Thursday, July 4, 2013

Hello? Is anyone out there? – The lonely world of Aplastic Anemia

The Benedryl given to Ryan prior to his ATG treatment knocked him out within 10 minutes, which has left me sitting in this quiet room with my laptop, searching for as much information as I can find on Aplastic Anemia.  I have found some, but overall, there just isn't a vast amount of information out there, and what I can find is mostly redundant.

I was hoping to find tons of stories about people that have beat this, but I have only been able to find a few blogs written by AA patients or their parents.  What I have read from them has given me a good idea of the roller coaster ride we are likely to experience in the days and years to come.

Tonight, I feel like we are so alone.  All of the kids we have met so far at the hemotology/oncology clinic have Leukemia.  The posters on the wall are all for leukemia organizations, sickle cell summer camp, leukemia/lymphoma society, Gilda’s Club, etc.  Not a single aplastic anemia related item in the office.

I wish there were more Aplastic Anemia patient stories online.  Are there stories of successful long-term remission with ATG?  Hello, is anyone out there?

No comments:

Post a Comment