GIMME THE SUPER CELLS

January 3, 2026

Cycle 4

Sorry for the lack of updates — I was beat up for a bit and just wasn’t feeling it.

Here’s where we’re at: I completed cycle 4. If you’ve been following the hospital floor differences, you’ll appreciate the nuance: Floor 20 swabbed my butthole. Floor 19 didn’t. Floor 16 gave me the privilege of swabbing it myself, in privacy. A choose-your-own-adventure level of dignity. No walking rewards like M&Ms, but no fall risk wristbands. A true compromise.

My inpatient stay was pretty uneventful. It was a B cycle, and like the last one, I needed a ton of platelets – five transfusions over six days. At one point I had two platelets, and my gums bled for hours. It was terrible in the moment, but par for the course at this point. Another day, another something bleeding.

Ino for the Road

Before I headed back to Arkansas for a short break, Dr. Jabbour took a look at my labs: ANC was strong, platelets surging (75). He tossed me a parting gift – one last dose of Inotuzumab.

I thought: “Sure. My counts look great. One more hit of Ino. I’ll see you in a week to start cycle 5”

Wrong.

The bonus dose – paired with a fever that landed me in the ER at Mercy – wrecked me.

Ino crushed my platelets, and the cold wrecked my neutrophils. Every week I went to Highlands for labs, and every week, things got worse. I did two courses of Zarxio, which worked great for neutrophils this time — but then my platelets were too low. It felt like squeezing a balloon: you fix one thing and another pops out. I’d have platelets over 50 but no neutrophils, or neutrophils over 1 and platelets in the 30s. Meanwhile, I felt like trash the whole time while incurring longer and longer delays.

Why Are We Still Doing This?

I’m the proud owner of a super mutation, IKZF1, that’s chemo-resistant. Inotuzumab works well against it, but the dose-dense trial only includes Ino in the first four cycles. Cycles 5 and 6 are just more chemo (which doesn’t work) and Blina (which I haven’t looked into — Jabbour told me to focus on his Ino trial data).

Time for maths: if 50% of the next two cycles is ineffective, and we already accomplished the goal (NGS- and MRD-negativity)… why are we still playing this game?

My marrow’s tired. I’m tired. Let’s stop dragging this out and move to the solution: CAR-T.

Four weeks of delays and blood count chaos later, I get a call from Jabbour.

The call is short. Direct. Efficient.

“We’re done with Ino. We’ll do one more cycle, then we’re moving to CAR-T.”

I asked if skipping part of the protocol changes survival odds. He said no.

Honestly, I didn’t even press him on the logic of still doing Cycle 5. I was just relieved to hear someone say: “We’re almost done.”

New Plan

Of course, I got delayed again – another two weeks waiting for counts to recover. This week, platelets were 49, ANC was 0.5. Still too low for admission. But I drove down to MDA anyway to have a nasty rash under my PICC bandage looked at and try to negotiate my way into starting cycle 5. I was tired of waiting.

My mom came with me. Jabbour walked into the room and said, “You’re done with the dose-dense trial. We’re starting CAR-T.”

It felt like the heavens opened and sunlight hit my face. Doves may or may not have flown through the window. Finally done getting blasted with chemo.

Once again, he told me this doesn’t change the survival outlook. The dose-dense trial’s goal was to get me to NGS- and MRD-negative — and I’ve been both since cycle 1. For someone my age, with my duration of remission, and who’s NGS/MRD-negative, there’s no added benefit from transplant. CAR-T is the move.

SIGN. ME. UP.

I was ready to start that day, but he told me we’d need to wait another week for the super cells to arrive and thaw. Throw that shit in the microwave and lets goooo.

Here’s the Plan

I’ll drive to Houston Monday and start pre-treatment testing Tuesday. Basically the same stuff Mayo ran:

• Liver ultrasound — shoutout to Craig, my liver. He’s been living clean and seems to be holding up fine through all the chemo and Ino.
• Spine MRI — to recheck the T12 maybe a lesion maybe not a lesion Mayo found. I still have pain there, but Gemini (I quit ChatGPT – it lies) says if it were leukemia, it would’ve progressed by now. I’d be having leg issues and/or wetting myself. So far, legs work and I haven’t peed myself.
• Heart workup
• Another bone marrow biopsy

Assuming all that comes back clear, I get admitted Thursday to start conditioning — three days of chemo to make space for the new cells, one day of rest, and then on January 13, I get my supercharged, genetically engineered, leukemia-killing, CAR-T cells.

They’ll keep me inpatient for about 19 days. I’m not sure if it’s over confidence or the little white pill I take each night, but I’m not that worried about CAR-T. I haven’t done a deep dive into it because what’s the point? I have to do it either way. Some people get fevers. Some end up in the ICU with neurotoxicity. But no one’s really brought up death as a risk, so I’m assuming that means it’s rare.

What I am Worried About

Nineteen days is a long stay. Last time I did 21 days – back in June 2020 – I went crazy around day 14. I get irritable and stir-crazy fast.

I’m bringing Legos. My Sam’s finance team, in-laws, and parents all gifted me sets. Hopefully those keep me entertained for at least a week. I’m also assuming I won’t be tethered to an IV pole the whole time and can sneak off the floor for a bit. Plus, I’ll be back on floor 19 – chasing M&Ms.

Legos, wandering the med center, and M&Ms will buy me some time but please let me know if there are any good books or series you’ve watched lately.

The Running Tally

Sorry if I’ve left someone off. I thought I could remember, but turns out my memory is trash.

• Red blood cells consumed: 1
• Red blood cells donated (on my behalf): 39, +5 from the last update thanks to Justin x2, Therese, Cashion x2
  • I dropped the ball on this one and there are more people I’m forgetting since it’s been so long since my last update (Sorry)
• Platelets consumed: 16, +5
• Platelets donated: 1,