Week 1: Reduction

It's only been about six weeks since we arrived at UVA, but so much has happened in such a short time that Zander's first week of treatment feels like an eternity ago. Following his diagnosis on April 10th, he was admitted to the Pediatric ICU where he would be intubated, sedated, and immediately started on a carefully planned treatment protocol to bring his white blood cell count (WBC) down to safer levels.

The night of his admission, he went to the O.R. under general anesthesia for several procedures. First, he received a central venous line (PICC line) by which chemotherapy and other medications would be delivered throughout the course of treatment. He also got a nasogastric (NG) tube that would make it easier to administer oral medications and provide an alternative method for feeding him, should the need arise. Finally, he underwent a bone marrow biopsy and lumbar puncture (spinal tap)—part of the diagnostic process to understand how far the leukemia had spread. 

 

Zander just before being taken to the operating room.

His WBC peaked at a dangerously high 682 that first night. The goal of this first week would simply be to bring it down slowly and safely, resulting in reduction of his leukemia burden. While the Pediatric Hematology/Oncology ("HemOnc") team delivered a steroid to begin combatting the cancer cells, the PICU team would closely monitor for something called Tumor Lysis Syndrome (TLS)—a potentially life-threatening condition that can happen during cancer treatment when large numbers of cancer cells die rapidly, releasing their contents into the bloodstream. This leads to electrolyte imbalances that can severely damage the kidneys and other organs. Because of his incredibly high initial WBC, Zander was considered to be at a high risk for developing TLS. He had labs drawn very frequently (every 4 hours to start) to track his blood counts and electrolyte levels. He would remain intubated for the first few days in case he should need any interventional procedures to combat the TLS.

By Day 2, his counts were already starting to trend in the right direction. His care team increased his steroid dosage gradually, trying to balance the need to reduce his WBC without overwhelming his tiny system and inducing TLS. His labs held steady, and though still intubated and sedated, he was tolerating treatment well. There's a rule in the PICU that only one care partner (e.g., parent) can stay overnight with the patient. The first night, they made an exception so that James and I could both stay with Zander. But by the second night, one of us would have to leave the hospital. Thankfully, we were offered a room at the Ronald McDonald House (RMH), which gave us a quiet place to rest and was within walking distance of the hospital. Every night from that point on, James and I alternated who stayed with Zander and who stayed at the RMH so that at least one of us was always by his side.

By Day 3, Zander’s WBC had dropped by nearly half. With no signs of TLS yet, he was stable enough to begin weaning from the sedation meds and be extubated from the ventilator. He still needed some oxygen support through a high-flow nasal cannula, but just seeing his beautiful face again—without the breathing tube—was everything. 

Later that evening, we got to hold our sweet boy and offer him a bottle for the first time in three days.

Each day brought new challenges along with new signs of progress. Zander struggled with mucus buildup from the ventilator, some nausea and vomiting, and signs of withdrawal as sedation medications were tapered off. But our little superhero powered through it all. He opened his eyes, responded to our voices, and even gave us a few smiles. His nurses started joking about how feisty he was—raising his little fists to "put up his dukes", earning a reputation as the little fighter we already knew he was.

 

By Day 4, he was off oxygen support entirely. That evening, we got the best update yet: his WBC had dropped to 83—we had reached double digits! He was more alert, curious, and back to showing glimmers of his darling personality. Slowly, our sweet boy was coming back to us.

As he woke up from sedation, Zander showed a lot of interest in the large overhead light above his bed, so Child Life Specialists at the hospital brought in a mobile for him. It quickly became his new favorite thing and has traveled with us from room to room throughout our hospital stay. He particularly enjoys staring at the cute baby looking back at him in the mirror!

By April 15th—just five days after diagnosis—Zander’s WBC had dropped to 39. His labs looked good, and since he was no longer considered to be at risk for TLS, he was deemed stable enough to leave the PICU and move to a regular room on the hospital floor where he would soon begin his chemotherapy induction. It was bittersweet saying goodbye to the incredible PICU team who had cared for him so closely, but this meant that he no longer required such close monitoring, and we were grateful for the progress he had made. Our SuperZan still had a long road ahead, but that first week gave us something we desperately needed: 

Hope. 💛