Not Home Yet

I must have been excited about the Super Bowl. I didn't remember that I didn't blog yesterday! We did not go home today because Ron is going to have ECP in the morning at 8:00. The ECP machine is portable, so his treatment will be in his hospital room. His breathing treatments have been changed to using a scheduled inhaler with the same medication as the nebulizer. He will continue to be on Advair and singular for his lungs.

The goal of the ECP light therapy is to "balance" his T-cells, so his new marrow doesn't fight so aggressively. Then he should need less steroids to control his graft versus host disease. The steroids decrease his immunity which leads to infections. Dominoes. We will come back to Ann Arbor two days a week through March for these treatments. Then he should transition to every other week for a period of time and finally, to once a month. Again I might mention that it was wonderful having Dr.Mag on service in the hospital during these 10 days of hospitalization. He will be back in the clinic for Ron's appointment next Wednesday. The continuity is priceless.

So this is what we do. It is our new normal, and we still have every reason to believe that we will be able to resume more of our previous life by spring and summer. I tell Ron how grateful I am that he has been willing to go through all of this, so we can have more time. There have been so many more complications than we ever could have imagined.

Looking forward to going home tomorrow!! We still get excited about returning to Gilead Lake. Our new bed was delivered 2 weeks ago, and we have only slept in it 3 nights! And of course needy Blue will be so happy to see us. He has some Siamese markings and temperament, so there is always lots of talking and meowing.

Thanks for following our journey. We have never felt alone.
Love from Ann Arbor,
Ron & Jan