Steven was given another nice reprieve at the clinic Thursday morning. The good doctor declared all tumors stable. While he did mention some possible small growth again in the the brain stem tumor, Dr. G was also reassuring in telling Steven that his brain basically looks the same as it did in February.Building 10, NIH
While thrilled to be living the status quo, this clinic visit was a bit odd. Steven's MRI was late into the evening, and Building 10 was eerily quiet. The MRI and clinic days aren't on the standard TH/F anymore! The clinic itself had moved several floors. And we didn't see any familiar "vhl" faces in the waiting room this time!
It's funny how the smallest changes can throw us off!
Waiting for my sweet boy...
The protocol nurse was able to explain away most of our restless thoughts, as the clinic had simply changed days and needed to change floors to accommodate this new time. When we laughed about being worried that Steven was being phased out of the study, this wonderful nurse did remind Steven that this study will not be forever, and that it has nearly run it's course.
The expected time frame, for now, is another year of biannual visits followed by several years of yearly visits.
Then the study concerning the natural progression of VHL tumors in the central nervous system will be complete, and my sweet boy will again be at a crossroads in the care of his diseased body.
He may decide that it is time to look for a study that treats VHL with chemical agents.
He may simply get lucky if this present study can again be extended.
He most likely will have to rely on a team of local doctors.
He will, without a doubt, need to hope and pray that this country starts finding the status quo unacceptable.