Feb 9th, 2023
The plan ahead is a very straightforward one, and Layla is doing incredibly well. She has completed 32 of 35 radiation sessions and graduates on Tuesday, Valentine's Day to then immediately head to class where I think they are talking about throwing her a little congratulations party.
She's regained almost all of her pre-treatment weight and has "gotten stronger and stronger" at every turn. Her radiation Dr. really likes how she is presenting, lots of spunk/energy/good skin color and the last two times we've all been together with her new Oncologist, who we are working beautifully with, there's been a not so subtle, "see, I told you so :P" from him to her as he is currently the one that sees her every week in person.
The team has revealed now, that at the turn of the New Year, they were VERY worried. The MRI on 1/13 where it called out possible progression was not surprising to them. But it turned out to be a blessing in disguise because her MRI 7-days later was a BEAUTY and gave the radiation team "exactly what we could have hoped for, perfect." That concern, has since turned to encouragement. But the fun thing is, I remind them of the "championship foot," where in high school summer league I broke my foot and an x-ray done about a week later showed it was healing so that just a few days after that, I was able to still played in the State Championship and we won, for the third year in a row. "Wolverine maybe?" That's her DNA through and through.
There are still concerns, but Layla, in typical beast mode fashion, is rallying, almost back to baseline aside from some memory fog. As her brain re-wires, we see her improving but also, she is still having rays fired into that area so no one expects her to be 100% until some time after. The Boston team had a patient of theirs have recurrence recently and actually called upon me to see if i'd be willing to talk to the parents about the available and best looking clinical trials because "he has talked to many of the top principal investigators around the country."
In a follow up email they asked how Layla was doing and I sent them the attached photo and "she looks GREAT!" was the comments back. Kind of cool to have the best of the best look to me to help their patients but even cooler to simply send an image across the country and get somewhat of a clinical evaluation free of charge :). I've also shared with them my recent findings and I also posted those to the parents of the support groups. I've written a "First Ever Gold Standard of Care - 'Because all we ever had was bronze.'" guide for parents and am now helping 11 families do what we've done with the genetic testing, what to target, and drug sensivitity screens. Their Oncologists have no clue about any of it but do now.
So the plan? MRI in two weeks. If we are seeing her respond (shrinking tumors), we will be on to Georgia to continue the trial. If we are seeing even the slightest bit of clear, without a doubt, growth, we will not and will immediately roll to something else. What that is, we're working over the next 7-10 days to determine and get approved so it is ready and we have plans A, B, C, etc. But one thing is for sure, we are NOT doing any of that toxic stuff, kids die from it all the time, and we know it does not work and WHY!
Now, what if everything is same as last MRI, and stable? Tough call, but the likely route is, we head to Georgia, give it two cycles and see what her next MRI, in April, shows and by then, we will have crystal clarity on whether to stay on or roll off. We've only done immunotherapy and low dosage chemo thus far which did clear some lesions, but others grew. So the curiosity is, what about adding radiation for the tri-fecta? "But we won't know if it is the trial or the radiation," was the comment today and I laughed and said, "Who the F cares! We've never had good news so that's a bender of a party!"
We're still at "Mach 10.0," and they are amazed that somehow, several days a week she actually gets up and goes to school. Her new thing is waking up at 5AM and whispering in my ear like a little lizzard tongue, "Daaddddd...I'm done sleeping. I wanna get up."
On the science side, her drug sensitivity report is showing some HIGHLY interesting things her cancer may be sensitive to, things not only not ever thought of but not even tried. We've been giving the wrong things for 15-years so we know what does not work, so a "surprise," maybe there some smoke there and if there is, surely there's fire.
The "cloned mice lab" was able to get good RNA, her fusion is being sequenced, then computer modeling will utilize AI to tell us what is most likely predictive to not only work, but predict toxicity to guide us on how to administer whatever we may need to down the line, so it is safe, doesn't ravage her immune system, and is well tolerated. The not so well tolerated crap didn't do anything for anyone in 15-years, so we're simply not doing it, period.
Once we have that, we'll store it and they are going to compare the predictive medicine, which has shown probability of working so it's not bunk science, to another fusion, slightly different than Layla's, to see if the recommended courses are the same, similar, or totally different. Then, they'll put both into many cloned mice and her tumor type will grow throughout the Spring, and we'll see what happens when comparing the drug sensitivity report, the computer / AI modeling for recommended treatment plans, and what the pre-clinical labs I am in close contact with all shake out to based on that list of recommended drugs. Will it all align? Will it be all over the place? Time will tell.
Thanks for the support. I am nowhere close to getting back to work, but I really don't care. This is simply too important to do anything but...