We’re Done

February 19, 2026

This will be my last post (hopefully).

I’m ready to move on from this chapter. Documenting it helped me survive it. Find humor in it. But continuing to write about it feels like staying in it and I’m ready to move on.

Picking up from Day 8 of my 19-day bid.

The rest of the hospital stay was clinically boring. Which, in leukemia, is a win.

No cytokine storm. No neuro fireworks. No dramatic expansion event. I avoided accidentally super keto’ing myself into oblivion again. I tried to negotiate an early release and failed. Total stay: 19 days. Exactly as advertised.

I handled it better than I expected.

Legos helped. CNBC’s art auctions from 7–9 am on weekends helped. Long walks across the sky bridge helped. Exploring the MDA’s campus helped. Making a new friend helped. Having visitors helped. Bantering with the doctor and APRN helped.

Did It Work?

The team drew blood every 3–4 days to measure CAR-T expansion. Early on, Dr. Jabbour said my cells needed to expand past five to avoid transplant.

What happened was:

• Day 1: 0
• Day 4: 1
• Day 7: 4
• Day 11: 1
• Day 17: Gone

Not exactly an exciting growth curve and even less exciting when you’re told you need to expand past five..

Important nuance: this test only measures CAR-T cells circulating in the blood. It says nothing about what’s happening in the marrow – where leukemia actually lives. The CAR product I received is known for rapid expansion followed by rapid contraction. It’s entirely possible I expanded past five and we simply missed it because we weren’t drawing labs daily.

In the one study I found, expansion above 15 correlated with better relapse-free survival, but worse one-year overall survival, likely due to complications from excessive expansion.

In other words: bigger is better… until it kills you.

I’d be lying if I said I wasn’t discouraged watching those numbers stall out. I’m telling myself “more cells” doesn’t equate to “more safety.”

The MRD Problem

I went into CAR-T NGS/MRD negative.

I was negative after the first cycle of dose-dense chemo. Then we proceeded to try to kill me with another three cycles.

If CAR-T cells expand in response to leukemia cells, and I didn’t have measurable leukemia cells… maybe there just wasn’t much to eat.

One of the Mayo oncologist used this exact logic when declining to do CAR-T there. Their argument: if you don’t have detectable disease, we won’t know if CAR-T is successful.

Fair point Dr. Shah.

But here’s what we do know:

• Day 30 biopsy: NGS/MRD negative
• No detectable B cells

CAR-T wipes out B cells. The absence of B cells tells us something is still active. The CAR cells may not be circulating in my blood, but they appear to be doing their job quietly in the marrow.

Expansion vs. Persistence

Most care about expansion. I care more about persistence.

I don’t need 25 million CAR-T cells floating around. I need a small, durable strike force that sticks around long enough to eliminate any B cells – or worse – leukemia that reemerges.

That’s why I went keto. Not because I wanted fireworks. Because I wanted longevity. I was trying to create an internal environment that favors persistence.

At my Day 30 appointment, Dr. Jabbour was candid: they don’t really know whether my expansion is good or bad. Most patients aren’t MRD negative going in. I’m operating in a smaller data subset. Hence the trial.

The Curve

The relapse curve after CAR-T is steep early and then flattens after one year.

Translation: if relapse happens, it usually happens fast. If you make it one year, your probability of long-term survival increases significantly.

As of today, I have 10.75 months to go.

What’s Next

I was cleared to move back to NWA after Day 30 and returned last week.

For now:

• Monthly trips to MDA
• Then quarterly
• Then annually after two years

I’ll monitor labs locally and receive IVIG infusions as needed. At six months, I restart my childhood vaccines. It will be a bonding experience for Alice and I.

My immune system is still compromised. Platelets are still low though I’m unsure of how low. I’m hoping they’re high enough to get back on my mountain bike.

MDA won’t clear me to return to work until my neutrophils normalize. They warned that usually takes about 90 days. Sometimes longer. Tentatively aiming for early April.

In the meantime, I’m reintegrating life at home.

During treatment, I always felt like a visitor – popping in, contributing selectively, then leaving. Now I’m a permanent resident again. Morning daycare drop-offs. Home projects. Afternoon naps. Evenings with Mary Beth and Alice. It’s nice.

Walking Partner

While inpatient, I posted in MD Anderson’s young adult group looking for a walking partner. A woman responded. We started doing laps across the skybridge every afternoon.

She had recently delivered her second child. A few months of “new mom tired.” Then the ER. Then Acute Myeloid Leukemia.

Our conversations were about treatment plans, insurance, parenting while immunocompromised, and the unenviable position our spouses found themselves in. Just normal 30-something small talk while having chemo cocktails.

On one walk she said: “You never think you’ll find yourself hoping for the good kind of leukemia.”

That line stuck with me and I’ve been thinking about it a lot lately.

I’ve been unlucky in some ways – mutations, relapse timing, risk profile. But zoom out, and I’ve been extraordinarily lucky.

Lucky my mutation isn’t the death sentence it was five years ago.
Lucky my parents could drop everything and move to Houston in a week.
Lucky Mary Beth could carry our family while I disappeared into treatment.
Lucky Alice is too young to remember any of this.
Lucky to have friends, family, and coworkers who showed up – with prayers, blood donations, texts, meals, care packages, and love.
Lucky to have a job that will let me take a LOA.
Lucky to have insurance.
Lucky to qualify for the right trials.
Lucky that, so far, it appears to have worked.

This chapter asked more of us than I thought we had to give. It stripped away comfort, control, and any illusion of certainty. But it also clarified how fragile and valuable ordinary days really are and what’s durable: family, friendship, good doctors, stubborn hope. I wouldn’t choose this path, and hope hope hope I never have to again. I’m still here. The labs are clean. The odds are improving daily. And I’m moving forward with a deeper appreciation for the life in front of me.

Adios amigos.