2.7

Thursday.   Today Riley had a check up at the clinic. We had previously called Dr. K about the graft vs. host in his eyes (after the eye appointments). Riley also told him how the cramping in his fingers and joint pain had gotten worse. We were surprised to see that he had lost 6 pounds since our last visit (1 month ago).
The conversation went a little like this:
Dr. Katsanis: "Well Riley, your mouth looks worse, your eyes are obviously having problems, your joints are affected, you have lost significant weight in the last few months which means your body is not absorbing nutrients (graft vs. host of the gut), and to tell you the truth... your lungs don't sound that great either!!"
The GVH that Riley has experienced up until this point seemed to take a back seat in severity to the news that Riley now had it in several systems. The GVH of the mouth that Riley has had since November has been treated with a topical steroid gel. Now that it is affecting other areas he must go back on cyclosporine, an immune suppressant. This will hopefully tell his body to RELAX!  Right now he is at war with his new system. Since Riley started having GVH symptoms beyond the 3 month -post transplant- mark, it is considered "chronic". This means he could experience these symptoms for a year, five years, or forever. We have no way of knowing. ... Sometimes the symptoms can “burn out” after a couple of years. That will be our prayer.

Riley's doctor is a very serious man and had just explained the situation Riley faced. He then smiled and with an excited spirit said, "But the good news is when you have Chronic Graft Vs. Host, the chances of relapse are small!" Along with fighting off Riley's system, the CGVH also fights off any remaining diseased cells. This is known as "graft vs. leukemia effect".   Although that is good news, I still felt as though our world came tumbling down a bit.
. Oh... he was so close! Riley was down to the steroid gel for his mouth once a day and his bactrim pill only on the weekends. Now he would not only be back on the immune suppressant, but a slew of other medications BECAUSE he is on the immune suppressant.

I think we were in a bit of shock on the way home. Not a big surprise, but not exactly what we wanted either.   Obviously. We did agree that Riley was in a much better place than last year this time... That is Riley... so positive.

This is Riley's NEW line up. 

 

This is the packaging for the cyclosporine.  Each "skunk" smelling capsule, individually wrapped.  It makes for setting up the pill box for the week "a job"!