April 1

So much for Gleevec.  I won't go into all the details, but we ended up in the ER last Friday morning with Clay, after a very long Thursday night with him feeling terrible. A CT scan showed he had an elevated intercranial pressure.  But, after several hours hooked up to an IV, an opthamology exam, and an MRI, things looked much better and the swelling had decreased somewhat.  They admitted us for observation overnight to the PICU (Pediatric Intensive Care Unit).  Unfortunately it was a busy day and the only bed left was in a room with 3 other patients.  For those of you lucky enough not to have first hand experience with the ICU, here is the thing: there is no sleeping in the ICU.  The lights do not get turned off, ever.  They monitor your vitals every few hours. And there are lots of noises -- patients, machines beeping, visitors talking, doctors and nurses doing rounds,  tv's blaring.  Clay said to me every hour or so, "It is morning?"  to which I would say, "no, the lights are just still on. It is 2 a.m (3 a.m., 4 a.m., you get the picture).   We were overjoyed when we were discharged 24 hours later.  And the headaches have subsided this past week and Clay is back to his happy self.  So we are again meeting with our doctors and deciding on new next steps.  But we are home and that is wonderful.