We found THE GUY – the doctor worldwide who we need to see is… at UCLA, 20 minutes away. Which is a godsend. He’s the kind of guy you can’t get in to see. Some of the good karma we’ve put in the world has paid off. We’re seeing him tomorrow – thank you Disney, Lenna (and Joe), Cathie and Phil, and Jim for pulling the strings. (We pummeled this guy yesterday.) He doesn’t even have office hours tomorrow, but he’s coming in to see us. This is huge. Whatever the final diagnosis is, this is the guy who can make it.
**Please note, I now know there are a few “The Guys” and “The Girls”, but this is our guy, and he’s close. Again, if you have AA get to a specialist. The NIH is also a great place to go. -Written now
If it is Aplastic Anemia, it is diagnosed roughly 600 times a year. That’s how rare it is, so most hematologists will never have seen it before. One of the only people who sees it regularly is this guy. People travel to LA to be with Ron Paquette through treatment.
Another stroke of luck, if it ends up being AA, an executive at Disney’s 20 year old daughter was diagnosed last year, and is under treatment with Paquette. She emailed him directly with me cc’d. And she is holding our hands and walking us through this step by step. Thank you to Nancy for making that happen.
We should all be prepared to not be fooled by anemia in the name. We would have preferred leukemia. And we will be treated in the oncology ward, by an oncologist. The treatment is a version of chemo. So, while this is technically not cancer, it is basically a cancer diagnosis without anyone doing any three day walks for us.
We are still holding on to hope for the one click smaller syndrome, but either way, getting to Paquette is huge. We are where we need to be.
More tomorrow. Send her love. And don’t forward her this email. She’s getting there are her own speed in her own head. The speed with which Paquette is already moving is freaking her out, but it is the right thing. We need to get her in treatment.