More Than You Can Handle by Miguel Sancho

Author:Miguel Sancho [Sancho, Miguel]
Language: eng
Format: epub
Publisher: Penguin Publishing Group
Published: 2021-03-02T00:00:00+00:00

Chapter 11

Conditioning

Hospitalworld warps time, and it marks time differently too. Our first day on the Unit wasn’t counted as Day 1, it was Day −13. This was all laid out on our road map, a custom calendar in spreadsheet form charting the medications and procedures to be administered each day in accordance with the treatment plan. Those thirteen negative-numbered days ticked off a two-week countdown to Day 0, Transplant Day—colloquially known as the patient’s Rebirthday. During that time, Prasad and the team would put Sebastian through his chemotherapy regimen. How his little body handled that sustained assault would determine both the quality and quantity of the rest of his life.

There are more than one hundred approved chemotherapy drugs in use today, primarily for the treatment of cancer. Which ones a patient receives depends on the type, stage, and location of the cancer. Modern advances have made it possible to boost the chances of effective treatment while minimizing the odds of serious side effects, but the fundamental mechanism of chemotherapy hasn’t changed from the blunt, brutal approach it’s always been.

Here’s how it works. Chemo kills cells that grow and divide rapidly. Cancer cells, notoriously, grow quickly and out of control, so they are particularly vulnerable to chemo. But fast-growing healthy cells get caught up in the culling too—these include those of the skin, the hair, the intestines . . . and white blood cells. That’s why immune deficiency patients frequently go through chemo for transplant—they don’t have cancer, but the chemo is a reliable way to eliminate the existing immune system.

Unfortunately, CGD patients typically require the most aggressive form of chemotherapy “conditioning,” what’s called “ablative” treatment. “The CGD kids have a very high incidence of graft failure. Even when using donor cells from perfectly matched siblings, we see a much higher rate of rejection,” explained Dr. Kurtzberg. “We think it’s because the rest of the immune system is compensating for the malfunctioning neutrophils. So it’s harder to knock it out. We need to give them more medicine.”

Over the years Duke has developed its own CGD-specific protocol. Thankfully it avoids the need for the harshest tool in the shed—total body irradiation—that carries a significant long-term risk of brain tumors, thyroid suppression, and effects on cognition. Instead, Sebastian’s conditioning would start with three days of a drug called fludarabine, then four on the heavy-hitter busulfan, and four more on a third called Cytoxan. We’d soon become intimately acquainted with the unique profile of each.

On the morning of Day −12, nurse Liz Vaughn and one of the attending doctors entered the room with the first dose of fludarabine. Before the drug is administered, two doctors must separately review and sign off on the order and the dosage—the optimal dosage window is narrow, the consequences of miscalculation can be fatal. After dotting every i and crossing every t, the nurses hung the solution on Sebastian’s pole and proceeded to pump poison into our child’s chest. A heavy conditioning regimen is typically agonizing. “When he

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