I’m feeling less than creative this Monday morning, so I’m going with a somewhat meta title. (D’oh! it’s now changed)
Following up on last post: we’ve received word that Scarlett won’t be in the drug trial. It’s close to completion and all spots were filled. I actually found out about 10 days ago but needed some time to sort out my thoughts/emotions before posting. As always, some time in the mountains and a few long drives were very good for me.
If you know me, you know I always find the upside/silver lining, so here it is. Even though the trial was closed, the folks at NIH were kind enough to look at Scarlett’s scans and records very closely. They determined the drug could potentially and significantly help her (average tumor reduction in the study to date was approximately 31%). So, they suggested we apply for access to the drug via a compassionate care exception. They put together a huge packet for us and I’ve spent the last week working with Scarlett’s docs to figure out how to coordinate the application. It’s up to the drug company whether to approve it and then I’ll likely have to battle the insurance company. Thank goodness I took health care law in law school. Haha; see what I did there? Found a silver lining despite my hatred of law school 😉
So, I suppose I’m still hopeful that we might have access to the meds without the NIH trial. This seems silly in the grand scope of things, but I’m a bit bummed Scarlett won’t get to see D.C. (NIH is in Maryland so I’d hoped for a few days away from hospitals to show her the Capital, etc.). I feel strongly about reminding my kids how truly extraordinary our country can be, and to me, D.C. is so inspiring. Many of you know that I value travel far more than things, and travel has been great therapy for my family. I’ve also tried to teach my kids that having something to look forward to often makes things a bit more bearable in the present. In any case, travel is up in the air for now. (My puns are so bad that I crack myself up).
Wow, sorry about that – I got way off track there with the travel tangent. Not the first time.
So, that’s where we are. Scarlett is feeling great and the kids are enjoying their summer. We try to up the playfulness a bit more in summer. Last night, we dyed the bottom of her hair flaming red (as she says: “the color is not just red, it’s Scarlet Red”). I’m trying to spend more time in sunshine, lakes, and lovely gardens. Simple pleasures. Which reminds me, thanks to all of you who keep me laughing. It’s truly the greatest gift and you can’t imagine what it means to me.
So much love,
Shan
This is going to be my motivation when I have to argue with insurance companies
😂< img src=”https://scarlettscott.com/wp-content/uploads/2017/07/img_3964.jpg”>