The first thing Jessica Marty noticed was a lump on her son’s neck.
David Marty looked like a healthy, energetic 7-year-old. He had not been unusually tired. He was not covered in bruises. He had been swimming and playing like any other child. His mother thought maybe he had swallowed pool water and picked up a virus that caused a lymph node to swell.
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Weeks later, after appointments, blood work and a biopsy, the family got the call parents dread. Pack for two weeks, they were told, and come to St. Louis Children’s Hospital.
David had cancer.
Now 9, David is being treated for B-cell acute lymphoblastic leukemia, or B-ALL, at Siteman Kids at St. Louis Children’s Hospital. September is Pediatric Cancer Awareness Month, a time when families, doctors and advocates work to draw attention to children whose lives are interrupted by cancer and to the research that has changed what is possible for many of them.
For the Marty family, awareness is not an abstract cause. It is the hospital room, the emergency department, the clinic visit, the medicine schedule and the school day measured in hours instead of full days.
“He is not great,” Jessica Marty said. “He has not made it to school much yet, but he’s trying his best. He is pushing himself to try and make it to school, but if we get a half day, we’re pretty excited about that right now.”
David’s treatment began quickly after diagnosis. His port was placed. Chemotherapy started. The family shifted, Jessica Marty said, from simply being parents to being parents and medical caregivers, trying to absorb treatment timelines, medications and test results.
The first phase went so smoothly, Jessica Marty said, that the family settled into a sense of comfort. Then came complications: two severe rounds of typhlitis, an inflammation of the intestine, that left David hospitalized and unable to eat by mouth for weeks at a time. He spent one birthday with no food, not even shaved ice, while receiving nutrition through an IV.
Later, his port ruptured and had to be replaced in emergency surgery. Illnesses that might pass quickly for other children lingered for David because his immune system was weakened by treatment.
Still, David kept finding ways to be himself. At the clinic, he performed magic tricks for other children. When he heard another child crying, Jessica Marty said, he asked a child life specialist whether that child needed someone to sing with them or simply sit nearby.
His family has learned not to call him brave. David rejects the word because, he says, he does not have a choice in what is happening to him. What he accepts is strength.
“He’s not brave,” Jessica Marty said. “He’s just doing what we tell him he has to do, but he is strong.”
That strength has been matched by the people around him. David’s older sister, Amelia, has had her own life reshaped by his diagnosis. Birthday plans, soccer games and visits with friends now depend on David’s health. She has missed social opportunities and has not had friends over since his diagnosis, Jessica Marty said.
But Amelia also has become one of David’s most important supporters. She distracts him during difficult hospital visits, pushes him to do what he can and offers the kind of encouragement that sounds different coming from a sister.
Dr. Laura Schuettpelz, David’s doctor and a pediatric oncologist who directs the pediatric leukemia and lymphoma clinical program at St. Louis Children’s Hospital, said B-cell ALL is the most common type of leukemia seen in children. Cure rates for children with B-cell leukemia are now about 90%, she said, a number that reflects decades of research and the arrival of newer therapies.
Those advances include immunotherapies and targeted treatments designed to attack leukemia cells more precisely than traditional chemotherapy. Schuettpelz said the goal is not only to cure more children but also to make treatment less burdensome and less toxic.
David’s course has shown why that matters. Schuettpelz said he has experienced many of the complications doctors hope future patients can avoid, including repeated hospitalizations and side effects from treatment. Even so, she described him as funny, smart and memorable.
Early in treatment, David rated cafeteria food and made a cheerful “survival guide” video for other children on the hospital’s ninth floor, pointing out the dogs, video games, child life staff and other parts of hospital life that made the hard days more bearable.
“He entertains everybody,” Schuettpelz said. “He just has a great attitude.”
For Jessica Marty, the story of childhood cancer is not only about medicine. It is about what she calls wraparound care: occupational therapy, physical therapy, music therapy, art therapy, child life specialists, family spaces and hospital gardens. Those supports, she said, have helped David remain a child while going through something no child should have to face.
His occupational therapist, Nicole, is often the person who can coax him out of his room when he is admitted, Jessica Marty said, because she meets him with patience, games and care.
“We would not be in the same boat if we didn’t have access to both the medical care and the wraparound services that are offered,” Jessica Marty said.
David is now entering maintenance, the long final phase of treatment. His cancer is essentially gone, Schuettpelz said, but continued low-dose chemotherapy is needed to reduce the risk that it comes back.
Jessica Marty pictures a different future: fewer hospital visits, more school, summer days spent swimming and trips to every water park and amusement park within a five-hour radius. David, she said, wants the roller coasters most of all.
She also wants people to understand that a childhood cancer story is not only a sad story. There is pain, fear and exhaustion, but there also is laughter in the clinic, music in hospital rooms and children who find ways to help one another through treatment.
“Cancer is not going to define them,” Jessica Marty said. “It’s not even going to be the biggest part of their story.”
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