June 27th, 2023
Video update on Layla attached/written below. Please visit www.cancerrevengers.com to help launch this brand into a FORCE! We have summer hats (10 styles), t-shirts, bracelets, and more to help Layla, and other kids, continue her fight. If you want to contribute but wouldn’t really wear any of it, then click on “Become A Revenger” and you can donate one to a kid battling cancer, and there is also this gofundme page. We’re working with the Four Seasons to hook the kids in their Summer Cancer camps up with the donated gear along with Boston and Rady Children’s for all gifts under Become A Revenger.
Layla is doing well. Her new treatment is super well tolerated, there isn’t really anything I see in there that could harm her or make her sick. She perked up almost immediately to it when we started on Friday. Last night, she didn’t go to sleep until 8PM, and hasn’t been like this since March. So it is good to see. We have lost a little ground with her memory/speech function but nothing major, she sometimes calls the dog a cat and vice versa.
Last November, we took Layla to UCSF for a clinical trial I liked. We couldn’t enroll because her platelets were low. The Dr. there said, “Shawn, sometimes things happen for a reason.’ She was really worried that if Layla was to enroll, and something were to happen, she’d be kicked off the trial and it’s off the table forever. So we opted to go to Boston Dec 7 for Dec 9 surgery, we didn’t make it. She had her seizure on Dec 3, and surgery here in San Diego Dec 5. This too, turned out to be a blessing in disguise and I only TRULY realized why, on Friday. Also, her tissue was sent to Seattle for the drug sensitivity test after her surgery.
We then did radiation and resumed the clinical trial in Feb as you all know. Layla was supposed to go to Atlanta for the monthly check in on June 18. But we decided to push it back because we were checking her cerebral spinal fluid (CSF), which carried the cancer around her brain and spine, on the 20th to see if cancer cells still remained, and if so, we may want to switch up the treatment. Going into the weekend, her platelets were low so we figured they may need time to come up to start anyway, no big deal. On Monday the 19th, I took her locally for a STAT lab draw and usually that results within hours. If the platelets were good, I was going to resume the cycle. 4PM, 5PM goes by and nothing back, and we give the drugs at night before bed. So I said, waiting a day, no big deal.
Results came in the next day, Tuesday, at 5:55AM and platelets were good. I said we’d resume that night. But as we were preparing to take Layla In shortly thereafter for her CSF draw, she threw up. She also threw up Sunday, so something was up, plus we noticed a slight head tilt. We went in, told the team what was up and there was a scramble. We did a quick CT to compare to the MRI done just 5-days before and nothing concerning but all thinking the minor difference called out on MRI is the cancer growing, however slight. At this point, we said wait for Thursday’s results to decide what to do. But the next day, Weds, I sent an email to the team saying let’s change it up because no one expected the CSF to be clear. Sure enough, in typical Layla move the goal post fashion, it did come back clear, cancer cells completely neutralized in the CSF. This got me thinking, Layla’s most concerning lesion last summer by her brainstem completely resolved and never came back, and now this. So do we go to Atlanta, or change it up?
Thursday night Layla’s mom came to me and said your instincts are always right, what do you think? I said we’re changing it up. So in Friday they went for her first infusion to get a head start on this week. She perked up almost right away! But right as she was in there getting infused, something hit my inbox that I have been after, after being told over and over it was not possible.
I had thought that all hospitals could do the Seattle drug sensitivity test. I was dead wrong. Not even Boston is doing it yet. Only Rady San Diego and USCF are. And I had thought that Layla was the only ever kid with her type to have it done. I was wrong, there were 3 others. The team seemed super interested in Layla, and because of that I pushed to get my hands on the other 3 patient’s data, not personal info, just their data to compare with Layla’s. I wanted their treatment plan, type, sub type, genetic mutations of note, etc., etc. These drugs, over 200 of them, are FDA approved but some very harsh and not tested in kids yet. I got everything except the treatment plans and was replying saying I needed those. But as I looked at the data, I realized I didn’t need to see it. Those kids had no chance.
The testing is all about sensitivity to each drug, and you want sensitivity to be above 95%. One kid had none above 95%, another kid had one, and the kid with the most, had three.
Layla has 31.
I said all along, you have to follow the science. But you also have to follow the signs. I also said, almost two years ago now, that I was going to have to gut instinct the hell out of this, that I was going to have to push her to the brink, and she can take it, and I also said that I would take 50% of that kid over 100% of any other kid (I’ll pull that one back)
I also along the way said, I wonder if the solutions are right under our noses and we’ve been barking up all the wrong trees. A lot of the MD’s have commented about Layla’s fusion, about the data out there is that it’s the rarest of the rare and super nasty. I have recently said that I wonder if it is not so impressive given the fact that the most concerning lesion went away and never came back last summer, on a trial that no one said to do but I did it on a gut call, and the fact that the very same trial may have complimented radiation to assist in completely eliminating the cancer cells in her CSF, and then you have the 31? This is evidence.
Does Layla have 31 drugs that can help her? No, I wrote previously about how space is not the final frontier, it is the blood brain barrier. There is a handful or two of drugs that can cross over and help her, and we are wondering if any can be delivered directly into the brain intrathecally, which we are doing with her current regimen right now as it doesn’t hit/harm the organs. She’d also be one of the first to get them clinically as a child, the canary in the coal mine, no thanks. So we won’t run to this, and hopefully never do, but it is nice to know that, should it come to it, we have an Alamo.
This thing has misbehaved slightly, so we are going to give it a light slap. But if it misbehaves more, we will ratchet it up. The plan for now is focus on quality of life, and have her roll off the highest quality of life trial, to a high quality of life customized plan and deploy additional countermeasures, only as needed. She will have a minimum of ten 2-3 hour appointments per month. But we can work with that, especially with what we are seeing.
“There is always hope,” Wonder Woman, the leader of the working group, back in Boston, said to me right around this time last year. We started the Georgia trial on June 26th, 2022, and lasted until June 25th, 2023. We started her new course, one year to the day as the Georgia trial, June 26th, 2023.
Thanks for the support as ALWAYS and PLEASE, help us promote www.cancerrevengers.com! We are offering 20% off purchases over $100 until July 4th with code “freelayla”