Gotta admit... that I'm little bit confuuuuused
Sunday Feb 25, 2024
Blogging Tunes: SomaFM - Groove Salad
The length of this update will be inversely proportional to the amount (and complexity) of info we're dealing with here.
The summary: my head is spinning. 🤯
There are at least 5 different treatment options we're considering, and, as much as I was hoping it wasn't the case, it seems the best course may not be local.
Yes, that means I may have to travel for initial treatment. Not going to get into any of the details, but I'm talking to various docs from multiple sites. I'm very lucky to have a ton of connections from my LLS Board service which has expedited these conversations. I spent almost an hour this morning -- yes, Sunday morning -- talking to the Primary Investigator of a promising trial that may be perfectly suited for the specifics of my AML. Incredible that a world-class doctor would spend an hour of his Sunday with me.
Many more conversations to be had and we need to come to a decision by the end of the week, so it's going to be a very busy next several days.
I'm letting you all know in advance that I'm probably not going to be responsive to texts. Thanks to those who have reached out. I love you all. And thanks a ton to everyone who's contributed to Floyd's SVotY LLS Campaign... with your help, he's crushing it!
Speaking of Floyd, he turned 16 the day after my previous post. Happy birthday kid!
Base hit!
On Deck
Encouraging! The fact that you are able to reach these doctors is amazing, there is so much progress done every year on AML and transplants i'm so happy to hear you are getting people all over to work with.
ReplyDeleteOne of my AML-friends, simply could not get into remission so they couldn't get him into BMT, he went on a similar journey, ended up getting one a specific trial plus some additional therapies that got him into remission, he's about 10 years post now doing amazing.
I'm thinking about you daily my friend. I know that you will find the best treatment. My gut feeling is that you will win and kick its ass again. Remember that every scifi trilogy ends with victory! I feel you are just started on "Return of the Jedi" and you will luke the whole thing.