Day 28 - A Milestone Day
In support of
Jonathan Agin
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Jonathan Agin
Hi Everyone,
For those who are new to Jonathan’s leukemia journey, I wanted to take a moment to share a quick recap—though being brief isn’t exactly my specialty!—before diving into some encouraging updates.
This past month has been an emotional rollercoaster for our family. Thanks to the incredible team at Northside, Jonathan’s diagnosis of APL (Acute Promyelocytic Leukemia) was made quickly after he arrived in the ICU, allowing chemotherapy to begin the very next day. One of the key medications—Arsenic—was started immediately, which is crucial for survival with this particular type of leukemia.
Jonathan faced several serious complications during those early ICU days, including needing dialysis, but we were so relieved when he was moved to Northside’s Blood and Marrow Transplant (BMT) Unit just six days after admission.
Some of you may know that I’ve worked in marketing with the Northside Hospital Cancer Institute for the past 10 years, so I already knew he was in the very best hands. But after 28 days there, I now truly understand the depth of their care and expertise. The doctors, nurses, techs, housekeeping staff—every single person we’ve encountered in the BMT unit—has been incredible. In addition, the many specialists involved in Jonathan’s care (nephrologists, cardiologists, endocrinologists, neurosurgeons, neurologists, pulmonary and critical care, ENT—you name it) have been nothing short of amazing.
Jonathan’s case has been especially complex due to his recent diagnosis of Type 1 diabetes. Unfortunately, last week he experienced a frightening setback when his blood sugar dropped to a dangerously low level as a result of steroids. He was moved back to the ICU and intubated—a terrifying experience for all of us, especially Jonathan, who woke up to find himself on a ventilator.
Thankfully, that ICU stay was brief, and within days he was back in the BMT unit, regaining strength, walking with assistance, and even enjoying a special visit with Darrah before she left for summer camp.
This week brought another challenge, as fluid buildup from the medications and daily transfusions caused pressure around his chest, requiring oxygen support and slowing down his physical recovery.
But now for the GOOD NEWS!
In just the last couple of days, Jonathan’s platelets and other blood counts have recovered enough that he no longer needs transfusions—a major milestone. Today marks Day 28 of treatment, and he had a bone marrow biopsy to determine if he’s in what the doctors call molecular remission. They are feeling very optimistic, and we are too.
While we wait for the results (expected early next week), the focus is on reducing fluid in his body and continuing aggressive physical and occupational therapy to prepare him for going home—including conquering the 15 stairs to our bedroom!
We could not have made it through these past four weeks without the love and support of so many people. Jonathan’s sisters and parents have been at the hospital daily, taking turns by his side including sleeping there almost daily. My sister Lara and brother-in-law Andrew have been lifesavers with Darrah, always stepping in—even in the middle of the night—without hesitation.
Our incredible neighbors Dawn and Tom have cared for our dog Duke, stepped in as surrogate parents, and our other neighbor Margo has been my own personal gluten free chef! Jonathan’s basketball buddies (who set up this site) and tennis friends, along with so many others, have shown up in every way imaginable. And of course, all of you who have been praying, donating, and sending kind, encouraging messages—we are overwhelmed with gratitude.
We’re hopeful that Jonathan may be able to come home later this week or next, as we begin to adjust to our “new normal” and continue outpatient care.
Thank you, truly, for walking this journey with us. I’ll update you all again when we receive the biopsy results or have more news to share. In the meantime, your continued prayers, positive thoughts, and good vibes mean the world to us.
With heartfelt thanks,
Alli
Comments
Leslie franco
Michelle Gersten
Jonathan has always had a special gift for friendship to go with his wonderful sense of humor.
Jkalterpt
Alirosekramer
Pam B
Pam B
Pam B
Susan Sarfati
Amy Kaufman
Martin Braunstein
Love and Best Wishes, Marcia and Marty Braunstein