October 9, 2019– Day +20

Thank you for all of your words of encouragement yesterday. I woke this morning with a renewed sense of hope.

Today is surgery day. I’m not exactly sure why it was pushed out a day—I heard first that they didn’t have room in the schedule yesterday, but also heard that the kidney team wanted to keep him on continuous dialysis as long as possible before disconnecting him for surgery. Either way, we are trusting that today is God’s perfect timing. Bo will head to surgery at 12:30pm PST to replace his central line for dialysis. Please pray it goes smoothly, that nothing is missed, and that he doesn’t have any excessive bleeding from the site.

We learned yesterday that Bo’s CMV test results came back and the virus has grown. This means the virus isn’t responding to the anti-viral med as hoped and his new white cells aren’t yet mature enough to recognize and deal with the virus. This means that we are moving on to Plan B. Plan B entails Bo getting some new cells, but different from his bone marrow cells. These new cells come from healthy individuals who are CMV positive, but their bodies have recognized the virus and successfully developed immunity to it. Bo will get those cells hopefully on Friday as they need to be flown here from Washington DC and then thawed. We are told this is the new “cutting edge” treatment for CMV re-activation after a bone marrow transplant. It is essentially a clinical trial of sorts, but the results have been overwhelmingly positive and we are hopeful.

Bo is still having fevers. We are hoping that they are related to CMV and not an infection, but only time will tell. Please be praying that once he gets the new CMV fighter cells that his fevers will cease and that all blood cultures remain negative for bacterial infections.

Over the last 12 hours, we have been able to reduce Bo’s oxygen and the rate at which he’s receiving it through his nasal cannula (the little breathing tubes under his nose). This is a HUGE praise, as it means that things are improving with his respiratory system. We just took the cannula off this morning and things are appearing stable. Only time will tell if he’s ready to be breathing completely on his own, but we are encouraged!

I was able to leave the hospital yesterday for the first time since we checked in back on September 9th. It was hard, but it ended up being really good. I laughed because we checked into the hospital and it was summer, and I walked outside yesterday and it was clearly fall—very crisp! So many people have reminded me of the importance of self-care in this season, but I’ve been reluctant. I didn’t realize how easy it is to lose perspective and feel discouraged when you are buried in hard stuff and can’t see outside of it. Leaving the hospital was a good exercise in trust for me, remembering that Bo belongs to God and He will care for him whether or not I’m there.

Thank you for your continued prayers. My heart was so comforted yesterday by your comments and texts. So many of you have walked through suffering yourselves and have tasted the discouragement of sitting in trials wondering when it will end. Your reminders of hope keep us going. We know we will get to the other side, it’s just hard to see it right now. Thank you for praying us through ❤️