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Chattering and giggling with their families, the two little girls flitted through the displays in a large New York City toy store picking out their favorite dolls, buzzing with the kind of energy four-year-olds muster so easily.
Looking at them now, you wouldn’t know that Imani and Everly fought for their lives in the earliest days of their existence. Well before they could smile, walk or talk, they endured major surgeries to remove rare, cancerous brain tumors.
Imani and Everly’s families received prognoses so dire that palliative care was being considered. But then, the two families from New York and Texas whose daughters who had strikingly similar tumors were referred to St. Jude Children’s Research Hospital.
There, they received help – and hope.
“A decade ago, these children would not have survived,” said Amar Gajjar, MD, who is Chair of the Department of Pediatric Medicine at St. Jude.
“With our advances in the understanding of the biology of brain tumors, and newer treatment approaches to treating tumors, these children are not just surviving but they’re growing and thriving and meeting developmental milestones,” he said.
Over the past 30 years at St. Jude, Gajjar has led the development of innovative clinical protocols that have significantly improved survival rates by providing risk-adapted treatment and targeted therapies for some of the most malignant forms of brain cancers that threaten kids’ lives. He has shared data and collaborated on research studies with scientists around the world.
In the past decade, Gajjar has also focused on efforts to reduce neurocognitive side effects from radiation treatment – and even sought to avoid radiation altogether in cases where it’s safe and effective to do so, like with Imani and Everly.
Gajjar said in Imani and Everly’s case, two things really helped set apart the care and treatment St. Jude offered.
First, the depth and breadth of understanding St. Jude doctors and researchers have about childhood brain cancers and tumors, which affect kids differently than the same cancer in adults.
In Everly’s case, for instance, doctors at her hometown hospital offered a dire prognosis because adults who have a high-grade glioma like hers do not usually fare well.
“But we had data that showed infants with these high-grade gliomas actually do quite well with treatment,” said Gajjar, who is also the Scott and Tracy Hamilton Endowed Chair in Brain Tumor Research. “So, we talked to the family and told them ‘We know how to take care of this and treat you with therapy with minimal side effects.’”
The second piece that sets St. Jude apart, Gajjar said, is the molecular profiling doctors and researchers are increasingly doing to better understand cancer in kids. This enables doctors to target the vulnerabilities in tumors to kill the cancer without leaving kids with serious long-term side effects. Throughout his career, Gajjar has authored more than 400 papers, many of which have contributed to the improved clinical care of children with pediatric brain tumors.
Now cancer-free and three years out of treatment, Imani and Everly come to St. Jude every six months for scans to confirm they’re still free of disease and to ensure their cancer treatment is not having lingering side effects.
“Because of our donors, St. Jude is able to support families in a way that very few institutions can,” Gajjar said.
For Imani and Everly, scientific advances have meant a full life defined by more than surviving a catastrophic disease.
Imani is a thoughtful 4-year-old, and a protective and watchful big sister. Everly is outgoing and inquisitive, effortlessly making friends wherever she goes.
The two families have formed a close friendship having had daughters go through harrowing diagnoses, brain surgeries and chemotherapy in their infancy. These days, when they reunite, the girls greet each other enthusiastically with arms wide open. They call each other’s parents “aunt” and “uncle.” And the families even vacationed together recently in Florida, fostering a bond they hope will last a lifetime.
“St. Jude gave us a tangible sense of hope,” Everly’s mom Kelsey said. “The standard of care, the high level that staff are held to and hold themselves to is incomparable. It’s incredible how much thought and how much detail is put into every aspect of the cancer journey.”