Diagnosis

April 10th, 2025 was a day that James and I could never have seen coming.

The day prior marked nine weeks that we had been home with our miracle baby, Zander. That morning, he was scheduled for his 2 month check-up and vaccinations with his pediatrician, Dr. R. As was always the case whenever we saw Zander’s doctor, we came prepared with a running list of new parent questions. Are we using the right formula? Is it normal for him to go days without pooping? Do we need to keep sterilizing his bottles with every feed or is washing them enough? Is it safe to allow visitors yet? Why does his back sweat when he sleeps?

After patiently and reassuringly answering our questions, Dr. R began his physical exam on Zander. He paused and kept going back to one particular spot in Zander's left abdomen, saying he could feel a lump or swelling of some kind. He assured us that it could be nothing, but wanted to get an ultrasound to be safe.

The imaging center was able to fit us in that morning. It had already been a while since Zander ate and as he cried for a bottle, we were told we’d have to withhold any feeds until after the scan. We pacified him for what felt like an eternity until it was finally time for the ultrasound.
By late afternoon, Dr. R called with unexpected results. The imaging showed that Zander’s pancreas was very enlarged and there were lesions on his liver. He would be referring us to UVA Children’s Hospital for some additional testing and he had already confirmed that they'd be able to work us in the very next day. He said we’d be seeing the Pediatric Hematology/Oncology team. Hearing the word “oncology” took the air from my lungs. They think this is cancer.

After a long evening and night of worrying what the next day would bring, we made the 2-hour drive to Charlottesville the next morning. The doctors at UVA weren’t sure what to make of the ultrasound and said their first step would be a blood draw to run some labs. When the results came in, the doctor sat down to review them with us. She explained that Zander’s white blood cell count was 652,000. A normal WBC would be 10,000 or less. A count this high was indicative of leukemia.

From that point on, things began moving at such a rapid pace that much of it is still a blur. By 2pm, our seemingly healthy and happy baby boy was being admitted to UVA’s Pediatric Intensive Care Unit (PICU). By 12am, he was in the OR getting lumbar puncture to receive his first dose of chemotherapy directly into his spinal fluid and having a PICC line placed for administering future doses of IV chemo and steroids. A bone marrow biopsy was also taken to learn more about the type and extent of disease. I'll never forget being brought to his room after the procedure to find him lying in the tiniest of hospital beds that somehow still looked much too big for him. He was asleep and intubated, hooked up to multiple machines and monitors. I briefly wondered why the room looked so familiar, and then it hit me. It was a carbon copy of the room my dad had been admitted to in UVA’s adult ICU almost seven years prior. The room where we came to say our goodbyes and where he ultimately passed away of the same disease that my son was now fighting.

Before his diagnosis, Zander gave us no indication that he was sick. Many of the doctors here at UVA have commended his pediatrician for having caught this through a routine wellness exam. They've also said that Zander’s white blood count of 652k upon admission was by far the highest they’d ever encountered. The leukemia was progressing so rapidly that it was probably a matter of days before symptoms would have emerged. We're incredibly grateful to Dr. R for trusting his instincts and sounding the alarm.

Anyone familiar with the story of how Zander came to be knows how we longed and carefully planned for our miracle baby, how patiently we waited for him, how special and incredibly loved he is. James and I had just spent nine blissful weeks falling madly in love with this sweet little boy who has made our family whole. In a matter of 24 hours, we went from thinking we were taking our baby in for a routine check-up and a few vaccines to learning that he would be fighting for his life.

Zander on his way to his check-up the morning of April 9th

Zander's official diagnosis is B-cell Acute Lymphoblastic Leukemia (B-ALL). It's the most common type of childhood leukemia and often curable, but babies diagnosed at under one year old present unique challenges. The treatment protocol for infant ALL is intense and although we're already a month into his treatment, there is a long and difficult road ahead. James and I have been living in Charlottesville since Zander was admitted on April 10th and will likely be here for weeks, maybe even months, to come.

This blog will serve as our primary means of sharing updates on his journey -- our way of documenting the Adventures of SuperZan and keeping loved ones informed without having to relive the hardest details over and over. We kindly ask that updates be followed here so we can focus our energy where it's needed most: on Zander and his healing.