Monday December 12, 2011

Monday was an unscheduled day at St. Jude's Children's Research Hospital for Team O'Hara but we are hopeful the issues addressed today will lead to a rebound.

Shannon has been just clobbered by nausea, fatigue and - more disturbing - a loss of function to her right side.  What started as face numbness has worked its way down her right arm to her right leg.  When she talks she sounds severely inebriated.  But for most of the day Shannon did not even attempt to talk - she just slept.  We transported her around St. Jude's in a wheelchair.

The rapid progression of the numbnesss - along with a couple days of vomiting - sent us back this morning in 911 mode.  Shannon needed fluids and she needed drugs that she just couldn't keep down on her own.  By about 10:30am she had an IV in place and for the next 6 hours it was a slow drip, drip, drip.  More steroids, more zofran, more zantac and saline. 

Dr. Cynthia Wetmore was all over us today.  Shannon is the first patient in her trial to get this high a dose of the crenolanib.  Her opinion is that one of two things are happening; 1) the tumor is growing or 2) the drug has had an immediate impact and cell death and edema are causing these problems.  The second explanation is not only most hopeful - it seems most logical. 

The MRI taken just last Wednesday did not indicate much change to the tumor and Dr. Wetmore feels that if there is tumor growth it would not happen that fast.  The symptoms would present more gradually.

When Shannon passed the pee test - when she was able to urinate - we were allowed to go home (OK, home is a stretch but back to our apartment home in Germantown.)  That happened about 5pm.  We will head back tomorrow for further monitoring.

By the time we returned to our pad Shannon wanted popcorn and mac and cheese.  We tried to pace her.  But she was hungry.  Now she's sleeping again.  In a chair, wearing a shamrock blanket given to her by the Rochester 12A girls hockey team.  She looks cozy.  If she is sleeping she can't puke.