Mar 13, 2023
In an extremely odd twist, thank goodness Layla had her seizure here on December 3rd and we did not make it back to Boston. Yes, you read that right! If you're a science geek or love cause/effect, if A then Z, twists/turns, etc. this update is for you,

I wrote on Thursday that Layla changed medicine/science forever, without even knowing or trying. Well, the events of the weekend have made that a mucho understatement, but first, the Boston v San Diego thing.

Layla had her drug sensitivity testing done after her December 5 surgery, following her December 3 seizure. If we had gone to Boston for surgery, which we planned to on December 7 for surgery on the 9th, it never would have been done because they are not setup for it yet, it is in the works. I figured every hospital did it, nope, not even close, there's 4 in the USA, it is THAT new. I have been trying to find another parent with the test to compare notes, there aren't any. We're the first for ependymoma. I reached out to the Seattle team to try to get information for other parents. I was given a list of MD/PHD names, so I emailed every single one.

One that emailed me back was basically the guy who created the concept in the first place. We talked at length. As we were, I realized I stumbled upon Yoda. But oddly enough, as we talked he said, "wait, you're the guy that brought us the cartoon, aren't you?" I said, "wait, how do you know about that?" Apparently wonder woman uses it in all her presentations. He then realized, the person we were discussing, was the little girl in the bottom right of the poster. He emailed me after our call saying he was in awe of my commitment and dedication to this. But on our call, I threw out an idea, he said it made TOTAL sense, emailed the working group and within an hour, all were in agreement.

There is a clinical trial for another type of brain cancer that utilizes this drug sensitivity screen. It is costly but we were never given a bill, nor was insurnace, and the only way it is covered otherwise is if part of a clinical trial, which we are not because we are not eligible. So who foot the bill? I have my theory :)

So, while not official, it looks like this new, cutting edge but still experimental clinical trial will open an Arm to ependymoma, allowing for up to 4 approved FDA drugs to be tried in combinations. Remember me saying I am off the single drug/single target train? Looks like Layla busted the door open for other kids. it will still be many months, but it looks to happen.

Over the weekend, Dana Farber's detailed genomic testing cambe back, over 400 genetic targets, wonder woman covered the costs. It revealed something we hadn't seen before, and that Layla's fusion is a direct match for another patients in a paper. It is a very curious one but because that tissue was already sequenced, that allowed the "mice lab" up in L.A. to order the direct fusion to inject into in VIVO models (living organism...cloned mice, humanoid organs) vs. in vitro (think petri dish), and begin growing. They should grow fast so in about 30-45 days it will then be transfered down to UCSD which will then begin testing its own theoretical drug combinations based on AI modeling, but also test the theories of the specialized genomic tumor board.

The funny thing is, a lot of the new players involved, they never knew each other previously. I was invited to the working group one year ago yesterday, and when this all went to hell I started utilizing those relationships, all felt compelled to look after one of their own as if their own, and all have gone WAY over and above, allowing for new players, new collaborations that did not existin before to enter the fold.

I said I was going to write a new standard of care. No one has had this much testing done, had this many resources, or taken this path. I want every kid to get what Layla has and have it be well documented. This is what it is going to take and I am actively rounding up patient parents to open all of this to them. The level we need to take this is way out there but we need to en masse.

What is even interesting is, the research team at UCSD, they gave me "live tissue transfer media," and this (attached) is sitting in our fridge. It is far better than the standard storage paraffin, and even superior to flash frozen tissue, so that should Layla have an emergency and need a procedure of any kind and they are not around, I can have the OR/pathology team preserve her tissue, alive, in this, for the time needed to get it to their lab to grow her cells. But because the Dana Farber testing revealed what it did, and there is ONE patient from another published study/paper, we may not need it at all. But, if she does need to go under for any reason, we will absolutely biopsy and have that go from the Rady OR, right over to UCSD in this transfer media because while the immune system cannot mutate, cancer can, especially when hit with new treatments.

There is so much more going on, but this is the gist. All the while, the little bugger is at school and thriving, "force of nature," her teacher texted me at the end of her week last week.

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