Tuesday December 13, 2011

Another long day of drip, drip, drip at St. Jude's. More iv fluids, and more steroids given intravenously as well. While the nausea medicines have kept Shannon from getting sick, they have made her very lethargic. It is an inexact science, a bit of trial and error to get the right cocktail that keeps you from throwing up, but doesn't knock you out. Let's say that's a work in progress...

The steroids needed to be increased as well today because Shannon's right side is still not functioning. She can't use her right arm or get her right leg to work properly. It's almost unimaginable that she was skating 9 days ago. Now, she needs a wheelchair.

It is likely there is much swelling around the tumor and probably bleeding as well that is irritating the brain. So today, Shannon received 12 mg of Decadron - twice the highest dose she had ever needed in the past. Just like that.

One bright spot today was Dan and Erin taking a break from the Medicine Room at St. Jude's to take Sunny out for a walk on Mud Island - a great park area in the Mississippi River, just minutes from St. Jude. Dan and Erin walked and talked and enjoyed some sweets afterwards at little shop called Miss Cordelia's.

We will reassess again tomorrow at St. Jude with Dr. Wetmore. The goal is to keep Shannon on this high dose of Crenolanib because that gives us the best chance to kill tumor cells. But, Dr. Wetmore is prepared to back off the dosage if Shannon just cannot tolerate it.

It's hard not to feel like we've gone backwards. Looking at Shannon lying in a hospital bed just tears at our hearts. But, we are trying to keep the faith that the chemo is killing the tumor. Things have gotten much worse, but that doesn't mean it can't get better again. We could live with Shannon feeling really crappy for a while if there's a return on the other end. We have to believe ...