Apheresis

One of the most nerve-wracking procedures Zander underwent during his inpatient hospital stay was something called apheresis — a medical technology that allowed his care team to collect his T-cells in preparation for a possible future CAR T therapy.

Apheresis is a process in which a patient’s blood is drawn and passed through a machine that filters out specific components — in this case, T-cells. The rest of the blood is returned to the body, and the collected T-cells are frozen and stored for future use. If Zander ever needs CAR T therapy, those cells will be reengineered and reintroduced to help his immune system fight off leukemia. His team described CAR T therapy as somewhat of an “insurance policy” that we may or may not need at a later point in time, depending on his response to the standard treatment protocol and his potential for future relapse. The cell collection needed to take place soon so that they could be manufactured and frozen for later, if and when the time comes to leverage them.

Originally, Zander’s apheresis procedure was scheduled for the week of May 19th, after completing Induction. However, on May 12th, his doctors detected new blasts (immature cells) in his blood. This was a few weeks after Zander had supposedly cleared his peripheral blood of leukemia. With this new development indicating that he might be regressing in his response to treatment, the team decided to move up his next phase of treatment and fast-track the collection of his T-cells.

Apheresis sounds simple in theory, but for Zander, it was anything but. In older children and adults, the procedure is typically performed in the outpatient setting, in much the same way that dialysis is done. However, it’s not commonly performed on infants, so it was decided that Zander would need to be admitted to the PICU for close monitoring during the procedure. It was supposed to be a 2-day admission at most, after which he’d be released back to the main hospital floor. A lot of carefully coordinated preparation had gone into securing the space, equipment, and people necessary to pull off such a procedure — including a specialized team of apheresis nurses. With time now being of the essence, Zander’s oncology team did an amazing job pulling the necessary strings to shift things up by a week.

Apheresis requires high-volume blood flow, which meant placing a special catheter capable of handling the demands of the apheresis machine. Zander had to go to the O.R. under anesthesia for that catheter placement, and it was decided that he would remain intubated and sedated afterward to ensure he remained perfectly still for the apheresis procedure.

Unfortunately, on the day of the scheduled procedure, the new catheter failed on the first attempt. Multiple attempts followed, with delays each time. The catheter would clog, the flow wouldn’t meet the machine’s requirements, or staffing issues would arise with other scheduled procedures taking precedence. 

Finally, after a fourth attempt and a trip back to the O.R. for a larger catheter, the procedure went off without a hitch. The team collected 1.5 billion T-cells, exceeding their original target of 1 billion. It was such a relief to have it done after all the stress and setbacks. Unfortunately, those setbacks resulted in Zander being under sedation for several days beyond what was originally anticipated. This would mean an even longer stay in the PICU while they woke him up and worked to slowly wean him from the medications that had kept him sleepy and immobilized for several days. 

At the encouragement of one of the PICU nurses, James and I stepped away from the hospital one night while Zander was under sedation — our first night sleeping in the same bed since his diagnosis five weeks prior. It was quality time that we needed, and a good reminder to ourselves that it was not only okay — but necessary — to take a breath. Taking care of ourselves and each other, while often difficult, has proven to be important in ensuring that we're showing up for our son the way that we want to.

As he was brought out of sedation and extubated from the breathing tube, Zander began to experience delirium. It's not an uncommon occurrence in the PICU, especially in cases where children are sedated and/or immobilized for an extended period of time, but that didn't make it any easier to witness. He was restless and agitated, hardly sleeping at all the first night. Sleep disturbances resulted in him getting his days and nights mixed up. At times, he also seemed disoriented and unable to focus on things like our faces or voices when we interacted with him. 

Zander has a thing for clocks. We often joke that whenever he enters a new space, his first order of business is to scope out any clocks that might be hanging on the wall. Daddy thought he might enjoy having one close by, so he took the clock off the wall in Zander’s room and laid it beside him in the bed. 

His symptoms eventually subsided after a few days, and it was then that we reached a milestone that we so desperately needed: after several weeks of chemo-induced vocal cord paralysis, we finally received a glimmer of hope that Zander's voice was returning! It seemed to happen almost by accident, where he heard himself let out a little squeak and then just kept trying to recreate the sound. He was so excited! It was incredibly precious to witness and I cried tears of joy and relief at hearing even the slightest hint of my boy's sweet voice coming back.

The apheresis wasn’t the only procedure Zander underwent that week — he was also scheduled for a bone marrow biopsy and lumbar puncture to assess his response to his chemotherapy induction and find out whether he achieved remission with that cycle. The spinal fluid came back clear — no leukemia detected in his central nervous system (CNS). His blood counts also looked great. However, the biopsy showed 4% residual disease remaining in his bone marrow, which meant he hadn’t achieved a complete remission. Even still, when his primary oncologist delivered the news, he shared that he was very optimistic. Given Zander’s age, high-risk stratification (thanks to unfavorable genetics), and how very sick he was at diagnosis, this progress was a win. To put it in perspective, his disease burden at diagnosis was nearly 90% — so to be at 4% now was something to be celebrated, even if it wasn’t the 0% we hoped for. The next step would be to move forward with a cycle of Blinatumomab, a targeted immunotherapy that we hoped would clear the rest of the disease.

Looking back, that week brought so many ups and downs — from sleepless nights and technical hurdles to moments of triumph and reassurance. We hope that Zander continues to demonstrate a positive response to traditional treatment protocols and that we never have to resort to CAR T therapy. But thanks to modern medicine, technology, and the efforts of several highly skilled doctors and nurses, we have a safety net. We have T-cells on standby. We have options.

And most importantly, we have our superhero — still fighting, still smiling, still squeaking.