We were able to get back home and begin his chemo as planned. Although the dacogen (chemo) is supposed to be pretty gentle, the first round hit him pretty hard. We are not clear if that was just because of all the previous treatment, the shingles, the disease or a combination of everything.
Being back home and in between doctors has been very challenging. There was a tremendous amount of miscommunication between doctors and Joe simply wasn't receiving the care that he desperately needed. We made the extremely difficult decision to move back to Durham for our care going forward. We feel confident that moving back to Duke was the right decision, but as you might imagine, it is devastating for all of us.
We moved back on Monday and had an appointment with his doctor here. They were pleased that they would have closer eyes on Joe through this treatment. We reviewed our options with them and unfortunately at this point they limited to either continuing dacogen or hospice. Although we are more beat down than ever, we still have some fight left. So we continue with chemo.
After getting 5 bags of platelets Joe had a new hickman placed on Tuesday. It is causing him quite a bit of pain this time, which his PA believes is due to scar tissue from the last two lines. Please be praying that his pain alleviates and that no infection is forming. If all continues to go as planned he will start round two on Monday.
We are trying to figure out ways that we can be with Arleigh with us more this time around. Please pray for us. Pray for our hearts our minds and strength. Pray for Arleigh, that she knows she is loved that we long so badly to be with her. Pray for our conversations. Pray for clarity. Pray for laughter and joy in the midst of this season. Pray for physical comfort for Joe. Pray for our doubts and our fears. Pray for God’s hope to fill us. Pray for our time together. Pray for a supernatural will to fight. We are in an incredibly difficult place and we need your prayers.