I Lost My Son to Leukemia, But Have Hope That Soon No More Parents Will
Julie Guillot knew something was wrong with her 5-year-old son, but she never thought the diagnosis would be an aggressive pediatric cancer. Years later, she's optimistic that if we invest in our children and their care, there can be a cure.
I remember standing in my kitchen when a TV ad caught my eye. Bald kids fighting cancer—some with angelic smiles and others grimacing in pain—with their heartbroken parents. I recall thinking how terrible that must be. Like most of us, in the back of my mind, I thought it could never happen to me. Not to my child. After all, we ate all organic food, exercised, and had no family cancer history. I was “that” mom who tried to do everything right. I couldn’t have been more wrong.
It started with strange, dark bruises. But hey, all kids get bruises, don’t they? Then a little weight loss. And, did he look pale, or am I imagining it? I started Googling symptoms, like we all do. Each time, the terrifying words “symptoms of childhood cancer” flashed across my screen. I never told anyone but watched him like a hawk. Then, one week, symptoms escalated. Daily headaches—in a 5-year-old. Fevers. Coughing. We visited the pediatrician three times that week where I rattled off a laundry list of concerns that I keep in my wallet to this day. The final visit, I requested a blood test. The doctor asked me if I was worried about leukemia. I was, but just couldn’t say those words out loud.
I remember standing in my kitchen on a Saturday morning when the call came. Like a punch in the gut out of nowhere, the word “leukemia” had me doubled over. In an instant, I joined that club of tearful parents I’d seen on TV just months earlier. The unimaginable had happened to my child.
I rushed my firstborn son, Zach, to the emergency room in Dallas. Days later, he was diagnosed with acute myeloid leukemia, or AML. What I didn’t know then is that AML is very aggressive and remains, to this day, one of the poorest prognosis childhood cancers. But I was determined to be “that” mom who would do everything right—I would ask the hard questions, research, push, and even travel to three different hospitals to find the best care for Zach. Despite the odds, hope endured.
Zach was a tall, tough, good-looking, energetic kid with a booming voice and personality. He was a natural leader in a crowd who loved superhero costumes and rollercoasters. From the beginning, even as a kindergartner, he somehow understood, on a deep unspoken level, that his illness was serious. He’d do whatever it took to get better. He learned to dutifully swallow handfuls of pills at 2 a.m., down buckets of nasty liquid for scans and colonoscopies, and endure tortuous nasogastric (NG) feeding tube re-insertions because he’d suffer relentless nausea and throw up the tube.
Four years. Multiple rounds of maximum-a-human-can-tolerate chemotherapy. Uncontrollable fevers. Full body radiation. Skin burned by treatment from the inside out. Countless trips to the ER, and some to ICU. Months as an inpatient, often in isolation. Three bone marrow transplants. Yes, three. This is pediatric AML. You see, kids, unlike many adults, can tolerate the brutal therapy. And despite knowing the pain to come, they often maintain an amazing attitude and will to live. Zach wanted to live.
Sadly, despite doing everything in my power to save him (and I mean everything), he died in the intensive care unit, on a ventilator, at just 9 years old—weeks following his third transplant. Years of treatments meant to save him destroyed his liver. I always believed Zach could beat it—I couldn’t have been more wrong.
You see, despite great advances, kids are still dying of leukemia and treatment complications. Cancer remains the leading disease killer of kids, and leukemia continues to lead the list (only recently edged out by brain tumors).
Survive does not equal thrive. Pediatric leukemia survivors can struggle with a myriad of late issues including organ damage, infertility, growth issues, secondary cancers, cognitive and psychological issues, and shortened lifespans. I know this firsthand, as my college roommate’s brother (a childhood acute lymphoblastic leukemia survivor) passed recently—in his 40s—due to long-term, treatment-related liver issues. A baby died months ago of “popcorn lung,” of all things, related to her bone marrow transplant, and another is paralyzed from the neck down, and blind, from AML treatment. And these are children who were “cured.”
But, hope is high. Targeted and immune-based therapies, as well as personalized medicine—combinations of drugs tailored to a patient’s specific cancer profile and genetics—show great promise, especially in high-risk leukemias. We are living in a time of accelerated discovery and new cancer drug development thanks to organizations like The Leukemia & Lymphoma Society.
Sadly, however, our kids wait more than 6 years, on average to receive cutting-edge therapies designed for adults, even though their cancers are biologically different. Our tough, highly resilient kids—the pioneers of chemotherapy, bone marrow transplants, and cellular therapies—are last in line. This is wrong.
As a former engineer and technology consultant, I have spent years working to understand the issues slowing progress in childhood cancer—an eye-opening experience. While, yes, funding research remains imperative, there are a host of other barriers slowing progress in pediatric leukemia. This includes drug and genomic testing access, dated and underfunded infrastructure, inefficient processes, data silos, and more. We have significant but solvable issues and tangible opportunities to improve outcomes. I am grateful that The Leukemia & Lymphoma Society recognizes the unique challenges we face today in pediatrics, and they are stepping up to lead a comprehensive, multi-front attack on childhood high-risk leukemias via their new Children’s Initiative.
It’s been five years since my Zach left. Like many of you, I struggle every day with guilt, “what ifs,” and even motivation to get out of bed. Even writing this has been challenging. But, like Zach, I choose to fight on as a childhood leukemia advocate, LLS volunteer, and supporter of the Children’s Initiative. Please consider joining me as a supporter, volunteer, or initiative partner.
After all, history has shown us…when we invest in our cancer kids, our tough and resilient pioneers—we’re investing in breakthroughs for ourselves. And, it’s just the right thing to do.
You can learn more about The Leukemia & Lymphoma Society's Children's Initiative here.