The doctor’s call the day of the bone marrow transplant day zero. Then every day afterward is called day plus 1, day plus 2 ect. So today is day plus 24. Billy got the transplant on June 3, today is June 27. Billy got released from the hospital on Monday, Jun 22. We’ve been staying at a hotel about a mile from the hospital. We’re going through all this with no direction. They’ve told us little about what to expect, mostly generalities like ‘you’ll be sick and have diarrhea, then the next week you may spike a fever. You may lose your hair and beard.’ Billy is still nauseous and has diarrhea. His hair, beard and body hair are falling out. It’s surprising how awful he feels and how weak and tired he is. He has to take a handful of pills twice a day. I’m trying to keep him eating, drinking and moving. We managed to have a nice 30 minute walk today at a park not too far away. I read some information today about what to expect after a transplant. I didn’t realize that he has the immune system of a newborn. Billy had chicken pox, but now it’s as though he never had it. It could be 3 months to a year before he feels good again. What I read said that a year after transplant he’ll have to have immunization shots, like a baby. This is shocking to us. We thought he’d bounce back about like when he had chemo. His numbers still aren’t that great, and he had to have a platelet transfusion at the doctor’s yesterday. His white count was 1.72, hemoglobin was 7.4. so his counts aren’t anything to get excited about. I wish we had a roadmap of what to expect, what’s to come.
We’re staying here at the hotel until after Billy’s doctor appointment on Thursday, July 2. Then hopefully we can go home and get ready for the 4th. Jason & Janice want to have Judah and Evangeline’s birthday parties on the 4th, so Janice’s family and Parker, Lisa’s fiancee, will be there. Billy’s sister, Lisa, is flying in to stay with us for a week, so she’ll be there. Joe and family and Joanna and Nick will be staying with us. Trisha’s mom will be there. It’s going to be a crowd and I wonder if Billy should be around all these people. It’s something we’ll have to talk to his doctor about next week.
Right now Billy is sleeping peacefully and hopefully doesn’t feel very sick. He looks so different. He’s so brave. I love and need him so much.
A Little Bit of Everything, With Love 