Appointments, Tests, and Anxiety

June 26, 2025 Bryce

MDA Appointments and Tests

Tuesday started at 7 AM with an echo, lab work, EKG, a meeting with Dr. Jabbour, PICC line insertion, X-ray, liver ultrasound—and ended with me getting admitted and starting chemo that evening. It was a full day. We walked all over the hospital… and I mean all over. We didn’t eat lunch until 3 PM.

Cancer tip: pack snacks.

Overall, everything at MDA is superior to my experience at UAMS and Washington Regional. I’m not knocking UAMS – they were decent. Washington Regional was pretty bad though. But it’s like comparing the 1995–96 Chicago Bulls to Razorback basketball: not the same league.

The PICC line insertion? WAY better than my first experience at UAMS. It was more professional, cleaner, and – critically- it didn’t go up my neck twice like last time. My heart fluttered a bit during the procedure, and instead of laughing it off like they did at UAMS, the nurse paused, checked my rhythm, and made sure everything normalized before proceeding.

Liver Concerns

My biggest worry heading into Tuesday was my liver- Craig, if you’ve been following. As I said in my last post, I haven’t been the best steward of Craig. He’s had a rough time: years of chemo, toxins, and let’s be honest, a fat, sugary diet. The liver’s important for chemo in general, but especially for the new immunotherapy drug Inotuzumab, which Dr. Jabbour described as an F-16 that blows up CD22+ cells. Unfortunately, it can also blow up your liver.

The trial I’m in is in Phase II and on its third iteration. In the first version, they combined mini-CVD chemo with Inotuzumab. Nine patients developed liver complications and died. The second iteration adjusted the protocol: they reduced the Ino dosage, added a liver protector called Ursodiol, and introduced Blinatumomab for four cycles to give the liver time to heal before transplant. Only one patient died.

From what I understand, most of the fatalities were due to patients finishing therapy with weakened livers, proceeding to transplant, and then dying from complications. According to the latest published update in November 2024, none of the 22 patients treated with the current “dose dense” iteration have died from liver issues. That gave me some peace of mind.

Still, liver anxiety is real – but the doctor on the floor said the ultrasound looked fine and they have no concerns about Craig for now.

Dr. Jabbour & Trial Outcomes

The highlight of Tuesday was meeting again with Dr. Jabbour. He walked me through the projected outcomes from the current dose-dense protocol:

• Remission – 95%
  This stat is kind of meaningless. Remission just means fewer than 5% blasts in the marrow, a definition from lite the 50’s microscopes were the superior technology. What you really want is zero.
• MRD Negative – 82%
  Minimum residual disease status matters most. They test down to the million-cell level. If you hit MRD negative, outcomes dramatically improve.
• 3-Year Survival – 75%
  It’s unclear if this stat includes CAR-T, but I’m guessing it does.

These are phenomenal numbers for a relapse. Ten years ago, the five-year survival rate for relapse was around 10%.

Queue Overconfidence.

I left Dr. Jabbour’s office feeling genuinely hopeful. Assuming Craig can hang in there, everything seemed manageable – even a little too easy.

Then Reality Hit

That night around 10 PM, I got a MyChart alert. My sequencing results had come back – and with them, a high-risk, poor-prognosis mutation.

Confidence? Shot. Gone. Destroyed. My hearth was pounding. I felt like I was going to have a panic attack.

I asked the on call doctor about it the following morning, and she said she’d discuss it with Dr. Jabbour. Today, she followed up: yes, it’s considered high risk. But there’s no change to the treatment protocol. She didn’t seem overly concerned and reassured me, “Dr. Jabbour is the best person to cure you.” I think this may significantly decrease my odds of survival, but survival is still possible. GPT suggests it could have a 30% impact. Speculating here, but it may increase my odds of moving forward with transplant.

Still, I’ve been doomscrolling studies ever since, and everything confirms the mutation is bad news. Optimistic Bryce is telling myself that most of these studies are outdated, and those patients didn’t get the next-gen treatment I’m receiving now. I need to wait, hear directly from Dr. Jabbour, and see how I respond to dose dense chemo before spiraling too far. But in the meantime, Anxious Bryce is discouraged. Highly discouraged. Highly anxious. And scared. Scared of missing Alice grow up. Scared of leaving Mary Beth a widow. Scared of having my parents watch me decline. All of it.

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In leukemia part 1, I obviously had moments of panic and despair, but I always kind of believed I’d survive. I also kind of always expected I’d relapse. I know a few people in real life with ALL, and they’re all doing well. With odds being what they are, and with others doing well, I weirdly always thought I’d be the one who relapsed.

Now here I am – relapsed – and things are somehow better than I imagined, thanks to treatment innovations, but also way worse, thanks to this mutation.

I feel like I’m in the best place, with the best doctor, and the best plan… But I’ve got this mutation anchor pulling me under.
And I’m just hoping Dr. Jabbour – and my body – have a life raft waiting.

Gratitude – June-27

I wrote this post last night. This has been a downer of a post and a downer of a couple days. So I figured I’d try to counter a bit of sadness today.

This morning’s labs showed a drop in the blasts circulating in my blood, down from 2% on 6/19 to 1% this morning. Presumably they were higher when I was admitted a couple days ago, but I’m not sure why I only have two datapoints as they’ve taken labs several times in between. My laymen understanding when your marrow fills up, it starts dumping leukemia blasts into your blood stream. Seeing a decrease in blood blasts would indicate to me that the chemo and immunotherapy seems to already be working. The on floor doctor confirmed this morning that everything is looking good, and I’m performing as expected.

I tolerated the first dose of Inotuzumab well enough so far. They gave me benadyrl with the infusion and I took a nice 2 hour nap.

I’m getting prescribed anxiety medication; I’m looking forward to feeling less anxious and think it’ll probably be beneficial to my health.

Supportive family

Supportive community – people are showing up for me and Mary Beth. I’m getting a lot of thoughtful and meaningful comments, texts, and calls. I’m not responding to all of them because I candidly haven’t had it in me, but I’ve read them and appreciate them.

Science and advancement in treatment

This chubby baby. I got to facetime her last night after her water day at school.