Parker Shaw: Advocating for Cutting-Edge Research to Treat Neuroblastoma

A Message From Dave and Crystal Shaw, Parker’s Parents

Parker was a typical 6-year-old boy with boundless energy, whether he was scootering down the street, riding his bike, or swinging from tree branches. One day in March 2013, at a birthday party, Parker and his friends were swinging on the branch of a tree when the branch gave way. He fell, hitting the back of his left hip on a stump. Although he complained about the bruise, Crystal, who is a nurse, didn’t think much of it and Parker continued to scooter around and play as usual. But over the next 2 weeks, something began to change.

Parker started complaining more frequently about pain in his hip, sometimes pointing to his abdomen instead. Despite the pain, Parker remained active. Crystal, concerned but not overly alarmed, chalked it up to growing pains, something she had heard other moms talk about.

It wasn’t until after spring break, when Parker’s teacher mentioned that he wasn’t acting like himself, that Crystal decided to take him to the doctor. She thought maybe Parker had an infection in his hip bone. The doctor agreed with her and sent them to the hospital.

During the trip to the hospital, Parker had a high fever and was unusually quiet. They completed lab work and an X-ray, then returned home. That night, Crystal received a call from the pediatrician. While the X-ray was normal, Parker’s laboratory results were not. The markers of inflammation or infection were 10 times the normal levels. The doctor recommended a CT scan and said if Parker’s condition worsened to go to the hospital to speed up the scan.

The next morning, Parker woke up screaming in pain, unable to walk. Crystal rushed him to the ER, where Parker was given an MRI to limit his radiation exposure.

After the scan, the mood of the hospital staff shifted. Crystal was approached by a visibly upset doctor, joined by a social worker, who revealed a mass was found on Parker’s left kidney. “And my nurse brain just started jogging all the things; what could this be?” The doctor suspected Parker had neuroblastoma.

In the days that followed, Crystal and Dave were engulfed in a whirlwind of emotions—anger, confusion, fear. But they had to be strong, not just for Parker, but for their whole family.

Tests confirmed that Parker’s cancer had spread to 87 percent of his bone marrow, with metastases throughout his body. The prognosis was poor. Crystal and Dave researched neuroblastoma, joined support groups, and consulted with other parents. Eventually, they made the difficult decision to move their family from San Diego to New York, where a specialized team of doctors at the top of their field in neuroblastoma could provide the best possible care.

Parker underwent several rounds of chemotherapy followed by surgery to remove the tumor. The surgery lasted over 10 hours and the road to recovery was long and painful. Parker was resilient. He next underwent additional chemotherapy followed by an experimental immunotherapy known as natural killer cell therapy, along with an investigational treatment, naxitamab.

After 10 rounds of immunotherapy followed by radiation, Parker’s condition finally began to improve. “On January 10, 2014, for the first time, Parker reached NED status, which means no evidence of disease. He was cancer free,” Crystal said. Encouraged by Parker’s response to the investigational treatment, Dave and Crystal pursued another clinical trial of eflornithine to reduce the risk of relapse.

Eflornithine has been effective for Parker. Now 17, Parker is thriving. Their experience with cancer led Dave and Crystal to start a foundation called Team Parker for Life. “We raise money for clinical research and to date have raised $1.875 million. We also help kids and their families across the United States so they do not have to worry about paying the next house payment or for their car and gas,” Dave said.

Crystal and Dave underscore the importance of funding cancer research, especially for childhood cancers, which receive only a small fraction of the overall budget. “More investment in cutting-edge, less toxic treatments is crucial—not just for Parker, but for the future of all children battling cancer,” they said.