Getting nervous

I'm now officially nervous about tomorrow. Tomorrow morning we take Jack back to the cardiologist for his repeat echo to check on his heart tumors. It a matter of if we're going to spend the rest of the week relieved and having fun at home (catching up on cooking and swimming at the gym) or if we're going to be scrambling trying to figure out how to get Afinitor, the new drug the FDA approved for brain tumors in TSC kids, paid for. Because using it for heart tumors is an off label use the insurance won't cover it and we got denied for MDCP (Medically Dependent Children's Program), which is a whole other post to itself and which we are appealing so I'm on the phone with doctors offices constantly as it is, so it would cost about $3000 a month. We are hoping that NORD (National Organization for Rare Diseases) will step in and pick up the tab like they did with the ACTH that cost $60,000. Or was it $80,000.... I don't remember.

Anyways, you may need a degree in TSC to understand that last paragraph and all of the acronyms. Basically, we are praying that his heart tumors have shrunk, or at the very least, not grown anymore. My little man has enough to deal with as it is and this mama does too.