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A View from Julie Guillot

Fighting for Zach

The treatment for cancer is often as devastating as the disease itself.

  • June 23, 2015

When my oldest son, Zach, was five years old, he was diagnosed with an aggressive type of cancer called acute myeloid leukemia.

Julie Guillot

The diagnosis was a nightmare. What came next was worse.

This story is part of our July/August 2015 Issue
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Soon after the diagnosis, Zach began the first of many rounds of chemotherapy so strong it was near the limits of what a human can tolerate. He downed dozens of pills and tearfully endured countless pokes, scans, bone marrow aspirations, spinal taps, and more. Drugs were injected directly into his spinal fluid, then his body. He suffered uncontrollable 105° fevers, unrelenting nausea, and hours-long nosebleeds—just a few of the side effects of the treatment we were grateful to have. His skin burned (literally) from the inside out. Each dose of chemo, in its attempt to kill every cancerous blood cell, killed healthy cells as well, causing hair loss, plummeting blood counts, and near zero immunity, resulting in life-threatening infections.

He’d say to me, “Mom, I’m scared I’m not going to make it. I want to live!” He was willing to try anything, and did.

Zach received every therapy available, both mainstream and experimental, in three top hospitals. Despite all of this, I watched him die in the ICU at just nine years old—not from cancer but from treatment toxicity following a third bone marrow transplant, which left him bleeding uncontrollably from a chemo-damaged liver.

I am the only family member who has ever read Zach’s autopsy report. It was beyond painful to read but eye-opening in its revelation of the way current treatment regimens left a damaging mark on every organ system. I knew there had to be a better way, and this thought consumes me daily.

I know many mothers who, following the death of a child, are virtually incapacitated, frozen in grief. I often wonder what’s wrong with me, because having loved Zach with every fiber of my body and fought wildly to save him, I should be frozen with them. Instead, I am obsessively driven to “get the monster” that took my kid, and to save other families from this torture.

Thankfully, new and better treatments are on the horizon—cutting-edge approaches like antibody-based therapies and reëngineered T cells that harness the power of the immune system (see “Biotech’s Coming Cancer Cure”). Such approaches might have saved Zach, and they have the potential to cure people without the collateral damage that can ruin lives. I met a man recently who could not run because he was cured of his childhood leukemia but the treatment destroyed his hips. There’s a five-year-old now in Seattle Children’s Hospital whose best option is a bone marrow transplant, but a round of chemo has damaged her heart to the point that she can’t endure the procedure.

Zach’s treatment took us to Seattle’s Fred Hutchinson Cancer Research Center, where we learned about a new treatment using T-cell receptor technology showing promise in clinical trials against AML and in preclinical trials against killers such as lung, pancreatic, and ovarian cancers.

Even more exciting is that this T-cell receptor treatment targets only cancer cells, leaving healthy cells alone. The vision of a day when the need for chemo, radiation, and bone marrow transplants is greatly reduced or even eliminated, and a safer, simpler cure works for life, is what drives me. I now spend all my time raising funds to speed the development of this next generation of reëngineered T cells in the lab of Dr. Phil Greenberg at Fred Hutchinson.

I do it because I’ve seen the true face of cancer. I do it because it feels better to stay in the fight than to walk away, defeated. Most of all, I do it for Zach and all the kids like him.

Julie Guillot, a former IT consultant and executive, dedicates her time to raising her two surviving children and helping to speed less toxic cancer therapies.

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