Induction

The next few weeks of Zander’s treatment were filled with both heartache and hope. While the early days in the PICU were focused on stabilization and diagnostics, Week 2 marked the official start of his chemotherapy induction—a 28-day inpatient protocol designed to destroy the leukemia cells and, hopefully, achieve a complete remission.

After discharging from the PICU, Zander’s first day on the floor of the Acute Care Pediatric Unit was rough. Almost immediately upon transfer to his new room, he vomited after a bottle feed and, in the process, dislodged his NG tube. That meant it had to be re-threaded through his nose and into his stomach—which is about as enjoyable as it sounds. He was so upset, and so were we. (Since then, his NG tube has had to be replaced several times for various reasons, and each time it has to be reinserted, and it’s never a pleasant experience.) Fortunately, he rebounded quickly from the trauma of that first tube replacement and was back to his silly self in no time.

Life on the hospital floor was a tough transition for James and I as parents, too. In the PICU, Zander would have one, sometimes two, dedicated nurses who tended to his every need. They changed his diapers, bathed him nightly, and took great care in making sure he was as comfortable as possible. At times, they even fed him in the middle of the night so we could get some uninterrupted sleep. He was often his nurses' only patient and when they weren't in the room with him, they were typically seated right outside and would come running at the first "beep" of any alarms. In contrast, our new room in the acute care wing felt isolated. We suddenly found ourselves removed from the hustle and bustle of foot traffic in the PICU hallways and no longer benefited from the 1:1 or 2:1 care we had grown accustomed to. The floor nurses had multiple patient assignments at a time. They generally only came into the room to administer meds or take vitals, so tending to Zander's daily needs had suddenly become our responsibility again. Never wanting to leave him unattended for any length of time, James and I took turns leaving his hospital room to make phone calls, grab coffee, food, or just a breath of fresh air. Otherwise, one or both of us was with our son around-the-clock.

Mommy and Daddy continued to alternate who stayed with Zander and who stayed at the Ronald McDonald House each night. Since those first days in the PICU, it became a nightly routine to video chat for story time before bed whenever Zander seemed to be feeling up to it.

His second day on the floor, we got news that Zander's WBC had increased to 52. This was the first upward movement we’d experienced, and certainly not what we wanted to see. While he technically wasn’t finished with his one-week steroid protocol, his doctors decided not to wait any longer and began his chemo induction on April 16th, two days ahead of schedule. The steroid had done its job bringing his WBC into a safer range, so it was time to move forward. That night, Zander received his first dose of IV chemotherapy through his PICC line.

Due to  Zander's PICC line being placed near his diaper area, he wears a plastic cover over it that is appropriately dubbed a "mudflap". Also pictured: one of his many pairs of rattle socks. Throughout his hospital stay, he became known for always having a pair of rattle socks on his feet, and the nurses appreciated that they helped to keep his pulse ox in place.

By the third day, he was sleeping better and seemed more interested in feeding. With fewer cords, tubes, and leads than he had in the PICU, we were able to get him situated to where he could comfortably lay on us chest-to-chest—his long preferred napping position. He remained on continuous IV fluids in addition to the chemo, so he was still tethered to some equipment, but we were slowly getting more confident at detangling and moving him around without assistance from the nurses.

The next few days brought more promising lab results. By his fourth day on the floor, Zander’s WBC had fallen to 10.6—officially in "normal" range for the first time! While it didn’t mean he was in remission yet, it was a good indicator that treatment was working. The rest of this treatment cycle would continue as planned, and at the end of induction, a bone marrow biopsy would reveal whether the leukemia had been fully cleared.

The positive response to treatment was not without its challenges. As things progressed, Zander became increasingly fussy and at times, completely inconsolable. He demanded to be held around the clock and cried anytime he was touched by one of the medical staff (which was frequent since his vitals were closely monitored and checked often). At night, he had recurring episodes of hysterical crying where nothing seemed to soothe him. It was incredibly hard to watch and I often cried right along with him. His doctors suspected a combination of chemo-induced nausea and steroid-related agitation. There wasn't much that could be done about the roid rage, and treating discomfort in children this young is inherently difficult since they can’t tell you what’s wrong or what hurts. The team trialed medications like Zofran, Ativan, Benadryl, and even Oxycontin—but any relief he got was usually short-lived.

