Neuroblastoma Advanced Therapies Center

Patient Stories | Jeremy

Compassionate, Expert Care Makes the Difference in Jeremy’s Neuroblastoma Case

When Jeremy was a toddler, his family took him to Cincinnati Children’s for an ultrasound due to a distended stomach. Doctors found a tumor, and Jeremy was diagnosed with intermediate-risk neuroblastoma. Five months of treatment followed and today he’s a happy and healthy 8-year-old. 

Jeremy was a bouncy, energetic toddler. He was meeting milestones and saying lots of words, like “mama” and “dada,” “uh-oh” and “ball.” 

Then, in the fall of 2015, his mom, Lauren, noticed that Jeremy’s stomach seemed swollen. Some laughed it off as “cute.” Lauren wasn’t so sure and decided to share her concerns during Jeremy’s 15-month well-child appointment. 

The pediatrician couldn’t feel anything concerning during a manual exam, but told Lauren to bring Jeremy back the following month for a recheck.

During the second exam, Jeremy howled in pain when the pediatrician felt something unusual. Unsure what it was, she ordered X-rays and told Lauren and her husband, Mark, it was likely a case of impacted stool. They then took their son across the street to Cincinnati Children’s Anderson neighborhood location for X-rays.

That evening, Mark answered a call from the pediatrician. Lauren overhead the phrase “big mass.” She also heard that, whatever it was, it was outside of any organs. The pediatrician remained hopeful that it was impacted stool and scheduled Jeremy for an ultrasound the following day at Cincinnati Children’s.

Further Testing Leads to Cancer Diagnosis

When the family arrived at the hospital, they left Jeremy’s sippy cup in the car’s cup holder. It would remain there for the next five months. 

“It was almost a relic, frozen in time. It got to the point where I was scared to touch it,” said Lauren, who also left her purse in the car, figuring she would only need her wallet with her during the ultrasound. 

“We were there just to get confirmation that it was nothing sinister." 

The ultrasound, however, did not reveal impacted stool. It showed a mass that looked suspiciously like cancer, and Jeremy was admitted that afternoon for further scans. The next day, Lauren and Mark’s worst fear was confirmed: It was cancer. Specifically, stage 3 intermediate-risk neuroblastoma, a rare cancer that almost always affects children. 

Treating Jeremy’s Neuroblastoma

Each year in the United States, around 500 to 600 kids are diagnosed with neuroblastoma. Most are diagnosed when they’re young, around 1 to 4 years of age. 

Neuroblastoma tumors typically begin in the adrenal glands, which produce adrenalin—the fight-or-flight hormone—and are located on top of the kidneys. However, the cancer also can develop in or spread to other parts of the body, including the chest, spinal cord and abdomen. 

Treatment generally depends on the assessed risk posed by the tumor. Most kids like Jeremy with intermediate-risk neuroblastoma need a combination of chemotherapy and surgery.

Jeremy’s tumor was 11 centimeters (“the size of a softball,” said Lauren) and located in his abdomen, but the tumor had also wrapped itself around a blood vessel and grown into his spine.

Fortunately, Jeremy’s attending physician was Brian Weiss, MD, director of our Neuroblastoma Program. Dr. Weiss is a specialist with 25 years of experience treating kids with neuroblastoma and has a particular interest in researching novel therapies and targeted radiotherapies to treat it.

“I’m interested in the difference one can make in neuroblastoma,” said Dr. Weiss. “In certain types of cancer, one can’t move the needle as much in terms of treatments and outcomes. With neuroblastoma, you can.”

Dr. Weiss ordered six rounds of chemotherapy for Jeremy. He also told Lauren and Mark not to Google the word “neuroblastoma” because they might read information and statistics about other types of the disease not directly related to Jeremy’s specific case.

“He said, ‘Don’t do it. Don’t do that to yourself. If you have questions, ask me,’” said Lauren. “Spoiler alert: I looked it up a few weeks later and regretted it.”

“Very few parents take my advice when I say that, but I understand,” said Dr. Weiss. “I recognize what they’re going through and try to treat families the way I’d want to be treated if it was my child. That’s why I try to be available and am always honest, even when not delivering good news.”

Following the initial four rounds of chemotherapy, Jeremy then underwent a six-hour resection surgery in January 2016 to remove the tumor. Greg Tiao, MD, director of General and Thoracic Surgery, performed the successful surgery. Jeremy then completed his two final rounds of chemotherapy post-surgery.

“Dr. Weiss was compassionate and developed a great rapport with Jeremy,” said Lauren. “To have a doctor who cared and who was also world-renowned for neuroblastoma was just incredible. And Dr. Tiao never spoke over our heads or used medical jargon. He took the time to explain everything to us so we would understand.”

Counting Blessings, Thanking the Cincinnati Children’s Team

By March 2016, Jeremy’s scans showed no evidence of disease. Almost five months to the day since she’d left, Lauren returned to work. 

“I took FMLA, but my co-workers had also donated their PTO to me so that I had a full or partial paycheck over the course of those five months,” she said, recounting the numerous ways people showed up for her family during that time. “Jeremy’s preschool teachers bought us groceries and paid for someone to clean our house. They also bought us Christmas gifts. Blessings were dropping into our life from so many places.”

Lauren also credits the entire Cincinnati Children’s team for showing up—everyone from the Child Life specialists who helped distract Jeremy with bubbles, movies and games to the nurse who found Lauren on her knees outside his room crying one night and held her. 

“I cannot say enough about the nurses, doctors and support staff in the Cancer and Blood Diseases Institute,” she said. “They are truly special people. If they were ever having a bad day, you never knew it.”

Today, Jeremy is a typical 8-year-old. He’s in third grade and loves to read, play Minecraft, and spend time with his three younger siblings: 4-year-old brother, Miles, and 1-year-old twin sisters, Cassidy and Virginia. 

While he has no memory of his many visits to Cincinnati Children’s, Jeremy knows his story because Lauren kept a detailed blog of his five-month journey, which she self-published into two books and plans to give Jeremy when he’s older.

(Published February 2023)