Mar 3rd, 2023

Got a text from Layla's Principal last night, "Is Layla coming to school tomorrow? We have the Synergy Gathering and I have her lines." Each class has two Lighthouse Leaders and she is one of two for her class. Layla at 5AM this AM, "Dad, I'm getting ready for school, should I put the dog out?" "No, he's sleeping, I'm sleeping, we're all sleeping...get your butt back in bed ." Runs away with a "teeheeeheee" squeal and seconds later...hear claws on the tile, hear the back slider open...comes back in, turns the light on to get dressed. UGH, so early!

Here she is pictured with the Principal about to recite her lines to the entire school. She went to school for the entire day twice this week, two days staying home for not feeling well as we resumed the Georgia clinical trial and her last day of taking the not so fun low dosage chemo drug that she takes on days 1-5 of the 28-day cycle, is tonight.

The working group resumed their meetings last week. The leader was not on but there was much discussion about some findings in the previous meetings. I listened, and for the first time said it was time to step up, so I chimed in and said, "hey all...a bit awkward here being a parent, not an MD, and being the guy that went to UMass and majored in fun...but, uh...I'm the catalyst for all of this discussion, want me to fill in the blanks?" Looks of shock, but a "yes please do," and a half hour later, lots of looks of shock, hmmm, the words "almost a Eureka moment" are used. I told them that Layla has had more tests, studies, tissue samples cultured and more than very likely any kid on the planet. EVERY kid should have this.

All of the drugs we have been talking about going to once we run out of runway for the current trial, we now have definitive data on if they would work for Layla or not. A resounding no they would not or would work only for a short time. We know, almost for sure, what will NOT work. Do we know what will? We have a hint, but what is the right COMBINATION, what is safe, etc. all unknown. Her testing came back a SHOCKER to the local team, to this group, to the NIH and more.

I told the group, "we've been barking up the wrong tree for 15-years, with all our eggs in one basket and little else was tried during that time, all the while the solutions may be right under our noses. We failed. We are also looking for single drug solutions, and we know those will not work for Layla and those too, would fail immediately or eventually. We have the supporting evidence from her drug sensitivity report, something few hospitals are doing or even know is now very recently available. I posted it to the support groups and not a single other parents Oncologist knows what it is. I literally am trying to compare reports with another parent and I cannot find one. We do need to push for single pill solutions but it'll be a decade. We need to look at combination therapies because the two papers I found where the patient's cancer went away 100%, for a time, it was combination therapy, 2-3 drugs at a time."

After I said this, someone chimed in with, maybe clinical trial X can expand access to ependymoma (Layla's type) because this is exactly what we are doing...testing tissue for drug sensitivity, the results are SHOCKING and stuff we never thought of, and we're trying combination therapies. We are just getting started but it's worth looking at."

So I go and lookup the trial, there are very few hospitals participating. I look at the protocol and say oh my gosh this is EXACTLY what we are doing, so like it or not we're following this trials protocol but unofficially.

And what hospital is participating?

Rady Children's.

And who is the lead investigator at Rady for this trial?

Layla's new Oncologist.

I wondered how she knew to do this. Now I know...

Expand your email list

Join our newsletter.