Unfortunately, chemotherapy doesn't just kill cancer cells—it destroys good cells, too. When Zander’s hemoglobin dropped to 7.1, he received a blood transfusion. (Doctors suspected that anemia might also have been contributing to his discomfort.) As treatment progressed, we were told to expect regular transfusions of blood and platelets. This first blood transfusion did seem to have an uplifting effect on Zander, improving his mood and giving us some much-needed relief from the constant crying and agitation—all of which came just in time for some long-awaited visitors!

As the first week of induction concluded, we received some exciting news: our SuperZan had officially cleared his peripheral blood of leukemic cells (aka "blasts")! He was scheduled for a lumbar puncture (LP) the next day, both to administer chemo into his spinal fluid and take a sample of fluid to check for central nervous system (CNS) involvement. He underwent the LP without any issues and was happily drinking a bottle within an hour of waking up from anesthesia. Over the next two days, we waited for results from the spinal tap and were disappointed to learn that the findings were inconclusive—a few suspicious cells were seen, but nothing definitively identified as leukemia blasts. Still, the doctors had to operate under the assumption that he did have CNS involvement, so future LPs would need to include additional doses of chemotherapy to his spinal fluid.

When Zander has a procedure requiring anesthesia, he is required to be NPO (nothing by mouth) for several hours beforehand. Nothing tastes as good as that long-awaited first baba after waking from sedation!

By the second week of induction, Zander was sleeping more soundly thanks to scheduled Ativan dosing. He seemed dazed when awake, but at least he was finally getting much-needed rest (as were we). His WBC continued to show improvement with fewer and fewer leukemia cells showing up in his blood smears, so his team felt confident enough to reduce the frequency of his lab draws to avoid depleting what little blood his body was able to produce on its own.

Now that we knew the Ativan was providing him some relief, the team eventually cut his dose in half to strike a better balance—enough to calm him without completely sedating him. He was more alert, content, and even gave us some long-awaited smiles—we were finally catching glimpses of our sweet boy again.

Soon, Zander was able to be taken off of continuous IV fluids, which meant that for the first time in weeks, he was no longer permanently tethered to an IV pole! We could move around freely with him and even occasionally step outside for some fresh air. It was nice not to be confined to the same four walls day in and day out. Short strolls through the hallway quickly became routine, and anytime we passed the nurses station, we were met with smiles and chants of “Hiiii Zanderrr!” (By this point, he had stolen more hearts than just ours.) One of the Patient Care Techs even dubbed him the Cutest Baby Ever and awarded him a certificate to validate his new title!

Strolling through the halls with Daddy

Waiting in line at the coffee cart with Mommy

By the end of April, we were nearing the finish line of induction. Most of Zander's blood counts were dropping again, which we were told to expect at this stage, so he received blood and platelet transfusions as needed. He had also begun experiencing high blood pressure, likely due to prolonged steroid use, so he was started on blood pressure medicine. Meanwhile, his appetite waned, and with weight loss being an ongoing concern, his team encouraged more NG feeds at night to compensate for the lack of nutrition he would take willingly from a bottle throughout the day.

Mommy often refers to Zander's platelets as his  “apple juice” due to their yellow color. The bag on the far right holds the formula he receives through his NG tube.

Around this time, we noticed Zander developing hoarseness in his voice. Before long, it was so severe that he couldn't vocalize at all. The lack of voice persisted for several weeks and was one of the most heartbreaking aspects of this journey so far. (You never think you'd want to hear your baby cry, until you can't.) He also started exhibiting some signs of cranial neuropathy that manifested as a slight palsy on the right side of his face. After multiple tests, including a laryngoscopy, MRI, and EEG, the team concluded that the vocal cord paresis and facial neuropathy were likely attributable to one the chemo drugs, Vincristine, which is known to induce toxicity in some patients. He was due to receive one last dose of the drug at the end of induction, but given the onset of these adverse reactions, the team decided to hold the final dose.

 Zander had over 20 electrodes glued to his scalp for the electroencephalogram (EEG), a test that measures electrical activity in the brain over a period of 24 hours.

Zander officially completed his chemotherapy induction cycle on May 6th. Looking back, those weeks were some of the hardest yet—but also some of the most hopeful. We saw our boy responding positively to treatment, felt the comfort of a growing care team who knew him by name, and celebrated every tiny victory along the way.

With the first treatment cycle complete, we could look forward to the next milestone: a bone marrow biopsy that would tell us whether remission had been achieved and determine next steps in the Adventures of SuperZan. 🎗️💛