Days +52 - +61

There isn't much to write. We go to the clinic, Nate has blood draws, transfusions, nutrition appointments, physical therapy, growth factor shots, team meetings...At home he rests while I entertain Peter, pretend to be a nurse administering oral and IV meds and injections, prepare smoothies, and keep up with the clerical aspects of this life. Nothing eventful is happening which is a-okay. It is a wonderful blessing not to be combating challenges.

Nathan's recovery feels so slow but that is the nature of transplants. It's going to take a long time and we just need to be patient.

I am, however, running out of patience with his neutrophil count. It is high time those start getting busy! I love Nathan being cancer free and I want to keep it that way. This particular cancer is very difficult to keep away. Following standard protocol, Nathan has been on immune-suppressants to "lull" his new cells into not being aggressive. This is to prevent them from attacking his body, a condition called GVHD (Graft vs Host Deseise) that can range from annoying to deadly. It is an amazing balancing act. If the donor cells are too aggressive, horrible things can happen but if they are to complacent, the cancer can return.

Nathan was supposed to be starting the slow taper off of this drug last week, but, because he is still experiencing some nausea which could be a sign of GVHD, our new doctor decided not to. Although I know he is an expert in this field (he was one of the original team that pioneered bone marrow transplants), it's hard to have complete faith. At our team meeting this week I want to make sure he is aware that Nathan was not in remission before transplant. Before we were almost sent home GVHD was my biggest fear. Now it's problems with Nathan's body producing white blood cells and cancer returning.

Today I read about a recent study citing successful results of diminished GVHD with the use of cyclophosphamide after transplant. Nathan was the last participant in a study using this protocol and the doctors said they had so far been pleased with the results.  I feel very optimistic and blessed that he was on the trial.

If I listen to my feelings I know everything is going to be okay. I really have no doubt that we are going to go home and life will return to normal. That Nathan will live a long life and this chapter will be closed. I just need to stay away from statistics and not worry.

This last week Megan and Derek stayed with us. It was fabulous to have them here and hard to see them go. Derek and I got to work on a school project. It's something all of the kids have done in second grade. Each time they bring those clothes pins home I'm secretly wondering if we could possibly create something that looks remotely human, let alone from a particular country. Every time I am surprised and it turns out to be a great experience having some one-on-one time.

Nathan has ancestors from Norway and Derek decided to make a Viking. I was impressed by Derek's attention to detail and how meticulous he was in making sure he had the correct amount of facts written on his card and that everything was spelled correctly. I was one proud mom!

Derek also made a great fort on a "rainy day in Seattle," thus following the advice of one of his favorite Recess Monkey songs.