June 8, 2012
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Teeny-Tiny-Eensie-Weensie Update
Posted by Stephanie 11:00pm CST from a hotel Little Rock, AR
Lots, I mean LOTS has happened in the last week. I’ve been working on another of my always-lengthy blog posts for the past couple of days when I’ve had a few minutes of free time here or there, but I’ve come to the end of yet another day, and honestly, I’m just too wiped to finish it out! But, I wanted to let those of you who might be out of the loop (or not on Facebook) in on the major points, and I’ll get the lengthier post on here as soon as I’m able.
So, here we go, the super-brief Reader’s Digest version:
1. Insurance denied coverage of the Pazopanib, because it’s FDA approved specifically for metastatic soft-tissue sarcomas, which I don’t have. This makes me want to curse. A lot. The hospital is appealing the decision.
2. In the meantime, we have decided to have the prescription filled and pay for it out-of-pocket so that I don’t have to wait any longer to get started on it (it’s already been a week and a half since my appointment with him!).
3. The kicker? The medication is approximately $6200 a month. Yeesh.
4. After many phone calls and much confusion, I was given the green light to leave Houston. Mom and I packed up and got on the road this morning, and are stopped in Little Rock for the night. Eleven hours in the car tomorrow and I’ll be home!
5. An unbelievable number of people are rallying around Sammy and I after last week’s scan results and denial of prescription coverage. In the last few days, we’ve learned of so many accounts, events and fundraisers being planned by our community of friends, family and supporters. I’ll have a run down of them all in my next post so that everyone is in the know!
6. I’ve got a new addition to my alternative therapy regimen. What is it, you ask? You’ll just have to wait for my long post to find out! I know, I know, I’m evil for keeping it secret.
There ya go. A lot of info, and yet not a lot, all at the same time. The lengthy post that’s coming will fill in all the blanks, I promise. Right now, it’s bedtime. Gotta get my beauty sleep (ha!) so I’m prepared for the rest of our travels!
-Steph
