Relapse

June 14, 2025 Bryce

It’s been four years since my last post. Following that post, I returned to work, made it through maintenance mostly unscathed, had a surprise baby, got promoted, and figured life would keep moving onward and upward. I had hoped to never revive the blog, but here I am.

What Happened Was

This winter, I started getting weird results on my bloodwork. Each CBC would have something a little wonky — one would have a low neutrophil count; the next would be fine but with low hemoglobin. Each result was somewhat explainable due to iron deficiency or fighting off an illness or whatever, but it was the first time my counts started deviating from normal after completing maintenance.

Three weeks ago, we went to a pool party for Memorial Day. I felt off. It took all of my energy to get through the party when normally I’d be having a blast. When we got home, I told MB that she needed to care for Alice the remainder of the night and I hopped into bed — where I stayed for three days. My fever spiked to 103.7 Monday night and dropped a degree each subsequent night. I was out of commission for days. Once the fever broke, I developed what we thought was double pink eye, which then led to an ear infection.

Walmart pays for doctorondemand, super convenient and no copay. The downside is you’re describing your symptoms to someone via facetime and they can’t really examine you. The first doctor gave me eye drops. The second doctor suspected a sinus infection and prescribed antibiotics and nasal spray. Several days passed and my symptoms were mostly resolved but not completely. The third doctor said I needed to see a doctor in real life. In hindsight, it’s eerily similar to when I first got sick and kept going to the doctor trying to get help for the infection on my forehead that wouldn’t go away.

Post fever, pink eye, ear infection, whatever, I felt mostly better but weak. Little things would register and flash me back to the first time I was sick. I was kinda pale. Holding Alice took a bit more effort, but she’s a growing little baby. We went to the farmers market in Fayetteville, and I got winded pushing her stroller up the hill; damn that baby getting big. Like last time, I chalked up some of my symptoms to life, being sick, and not eating for a few days. Unlike last time, I had a routine 3-month checkup with my oncologist.

I stayed home to watch Alice on Tuesday; that big ol baby that’s hard as hell to roll up a hill had a nasty case of diarrhea and diaper rash. I debated moving the appointment to stay with Alice but also knew I needed reassurance, like so many other times where my anxiety build, labs come back fine, and my symptoms magically disappear. Though this time felt a little different.

At the appointment, after some small talk about Highlands getting hacked over the weekend, the good Dr. Lockwood said I was anemic – not deathly anemic like the first time but a meaningful deviation from normal. I was also neutropenic, with an ANC of 1.0. Not deathly neutropenic but neutropenic enough to catch something and it might mess me up real good. I’d been dealing with wonky counts, but this was the first time both were off without an explanation. He scheduled a bone marrow biopsy for the next morning.

Thursday afternoon, the call from Highlands’ scheduler came. Lockwood wanted to see me the next morning – not a good sign. I then noticed a text from Lockwood stating that the leukemia was back and we’d discuss in the morning.

I kinda knew it from the labs and symptoms but was holding out hope it was a vitamin deficiency as chatGPT had predicted with 80% certainty. AI is going to take our jobs but it can’t predict that I have relapsed leukemia with a shit CBC and history of leukemia; talk about missing an absolute layup.

The biopsy showed my marrow is 54% leukemia as of Wednesday, June 11th. Each day it will get worse. Last time around I was at like 93%-98% disease (cant totally recall) and allegedly a few weeks away from dying without intervention. I don’t know how fast it grows from 54% to 90%+ but so far I feel much better this time compared to last and wonder how long I would have toughed it out before requesting labs. Still, I’m crushing Peloton rides and pushed that chubby baby 3 miles today with Ross, Stassi, and Bubs this morning.

What’s Next

Lockwood referred me to MD Anderson. I went there for second opinion during my first rodeo with leukemia and realized they were treating with the future, and my treatment at UAMS was mostly standard protocol. I’m not knocking UAMS. My hematologist was great – he offered creative treatment options that others might not have considered. But he didn’t have access to the future. MDA is literally creating the future of ALL treatment. I’ve always told myself: if I ever relapse, I’m dropping everything and heading back to MDA. That’s what we’re doing.

