, 2017: Day 231

I have not posted in the past 5 days.  Things are fine, we are doing well.  We have just spent the last 9 days in Cascade.  We don't have an Internet connection there and so it makes posting much more challenging.  It was nice to have the time away and not be thinking about all that has happened over the past months.  Not that we can pretend everything is as it was, we can't.  Doug still is struggling in many ways.  But, we could set it aside for a while and focus on family and nature.  That was nice.

I can see improvements that Doug has made since Memorial Day, the last time we were in Cascade.   This time he did not have any falls! He had two the last time.  Also he is able to walk inside with his walker.  Although he was much more confident when he was in his wheelchair.  He was able to get up and down from chairs more easily and able to get into and out of bed more easily and independently.  The progress is slow, but you could see progress.  He was also much more confident being away from home.  Last time he was pretty nervous about leaving home.

During Tom's band performance, with the grandkids dancing b
behind him.

As the vacation was coming to an end, once again I had to turn my attention to Doug getting retuximab infusions.  On Thursday, I called his neurologist to see if he would talk talk to the hematologist about getting the infusions and the benefits for Doug in getting them.  He was out of the office. But his nurse was able to contact him and he said he would call the hematologist on Monday.  I am not certain how supportive he will be, I hope that he will recommend the retuximab.  We did not hear anything today, but we can only pray that they will all decide to do the infusions. It would be so much easier on both of us if Doug could get the infusions hear in town and would save thousands of dollars. We also give thanks for our other friends who are reaching out to us and trying to help us find some other options for getting the infusions.  We hope something will work out.

And so we pray:

God of Wisdom, we pray for guidance us as we continue on this journey to wellness and wholeness.  As pilgrims on this road, be with us in the places that seem dark and unknowable and with us in times of joy and celebration.  Strengthen our confidence and trust knowing that no matter what lays in front of us, that you are doing better things for us than we can ask for or imagine. And as we travel on, we give thanks for the pleasure we receive looking out from the mountain tops and we pray for trust and hope the treatment that Doug needs will be made available.  Amen