We got to see Cammie yesterday since they let her come home for the weekend to recover from her procedures last week. She starts chemo this week. It broke our hearts to see her the way she is now when she was just a bouncing happy little girl 2 weeks ago. After being able to talk to Jami face to face and with ever changing info anyway, I finally was able to get more details.

The good new is that the tumor is not actually in her kidney. The good news is that the tumor is not in her spine, but runs along it. The good news is that she does not have brain damage even though her nervous system has been affected. The tumor secretes a hormone which damaged her nervous system so the tumor isn't in her brain. The bad news is that they changed her status from Stage 2 to Stage 3 cancer. The bad new is that chemo is her only hope because the tumor is inoperable due to the fact that it is wrapped around both of her aortas (spelling) and they won't mess with her heart, too dangerous. The bad news is that they don't know exactly what to do with her nervous system after chemo has done its work(pray that it kills the cancer) b/c there are so few cases of this cancer (600-650 in the USA). There are drug therapies, but some are more dangerous than others and some could cause brain damage.

As you can imagine, the hopsital (along with St. Judes, Mayo Clinic etc....) are all involved in this case and are trying to convince the family to let them videotape everything and make this case a a study for future research and use. It's hard to imagine being asked that, Jami also said for days they had all these interns making rounds to see Cammie b/c she was such a 'rare' case that they had to ask the hospital to stop since Cammie is a person, not a specimen. It reminded me of an episode of Grey's Anatomy and all those overzealous interns wanting to see all the best & weird new cases.

This tumor has caused Cammie to regress. She can no longer walk and has little function of her muscles so standing up is also hard. She has a hard time holding her neck up (think of her as an infant) and little control of her eyes and other movements. She has a constant tick/quick little movements. Just keep praying for her and her family.