12/13/2023 - The CBS8 video above is amazing, but getting here for Layla came at an enormous financial toll and we may soon have to sell the only home she's ever known. She loves her monarch butterfly sanctuary yard, the hummingbird clan, her great white shark wall, her bedroom, her school, her teachers, and classmates, but we have to kill her cancer before it mutates. We have to kill it, by the end of June 2024. In June of 2022, I gave up my entire life, stopped working and have not earned a penny since, to be laser focused and set out to deliver a world first; 18-months later, Layla delivered. For the first time, for her cancer type, ependymoma, we went on the offensive on November 6th, 2023, using actual data, a theoretical roadmap based on her personalized tissue testing, and it worked, things shrank/improved on her MRI on November 30th, 2023. But this all came at an astounding financial loss. Now is not the time to return to work though. We have to finish the job and the only way to do that, is to sell. We'll soon be out of liquid assets, my least favorite human invention of all time, money.
Her cancer remains, but it has once again responded (shrunk). But now we have to deliver again, and this will be the "steep climb out," on a monumental scale, to be the first to ever finish the job. Now is not the time for me to be returning to work, but the realistic only way to do that is to sell the home she grew up in. This is THE dilemma, and we live in what is now officially the most expensive place in the country and Rady Children's San Diego is one of only 4 other locations to offer this new innovative data driven approach, they pioneered it, as not even Boston Children's, MD Anderson, or even St. Jude are in on it. So she has to be here in San Diego with us feeling a sense of almost being trapped and strapped, financially speaking. Moving to a much more affordable part of the country would make so much sense financially, but is not possible medically for what we need to do.
This new treatment is working for Layla, but it causes severe fatigue and weakness. As a result, Layla requires constant care. She a fall risk, requiring a dedicated helper at school, and at home (us), to simply walk 30-ft from the couch to the dinner table, or to get up to go to the bathroom. She is now on a school/home tutor hybrid, but mostly home. We are fighting for this wonderful child, but there are others kids relying on us as well. We always try to bring everyone along with us in everything we do. While fighting for Layla, so publicly and openly, 90 other families with her brain cancer type have reached out to me for help because we have been such pioneers. The work has to continue, for Layla, the kids, and maybe even for everyone reading this. This work may very well help kids, AND adults, 1 of 3 of which, will get cancer. What I have learned for Layla, has saved the lives of 6 other kids, with a 7th looming. I am also working with two adults and monitoring several others.
We have her cancer on the run, and that's where you come in. We need well more than $100,000 just to cover what I need for continuity of the process; to be laser focused, to lead her team, and to finish the job to perhaps reveal the pathway for others. But the potential of this looming liquidation has been stressing me out beyond belief, a complete distraction. Our all-in-all medical out of pocket each year is $30,000 and 2024 is calendar year 4. All tolled, that's 51% of all her total prior funds raised. Her innovative microcurrent/physical therapy and hearing aids (90% hearing loss in left ear), both not covered by insurance, are another $20,000. That's $50,000 we're going to be hit with in the first few months of 2024 before paying a single month's mortgage, car payment, or electrical bill.
Layla was given 3-6 months to live over 18-months ago. And once again, but it is entirely possibly that something else now has less than 6-months to live. If Layla's cancer were standing right here in front of me, I would look at it with the face of a stone cold killer and say, "Hello, my name is not Inigo Montoya, but you tried to kill my daughter, prepare to die."
Today, is the inaugural anniversary of "Mach 10 Layla" day, the day Layla was last discharged from the hospital as an inpatient. She has spent every night since, all 365, where she should be, in her bed, in her home. Please help us make it 365-days more, and beyond. And please, let us complete the steps of changing the course of cancer treatment history, forever.
To all our prior supporters, what you all helped me to to help Layla deliver is historic and the pediatric cancer paradigm shift for Layla's brain cancer type may very well be upon us. Layla became a world first on November 30th, 2023. She has been battling brain cancer since August of 2021 with failed surgeries on August 2nd, 2021 and September 8th, 2021 followed by 33 rounds of radiation, ending November 4th, 2021. In April 2022, after a March 2022 surgery in Boston, MRI showed it was completely resected but just 6-weeks later, on June 6th, 2022, it was back and spread to all parts of her brain and spine, incurable. In total, she has had 4 brain surgeries, has done radiation twice for a total of 68 rounds, did a brutal chemo which nearly killed her and robbed her of hearing in her left ear, 3 clinical trial protocols, has flown around the world the equivalent of twice for trials/surgery/consults, but on November 4th, 2023, we ventured into the wild west.
Last December, from her 4th brain surgery, her freshly resected brain cancer tissue was sent to Seattle, live, within 24-hours and tested in a CLIA certified lab against almost 200 FDA approved drugs which showed what her tissue may, but more importantly, likely would not, respond to. We found that most of her prior treatments were on the bottom 1/3 of the list, or worse. We did not call this theoretical "roadmap" into play as her current treatment (radiation) followed by a clinical trial protocol, was keeping things stable, until 26-days before November 30th, 2023. In just that short time since deploying it, it showed, that the testing and report are may just be valid.
Starting late June 2023, we were giving her drugs 119 and 114 from her list directly into the brain. We saw massive response on MRI in late July, from those new drugs given June 26 to July 31. However, MRI's after showed response stopped and things were stable only. We hit the wall so just a few weeks ago we said, let's move up to #64 but double down on it, give it directly into the brain twice in four weeks, and smash right through it. We did. We started this just 25-days ago. We will continue doing this with this drug and IF we hit a wall, we will go to drug #34 on the list, which we have nicknamed "Big Papi." One may ask, why not go to the top of the list, but that is risky with toxicity and there is little data known about what those drugs do to children and many do not cross the blood brain barrier. We're following the known drugs with known pediatric safety data that are largely thought to cross the blood brain barrier.
The vast majority of people who go through this "fly blind." They pick drugs based on a best guess and hope it works. We have a potential roadmap and a plan. We invite you to support Layla in her fight as we are running out of money. We will do what we have to do, but hus far, we have refused to give this thing an inch. We have refused to change a thing, take anything away, or do anything differently than how we did things since before all this started. What's more is, we never told Layla in June of 2022 that her cancer was back, and we still have not.
Our approach remains unchanged, to keep things unchanged, to not let her notice anything, and your support will keep it that way. Her spirit, has been unbreakable because that's how she is, and in large part because of this. Thank you all for the support to our longest supporters as well as those finding her story for the first time. It's time to finish the job, and shift the paradigm.
"Here's our chance it's a big one Goose." Then we buzz the tower.