THE FIRST TIME Lindsey Gruwell Headrick passed through the doors of St. Jude Children’s Research Hospital, she was a 9-year-old leukemia patient, paralyzed from a stroke and unable to speak.
The second time she turned to St. Jude for help, Lindsey was a 13-year-old swimmer, facing a relapse and another two-and-a-half years of intensive treatment.
A third bout with cancer occurred when she was 19. After a bone marrow transplant, she left St. Jude cured.
In the summer of 2019, Lindsey traveled to Memphis yet again. Now 30 years old, she arrived as a participant in the St. Jude Lifetime Cohort study, also known as St. Jude LIFE. It’s a research project that may save the lives of other children in years to come.
More than 5,825 survivors have enrolled in St. Jude LIFE. This study focuses on cancer patients who were treated between 1962 and July of 2012. The hospital brings them back to the hospital for health screenings for the rest of their lives. Lindsey is the 5,000th person to take part in the study’s medical evaluations.
It’s a win-win for Lindsey and other participants. Not only do they learn about their own health status, but they also provide researchers with insights that help current and future survivors worldwide.
Most survivors experience some side effects of cancer and its treatment. Some children received chemotherapy that affects hearing or fertility. Others required radiation therapy that puts them at risk for secondary cancers or heart issues. Certain diseases carry their own long-term side effects such as memory loss or learning problems. The possibilities are endless, based on the individuals and the therapies they received.
As part of her initial St. Jude LIFE visit, Lindsey spent three exhausting but exhilarating days on campus. She spent nearly two hours doing mental calisthenics, in the form of brain-teasers and memory tests. Then she laced up her sneakers to run on a treadmill and stand on a shifting platform to evaluate her balance. There were blood tests and bone density studies. Hearing and eye exams. Genetic counseling sessions and skin biopsies. She filled out food questionnaires, took part in a psychological exam and described her health habits.
The systematic assessment of St. Jude LIFE is unique. Other centers typically get much of their data from health registries. They don’t have access to the level of detail that we do — information about behavioral issues and detailed clinical assessments.
As she moved from place to place, Lindsey also met old caregivers and new patients just starting their journeys. She roamed familiar halls and explored the new facilities that have been constructed since her last visit. She celebrated the changes and contemplated the impact the hospital had on her life.
“By being in the LIFE study, I’m giving back a little to St. Jude research and I’m staying connected to the hospital,” Lindsey explains. “The data collection is essential to progression and growth for the future. What they gather from me might help improve treatment regimens or decrease lasting side effects of those who face this cancer journey.
“It is beyond my pleasure to participate in a study that will help future patients, their treatments and quality of life.”
The beauty of St. Jude LIFE is that every survivor receives the same comprehensive evaluations. Similar programs at other institutions screen survivors based on specific risk factors known to be associated with that patient’s treatment. But St. Jude LIFE performs a much more thorough evaluation.
“The systematic assessment of St. Jude LIFE is unique,” says Melissa Hudson, MD, who serves as the study’s co-principal investigator along with Les Robison, PhD, St. Jude Epidemiology and Cancer Control chair.
“No other center is doing this in a population that has such a wide age diversity,” adds Hudson, who is the hospital’s Cancer Survivorship Division director. “We have very, very long-term survivors, some of whom are approaching 70 years old. Other centers typically get much of their data from health registries. They don’t have access to the level of detail that we do — information about behavioral issues and detailed clinical assessments.”
What they gather from me might help improve treatment regimens or decrease lasting side effects of those who face this cancer journey. It is beyond my pleasure to participate in a study that will help future patients, their treatments and quality of life.
What we’ve learned
St. Jude LIFE is now the largest cohort of clinically assessed childhood cancer survivors in the world.
Researchers have published more than 120 papers in medical and scientific journals, sharing insights they’ve gleaned from the massive amounts of data collected. The discoveries include findings in a broad range of areas — from memory issues and fertility to secondary cancer risks and quality of life.
The St. Jude LIFE study found that adult survivors of childhood cancer have a nearly two-fold greater cumulative burden of chronic health problems than the general public. A large percentage of these survivors have undiagnosed conditions that could benefit from early interventions to preserve their health. For instance, scientists learned that survivors in their mid-30s are apt to display frailty typically seen in elderly individuals. As a result, researchers are developing ways to reverse these issues in survivors and prevent them in current patients.
Whole-genome sequencing of St. Jude LIFE participants also revealed that almost 6% had inherited mutations in one of 60 genes that can lead to cancer. That number was about 10-fold greater than among people with no childhood cancer history. This finding helps clinicians pinpoint which survivors should be given priority for genetic testing.
“We’ve learned that we should counsel all of our survivors about the genetic risk underpinning their type of cancer and the potential for subsequent cancers,” Hudson says.
Discoveries emerging from the study are having a dramatic impact on the lives of childhood cancer survivors.
“The results are already informing the guidelines we’re giving survivors,” Hudson says. “And the findings are helping us develop interventions to preserve survivors’ health as they age.”
A present and a future
As part of the St. Jude LIFE evaluation, Lindsey learned about her specific health risks as a childhood cancer survivor. The experience reminded her of a pivotal discussion she had with her physician after her bone marrow transplant.
“At St. Jude, I felt like I’d been in a bubble, protected,” she says, “and now I was going out into the world where even the trees around me would have fungal spores. But my doctor told me, ‘When we’re driving to work, we have a risk that we’re going to get into an accident and die, but we take that risk. Go back to college and do what you want to do. Whatever comes, we’ll deal with it.’”
Lindsey took his advice and finished her nursing degree.
“Since age 9, I had been in the oncology environment,” she explains. “That’s where my heart was.”
So, it makes sense that Lindsey, the mother of three beautiful daughters, now works in a hospital caring for children with cancer.
“St. Jude has literally given me everything I have now,” she says, “the present and a future.”
Beyond Compare: Healthy Volunteers
As St. Jude LIFE researchers pore over data generated by thousands of survivors, they need to know how the results compare with those of people who have never had childhood cancer or its therapy. That’s where healthy volunteers come in: people like Kirk Johnston.
Johnston volunteered to undergo testing so that scientists would have a yardstick by which to gauge the health of former patients.
“I thought it would be a great way to help St. Jude,” says Johnston. “I don’t know of any other place where you could get such a comprehensive view of your current health,” he says.
The control subjects’ contributions are crucial, according to Melissa Hudson, MD, Cancer Survivorship Division director.
“As scientists, we need to know whether our findings with survivors are different than what we’d expect to see in people who have not been exposed to cancer therapies,” she says. “For example, we might observe that our survivors have premature menopause or high blood pressure, diabetes, obesity or high cholesterol. Are their rates different from other people who live in this region? The control group can help us know the answer to those questions.”
Johnston says the volunteer experience was a fulfilling way to give back.
“St. Jude is a special place,” he says. “It was an honor to be able to help with the research and to be checked out by such an amazing team.”
From Promise, Autumn 2019