Friday, August 14, 2009

Status Quo

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.

3 comments:

Angela said...

Glad you are home and with a good report. Remember, one day at a time. hugs

Britt-Arnhild said...

I am hoping and praying with you!

Lynnette Kraft said...

Hello. I'm just out visiting for a bit today - not something I have much time for but here I am! :) Don't ask how I got here, because I have NO clue! ha!

I'm not sure what this disease is that your son has - I've never heard of it. It must be such a struggle at times... yet, he's worth every bit of it isn't he? We had a daughter with congenital heart defects and I always said that I would never trade her for a healthy child because that was the way God made her and she was who she was because of... well, who she was! :) God made us ALL fearfully and wonderfully and for his beautiful purposes.

Okay, I'm rambling, but I just wanted to say hello.

A fellow blogger,
Lynnette
Dancing Barefoot on Weathered Ground

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