Health update from Jonathan’s perspective - July 15
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Jonathan Agin
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Jonathan Agin
Hi everyone,
Alli has been doing an amazing job carrying the update baton, but now that I’ve got my “sea legs” under me, I wanted to take a turn and share a few thoughts myself for this update.
Alli has been doing an amazing job carrying the update baton, but now that I’ve got my “sea legs” under me, I wanted to take a turn and share a few thoughts myself for this update.
I’m officially in Week 3 of outpatient treatment—part of an eight-month marathon that runs in four-week sprints: four weeks on, four weeks off, Monday through Friday. Each day features an IV infusion of arsenic (or as I like to say, “I have my lunch with a side of rat poison!”) —and a potent oral version of Vitamin A called ATRA. So far, I’ve been lucky to dodge most side effects… unless you count unplanned afternoon naps, which, honestly, are a little underrated.
My weekly calendar now includes regular visits with a rotating cast of specialists—neurolsurgeon, endocrinologist, cardiologist, you name it. It's like medical Groundhog Day, but with more co-pays.
A lot of people have been asking how I’m doing and how I’m handling everything. The short answer? Mentally, I’m in a good place. If you know me, you know I’m a “glass half full” kind of guy. I genuinely believe that each day has the potential to be better than the one before.
Physically, things are improving—but man, it’s slow. Learning to celebrate “baby steps” as big wins doesn’t come naturally to someone like me. But progress is progress. I’ve been dealing with some lingering effects from the brain bleeds/strokes and medications: hand tremors, mild vision issues, and mornings where my brain doesn’t fully boot up until about 11 a.m.
And to Alli’s frustration, I don’t always like being told what to do and how to do it. Old habits are hard to break!
That said, I’ve worked my way back to doing the basics: getting dressed, walking, shaving, showering, and even some light cooking. Those things might seem small, but for me, they’re major wins—daily rungs on the recovery ladder.
Tonight we even were able to celebrate my first night out for dinner in 2 months, even if it was during the Early Bird Special hours, when there are little to no other people there. It was a great time to say goodbye and thank you to Alli’s’ best friend Rian for flying in from Cali to be our chauffeur, short order cook, organizer and nanny for the last week and a half.
Tonight we even were able to celebrate my first night out for dinner in 2 months, even if it was during the Early Bird Special hours, when there are little to no other people there. It was a great time to say goodbye and thank you to Alli’s’ best friend Rian for flying in from Cali to be our chauffeur, short order cook, organizer and nanny for the last week and a half.
For all you avid followers, I wanted to share a moment that really hit me: Last week, during our first appointment post-hospital, my doctor, Dr. Solh, greeted us with a big smile and said, “How’s my miracle patient?” I laughed and asked, “Why miracle?” He leaned in and said, “You survived multiple strokes, leukemia, and multiple organ failure—and three weeks after discharge, you’re walking, talking, and functioning. That’s a miracle.”
That left me speechless. (Rare, I know.) And while I’m still wrapping my head around it, the truth is, there was a moment not long ago when I wasn’t sure I’d be here to write this.
But I am here. And that’s because of the team holding me up.
Alli and Darrah—my amazing wife and daughter—have been my rock and my reason. My incredible sisters, Lori and Mindy (and their families), my devoted mom and dad who never missed a hospital visit, and my supportive sister- and brother-in-law, Lara and Andrew. And of course, all of you—our “Agin Village.” Every message, prayer, call, meal, and kind gesture has meant the world to us.
APL is a tough cancer. The first 34 days were grueling—but I made it. And every day since has been about showing up, staying positive, and fighting for the next little win: a solid blood count, no nausea, and walking without assistance. The road ahead is long—but thanks to you all, I know I’m not walking it alone. And I plan to cross the finish line.
Thank you for reading. Thank you for being here. Thank you for being our village.
Two and a half weeks down. Seven and a half months to go. One day at a time.
With love and deep gratitude,
Jonathan
Jonathan
Comments
Davidngrocer
Rivanne
Lloyd Marbach
Evelynsw1
You have wonderful family and friends not to mention your positive attitude. You got this!!
Bhsugarman
Werth1108
Susan Kearney
Alevy2
I’m paying ’ attention to you tough journey and am inspired by your good words here. So refreshing to see/“hear” your voice and you progress, especially your outlook re your progress.
Bravo!
I’m staying’ tuned.
Aaron
David Siegelman
Leslie franco
Joan Levine
Much love and hugs,
Aunt Joanie
Gabimessaz
Thebinkers
Dani Oren
Mona.ingram
Andrew.zwig
Karen Hughes
Cheri Christian
Uncle Smith
Fran Smith
That was quite a battle the first week. Seems like you were so lucky to getting the super care you deserve! Keep up the good spirits and fighting attitude. Love you.... Aunt Fran
Sharon Oxman
Pattischiff
Michelle Alperin
Arthur.sohn
Leah Liss
Sharon Wolf
Karen Klein
Mona.ingram