"Whoa, dude!" at 5AM to the $379 tooth fairy, an interesting call with the NIH & a major network's investigational Exec. Prod. really wants to hear this chemo story. Thanks to all who participated in the tooth fairy! :)
It is not everyday that you can get a lead investigator at the NIH, National Institute of Health say, "hhmmmm that is intriguing." And on a call just now with his colleague the feedback was, "I have never seen a patient with this report and in so much detail!" Lots and lots and lots and lots of people are trying to help Layla. But no one knows what the solutions are because two decades were spent barking up the wrong trees in an antiquated system and a ruthless, antiquated clinical trial design. But we're soon to test the solutions that went un-investigated all the while in mice and hoping this radiation works so we can let her have a break and hopefully just continue on the GA trial. Anything we do uncover, will still be single agent, which only prolongs inevitability. There is no way the FDA will ever approve an 8-year old being given multiple investigational drugs, even if we wasted 20-years, the last 12 chasing things that were known by the powers to be to be not working but running kids through anyway. So along those lines...
In other "breaking news," the executive producer from a major news network's investigational team reached out this AM and really was intrigued by what I have uncovered, who knew what, when they knew it, what they did, what they didn't do, and how in the world something can be known to not be working 6-7 years ago but still have Layla go through it at the end of 2021. The beauty of it all? Many names and their institutions show up on several papers, but one name shows up on all and it is all non-emotion, non-opinion, because it is all documented, most of it publicly but I do have a few things I am not supposed to. But hey, I do, so too bad. If you're going to throw me into the Matrix, I am going to tear whatever down i can.
So we will be talking tomorrow afternoon. :). I know I won't be able to share much until the story airs, and that'll be a while, but that's fine because it will be national assuming they take it. Layla, and so many kids that unknowingly went into these trials full of empty hope, with no hope of it working, with so many now dead, deserve a legacy.
It is not everyday that you can get a lead investigator at the NIH, National Institute of Health say, "hhmmmm that is intriguing." And on a call just now with his colleague the feedback was, "I have never seen a patient with this report and in so much detail!" Lots and lots and lots and lots of people are trying to help Layla. But no one knows what the solutions are because two decades were spent barking up the wrong trees in an antiquated system and a ruthless, antiquated clinical trial design. But we're soon to test the solutions that went un-investigated all the while in mice and hoping this radiation works so we can let her have a break and hopefully just continue on the GA trial. Anything we do uncover, will still be single agent, which only prolongs inevitability. There is no way the FDA will ever approve an 8-year old being given multiple investigational drugs, even if we wasted 20-years, the last 12 chasing things that were known by the powers to be to be not working but running kids through anyway. So along those lines...
In other "breaking news," the executive producer from a major news network's investigational team reached out this AM and really was intrigued by what I have uncovered, who knew what, when they knew it, what they did, what they didn't do, and how in the world something can be known to not be working 6-7 years ago but still have Layla go through it at the end of 2021. The beauty of it all? Many names and their institutions show up on several papers, but one name shows up on all and it is all non-emotion, non-opinion, because it is all documented, most of it publicly but I do have a few things I am not supposed to. But hey, I do, so too bad. If you're going to throw me into the Matrix, I am going to tear whatever down i can.
So we will be talking tomorrow afternoon. :). I know I won't be able to share much until the story airs, and that'll be a while, but that's fine because it will be national assuming they take it. Layla, and so many kids that unknowingly went into these trials full of empty hope, with no hope of it working, with so many now dead, deserve a legacy.