Thursday, March 29, 2012

Back in Seattle Again

Nothing is wrong.  In fact everything is so goood.  However, Ben is starting kindergarten in the fall so I decided I had better get my head out of the sand and make sure he is ready.  We have continued to have 6 months MRI's and they have all remained clear.  (unless you count the radiation scar!!!!)  We are in Seattle for a visit to the SURVIVOR late effects clinic.   They sat down and helped us make a plan to watch for things like....secondary cancers....bone density problems...neurocognitive problems...growth issues, etc...  It was really basic and based on general cancer survivors from over a decade ago!!!!!  Scary how far behind some of the data is!  In fact the person we were meeting with did not know about the scarring that many proton beam radiation children are seeing on their MRI's.  Just a reminder to me that my job is not over.  I need to keep up with other ATRT children's blogs and other sources to see what may be ahead of Ben. 
I am so very aware of what a miracle Ben's life is.  I am so very aware of the loss of so many other children.  My heart goes out to those families.  Why one makes it and one doesn't I don't know.  I often feel guilty because Ben is alive and doing so well while others are not.  So many emotions that I don't even fully understand...

Next blog:  Neurocog Evaluation!