June 25, 2012

Thanks for calling and e-mailing and praying for good results.  We met with Clay's doctor this week and while the tumor seems stable in size, it is "enhancing" more, which usually points to growth activity.  So not the news we were hoping for.  Further, the problem in Clay's spine caused by back up of fluid has gotten worse.  We are considering entering a clinical trial being run out of Pittsburgh that uses a new approach -- a peptide vaccine, matched to glioma associated antigens that are evident in some people with brain tumors. Clay tested positive for these factors, so we are in the process of getting all of his records sent to determine final eligibility.  If you are interested, here is some more information: http://journals.lww.com/oncology-times/Fulltext/2012/05250/Glioma__Pilot_Trial_Shows_Peptide_Vaccine_Active.7.aspx


We are also consulting with several neurosurgeons to determine if and when we should do surgery to remove the bubble of fluid in Clay's spine that is now causing him balance and coordination problems.  Like all the decisions were are forced to make, this is a difficult one due to the risks involved in spinal cord surgery.

JD is going to Toronto this week to participate in the International Symposium of Pediatric Oncology. The lead doctor on the Pittsburgh clinical trial will be there, as will most of the leaders in this field.  

Clay finished out his Kindergarten year of school with a musical and a fun filled last week.  Each child was awarded a certificate that highlighted what others in the class felt were their most obvious skills: funny, pretty dresses, strong, good at puzzles.  Clay's teacher broke into tears when she handed Clay his certificate and read his strength: COURAGE.  So much to ask for.

Mary