We expect the call on Monday to confirm an appointment for Tuesday. I likely won’t return to NWA for a while – we won’t now for sure until with meet with MDA. It’s going to be complicated balancing life between Houston and home. For now, the tentative plan is for me to stay in Houston while Mary Beth holds down the fort with Alice to keep some stability. Also, being around a 14 month old while immunocompromised isn’t ideal if you’re trying to maximize odds of survival, which I am. My parents will keep me company as needed in Houston.

In some ways, I’m lucky — getting into MDA, seeing one of the best leukemia doctors in the US, possibly world (literally #2 per GPT). ChatGPT may have whiffed on my diagnosis, but it suggests that going to MDA boosts my survival odds estimate by 10-15%. Next week, I’ll sit down with one of the top hematologists on the planet and map out a plan to survive (shout out to Walmart’s insurance).

Thoughts

I spent yesterday copying old posts from the waybackmachine that catalogs the internet and reposting them here. Reading through those old posts, I was surprised at how much trauma I had forgotten. I assume it’s similar to how women forget the trauma of childbirth and go on to have more children.

Last time felt like a sick but interesting, pandemic game: things were bad, but there was always a fallback — transplant. I always knew there things could get worse and there was a plan B. This time, we’re already on the fallback plan and that’s a different level of terrifying. It feels more serious now, and I don’t want to play this stupid game. That said, the science has advanced a lot in just 5 years. A relapse isn’t the death sentence it once was – that’s what I’m telling myself, and what chatGPT is hyping up. Interestingly, according to GPT, thanks to treatment advancements and a few other factors, my odds of survival after relapse may be greater than the original 50/50 coin flip I was presented with five years ago, but it also thought I had a B12 deficiency.

That’s all great, but here’s where I’m at. I feel like a lot of things went right the first time I went through treatment, and at what point do you use up all of your “go rights”? I’m on this pendulum swinging back and forth between “it’ll be okay” and “the world is ending.” And on those “world is ending” apexes, I have mini breakdowns. I’m terrified, and I’m sad. I’m terrified about all the things that have to go right. I’m terrified about the price I’m going to have to pay for things to go right. I’m terrified of the price Mary Beth, Alice, and my family are going to have to pay for things to go right. I’m not talking about the financial price; I mean the emotional price. I’m supposed to leave for some unknown amount of time, and I’m scared to be around Alice because she has a cough and runny nose, and I’m neutropenic. Feeling like a shit father because I’m afraid of my child. Feeling like a shit husband because Mary Beth is having to do the bulk of the parenting. That’s the price I’m talking about.

I’m sad about all I’m going to miss with Alice — first steps, the giggles, the sly smiles, her pretending to give me food and then eating it and smiling at me, and whatever skills babies learn between 14 and 20 months of life. I’m sad I’m going to be away. I’m sad about the disruption to other people’s lives this is going to cause, but also incredibly grateful that they’re willing to allow me to disrupt them. I’m sad that this may all be for nothing, but we have to try, and we’re doing everything possible to get as many “go rights” as we can.

How You Can Help

I don’t know.

Directly – I’ll be fine. My biggest concern (besides dying) is MB living the single parent life. She hasn’t expressed this, and these are my personal thoughts, but for me, the thought of being responsible for Alice 24/7 for potentially months feels incredibly overwhelming. Anything you can provide that may alleviate some of that pressure/responsibility will be helpful. We had some friends drop by for dinner tonight, and they graciously offered to provide premade meals for Alice while I’m away. It’s something I never would have considered, but it alleviates the burden of figuring out what’s for dinner after a long day of work. I only mention that as an example because I wouldn’t have thought about it, but once they shared it, it was like that first gulp of a cold beer after work where your shoulders just relax – you know the feeling.

Indirectly – donate blood, donate platelets, and sign up for be the match. If I end up getting a transplant, which is the likely outcome, maybe we can become siblings or twins or whatever someone becomes when they assume the immune system of another.