Saturday July 2, 2011

First of all, if Jen kicks the bucket we are so screwed. 

Managing the meds alone would push me to the edge - the new Zofran, the old Zofran, the Phenagren, the Decadron, the pill cutter...etc...etc...etc.  Then there is the managing the rest of us - the pills are kid stuff compared to managing the kid stuff.  And then there's me... let's just say it's a good thing I can cook.

Shannon continues to struggle finding any adrenal chemical to drive thirst or hunger or generate any energy to spark a rally.  Maybe we are making slow progress but it is really slow.  And it's really putting a strain on all of us because it is so frustrating to put a finger on the cause or find any relief.

Over the past four days, we have demanded much consultation with our Mayo radiation/oncology team and they are just as confounded.  We have added a 1mg dosage of the steroid Decadron to see if that will help tame any possible swelling or add some spunk.

This morning started with promise as Shannon asked for and ate half of a banana.  And later a small portion of bagel and a trip to the backyard to watch Erin and Jen tie-dye shirts.  But after settling back onto the sofa she threw up again.  Mainly what came up was liquid but certainly there was not enough nutritional substance processed to fuel a Shannon comeback.  Still, she found some joy in watching the USA Women's World Cup win over Columbia.  There was sparkle in her eyes.  Progress.

But then the sofa monster got her again and she never really rallied for the rest of the day.  Back to the sleepy eyes, lethargic, unresponsive Shannon struggling to find enough energy to even call for help.  Grandma came over for a few hours of relief work and got her to take in some chicken soup and more Gatorade.  (I'm not sure the poor kid will ever be able to drink Gatorade again after this week.)

Tonight we made another call to the on-call radiation/oncology resident and we will meet him at St. Mary's in the morning for another IV infusion to keep us current on fluids.

Maybe tomorrow will bring more promise and less frustration.  Maybe we will get more sparkle and fewer snarls.  Maybe tomorrow we will all stay happy and Shannon will get hungry.  And maybe Matt Capps will be able to close out a win for the Twins...