Living With Cancer: How Rachel Elliott Finally Succeeded With Gene Therapy
Key takeaways:
Rachel Elliott’s medical journey began with a fight against pediatric leukemia.
When leukemia kept coming back, she gambled successfully on gene therapy in lieu of traditional extensive chemotherapy regimens.
In a long remission now, she shares resilience strategies to help others overcome challenges.
First diagnosed at age 11 with one of the most common and curable forms of childhood leukemia, Rachel Elliott’s harrowing journey for survival instead led her to gene therapy — a regimen she believes will transform cancer treatment.
Rachel’s first bout with the standard chemotherapy that so often successfully treats acute lymphocytic leukemia (ALL) began with a rough start. Her devastating blood cancer diagnosis arrived after months of infections and coma in an intensive care unit.
But Rachel stuck to 20 months of standardized, if difficult, leukemia treatment to survive 5 years cancer-free before the disease came back. Shortly thereafter, standard chemotherapy protocols pushed her to the brink of death. Once again, a massive infection overwhelmed her body. For a second time, intensive care unit machines saw her through.
When leukemia struck a third time, Rachel abandoned traditional cancer treatment. Instead, she chose an experimental gene therapy clinical trial at the Children's Hospital of Philadelphia in Pennsylvania. The decision to participate in a gene therapy trial, she says, banished the disease.
Most important, she says, is that her heart-wrenching, 9-year cancer journey sharpened her life mission to live moment to moment. Hardships come to everyone, she says, adding that she aims to share hard-forged lessons of adversity, compassion, and resilience.
“A dream of mine is to continue to share my mindset of positivity, gratitude, and compassion with the world,” she says.
Finding a new normal
One day in 2008, Rachel was a healthy student athlete living in Virginia. Then, she got sick. Really sick. She spent the next 100 days on her back in an intensive care unit battling rare and severe infections.
“I was a healthy 11-year-old kid in middle school and then was sick in an induced coma, pretty much immediately,” Rachel says.
Recovering on a July 4 beach holiday that same year, bruises on her legs suggested the real health threat. All along, her immune system had been dangerously suppressed by childhood leukemia.
Her diagnosis of a common childhood cancer came with a standardized treatment protocol. Unlike the bacterial and fungal infections that almost killed her, leukemia at least came with answers. She would lose her hair. She would endure dozens of clinical visits, hospital stays, chemotherapy, spinal taps, and house arrest with an immune system systemically depressed by design. But the track record for long-term survival from ALL by adolescent girls who complete standard treatment is strong. She was determined to see it through.
“It was kind of a relief in some ways that I didn’t have this mystery illness,” Rachel says. “I could start setting some goals, knowing that it would be challenging and that my life would look different doing chemo rather than being on the soccer field. It was how my new normal looked.”
Having resilience helped her through standard treatment — and unexpected failure
Often feeling isolated in the clinic, hospital, or at home, Rachel says that the first round with cancer taught her how to honor and accept feelings of grief and loneliness and return to focus on compassion and joy. Moment by moment, this new strategy sustained her through successful treatments, followed by high school.
“There were definitely times when I was sad about missing friends and being in the hospital,” she says. “But I was very adamant about never being defined by it. It was just a challenge that I was faced with and needed to overcome.”
This pursuit of resilience in overcoming challenges would be tested by cancer’s return. By 2015, Rachel was a freshman at the College of Charleston in South Carolina. After 5 years in remission, telltale bruises on her legs indicated the cancer beast was back. Her doctors at her childhood cancer clinic prescribed a similar 20-month chemotherapy protocol. Again, treatment started with cocktails of chemotherapy drugs.
This treatment stage may also pose the most danger to cancer patients. The first rounds of intense chemotherapy render the body with few defenses against infection. Rachel succumbed again to invasive bacteria. For the second time in her life, she spent months on life support in an ICU.
Cancer treatment was set aside while she struggled to stay alive. Heart and lung machines required her to be motionless. An induced coma drained her stamina. Her muscles wasted. On emerging, against the odds, to consciousness and health, she once more learned to drink, eat, sit up, and walk. Her longtime medical team wasn’t sure she might endure resumption of chemotherapy. Besides, tests showed the cancer remained in remission.
But just a year later, in 2016, the cancer came back for a third time.
“It was a nightmare to receive the same diagnosis three times from the same team of doctors,” Rachel says. “I needed to find another way.”
Rachel made the decision that traditional leukemia treatment might kill her as much as cancer.
Her gamble with experimental gene therapy paid off
Instead, she joined others battling life-threatening conditions who were willing to bet on experimental gene therapy, which replaces a gene that causes a medical problem with one that doesn’t.
Rachel enrolled in a CAR T-cell therapy clinical trial, where chemotherapy was used first to force her blood cancer into remission. Then, Rachel’s own re-engineered, disease-fighting T-cells were reintroduced to her body to seek out and destroy the remaining leukemia B cells. The injections took about 6 weeks. She kept her chestnut brown hair. She endured no inpatient hospital stays.
Still, there were moments of doubt. What if gene therapy failed?
“I had to focus on the good. This was a new treatment. It didn’t have to be the same story,” she says. “It’s not like we did not have moments that were hard. When I needed to be sad, I let myself be sad.”
Meeting other families and patients, some with more frightening diseases and difficult stories than her own, provoked Rachel to return, moment by moment as needed, with “positivity, gratitude and compassion.”
Thankfully, the gene therapy treatment worked.
More than 5 years later, Rachel has achieved milestones of young adulthood. With a business degree in 2019, she joined the human resources team at Capital One. At 25, in November, she ran a half-marathon. Being active helps her stay in the moment, a lesson cancer taught her.
“I often don’t listen to music while I am running,” she says. “I mostly think and clear my mind and I am really just grateful that my body can move.”
For nearly a decade, a personal war on cancer consumed Rachel’s life. But that is not what defines her: She is training for her next half-marathon event. She continues to write and speak publicly about resilience in the face of hardship.
Young cancer survivors like her, she says, just happened to find themselves at a crushing crossroads early that Rachel says everyone faces, in some way, at some time, in life. Sooner or later, she says, crippling challenges come to us all.
“If you believe something might work, you have to hold space for it,” she says. “I personally believe gene therapy will be the new pillar of cancer treatment.”
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