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Ezra Hengst

  • Neuroblastoma

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Ezra is a 7-year-old sweetheart. He loves being around people and playing with friends whenever he can. He’s a wonderfully curious kid, always trying to figure out how things work. His friends love his silliness, and although he tends to be more reserved than his sister, he feels everything deeply. He loves to help others, which is fitting, considering that his name means “help” or “helper.”

Shortly after his 2nd birthday, Ezra started experiencing discomfort while playing. He stopped climbing and struggled to bend over to pick up his toys. His parents knew something was off, and their pediatrician referred them to the hospital for an ultrasound. The results were unclear. After more testing and more difficulty walking, Ezra’s pediatrician eventually ordered more bloodwork that uncovered a dramatic decrease in his hemoglobin levels. They chose to go to Arnold Palmer Hospital in Orlando, Florida this time, and soon learned that Ezra had stage IV neuroblastoma. An MRI revealed a tumor above his left kidney and multiple lesions across his spine, pelvis, arms and legs.

The first six months of treatment were intense, resulting in harsh side effects. Even after a tumor resection, two stem cell transplants and proton therapy radiation, Ezra had a pea-sized area of relapse in his arm. His doctors changed course to six cycles of a combination chemotherapy and immunotherapy but had to discontinue due to a lack of progress. He transferred to Children’s Healthcare Atlanta for IV radiation – but still showed very little change.

Even an antibody treatment at Memorial Sloan Kettering in New York proved not to be worth the risk of continuing. Thankfully, Ezra moved toward remission treatment after the first two rounds and found a vaccine for neuroblastoma that allowed him to travel home between treatments. He’s finally completed the series of shots and will get a PET scan every few months to monitor his health.

Today, Ezra’s family is so grateful to see him beating cancer! Ezra is his parents’ hero because despite all the adversity he has faced, he remains such a sweet spirit. He inspires them every day with his empathy and compassion. He is thriving at school alongside his friends who buzzed their hair to support him. His family hopes that in the future Ezra will use his intelligence to help those around him and that he may come to know God in the process.

Ezra’s mom, Brittany, would like to encourage other families facing a similar diagnosis not to shy away from asking for help. “We were made for community, and everyone needs help from time to time,” she says. It was a difficult road for their family, but asking a social worker for information helped a ton. They found help with finances, travel expenses, mental health, sibling support, activities, and more. Plus, their church helped tremendously. Through prayer, encouragement and lending a hand with things like mowing the lawn or repairing things at home, it felt like they had a “second family.”

Alex’s Lemonade Stand Foundation (ALSF) proved to be a valuable resource for Ezra’s family as well with support from the Travel For Care program. Traveling between Florida and Atlanta – now, Florida and New York – has not been easy but as Brittany says, “Every time we’ve received support, it always feels like a huge weight has been lifted.” They’re glad that ALSF could be an outlet of hope and encouragement for their family as Ezra continues to overcome cancer.

Information provided by Brittany Hengst, Ezra’s mom
Updated April 2023

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