Aug 25th, 2023

The Cancer Revengers fleece blanket is live at, I’m only ordering how many are ordered for now. Also, we had a scare yesterday (false alarm).

Layla, weds afternoon, came home from school. She’s been doing full days, amazingly. But for the first time she took a nap, asleep at 3. At 4:30, she woke and we noticed her gait was wayyyy worse, almost falling over.

Almost took her in to Rady ER right then. But we let her wake up and then we gave dinner (get some calories in), then we did tubby (how refreshing water amazingly is), and then sat her on the couch. Seemed better. So I said maybe need full nights sleep.

So she woke yesterday am and the same, not much improved. I called and they said go to ER. We did labs, nasal swab for full respiratory panel, CT and then MRI. Labs came back slightly anemic, CT normal, and then we did MRI. Nurse came in and said no concerns on any imaging. So we left.

Viral panel came back positive for rhinovirus hours later (again, we had this in July - or was it May? Can’t remember). So between that and anemic, makes sense. Murky middle ear fluid also called out, something new.

Buttttt, we did an MRI remember :) I got to geek out on her MRI and compare to 3 1/2 weeks ago which compared to 5-weeks before that. Everything is at minimum stable, but some smaller in just three weeks and she only had 4 total inthrathekal treatments (mon/thur and then mon/thur) and not even the good stuff…that’s next week, 5 treatments total. We gave her this week completely off from everything to “recoup,” only to get a virus, womp, womp.

Check these images out attached. These are the former “big boys,” there are some smaller that are mostly stable and haven’t shrunk much but we will work on that! Cool to have June 15 to July 31 to August 24 to compare. Median time to response (shrinkage) on this regimen (which we modified to be much less harsh) is 76-days. We showed massive response in half that on July 31 and this is only 59-days in to boot (two full cycles vs 2 2/3’s).

Gonna keep a close eye on her, slightly improved today but the sniffles and tissue box has begun now. Her MRI did note Opacification of left middle ear and air mastoids (murky fluid). That was new on MRI, never seen that one before. Working with the team to get to the bottom of, wait it out, or intervene. Radiation does not want intervention this close to radiation (7-months out now), but patient safety and not falling is big priority.

She should be at Rady every day next week getting the good stuff, so she won’t be in school. Also, we put Seattle off until further notice, on an MRI by MRI basis, so they can get actual patients that need it in (fairness/equitable) and actually see if any results. We wouldn’t go back for some time as of now so it does no one any good to have us have the blood drawn but not be treated. They need early return results on safety and anecdotes on efficacy to advance the trial but also, first several patients don’t get full dose. We will hopefully wait for that or beyond, “hope you never need us,” is their motto.

Be sure to check out the MRI June-July-August images attached and to also check out the blanket and get your order in by Monday if you want one! I will place the order on Monday so they will come to you all 10-15 days after that. The kids LOVE it so if you have multiple kids, trust me, they WILL fight over it so get more than one. Pics below of the blanket and the MRI images are there too but gofundme is weird and cuts them off so follow my Instagram @thebeaconscollective and check my stories. They are there in full.

Thanks again all!

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