Couple were experts on a form of childhood cancer. And then their infant was diagnosed with it

On his very first date with Priya Joshi, the woman who would become his wife, biomedical engineer Shashank Sirsi talked to her about his research studying neuroblastoma in children.

“Regularly thereafter we talked,” said Joshi, a Dallas internal medicine physician. “It was definitely something we discussed frequently.”

But never has this form of cancer, which begins in nerve tissue and affects one of every 7,000 births, gripped their conversations and directed their lives more than it has the last two years.

That’s because four months after their son, JD, was born in February 2020, he was diagnosed with neuroblastoma. He is that one in 7,000. That one of the 700 to 800 children diagnosed every year in North America, according to statistics from the American Society of Clinical Oncology.

That one of fewer than a dozen pediatric patients at UT Southwestern Medical Center Dallas who has the potentially fatal disease.

But more than any statistic, JD is their son. His diagnosis terrified them; his treatment intertwined their roles as parents and as scientific professionals. They knew statistics; they knew the depth of a love that surpasses words.

“Previously, I’d only worked with physicians, oncologists and researchers on neuroblastoma,” said Sirsi, assistant professor of bioengineering at the Erik Jonsson School of Engineering and Computer Science at the University of Texas at Dallas.

“My son was the first patient.”

A troubling find

That truth is head-shakingly ironic; the possibility of their son having the disease his father had spent a decade studying never occurred to them. Why would it? Joshi’s pregnancy and JD’s birth were perfectly normal. But when Joshi looked at a photo of JD the day he turned 3 months old, she noticed a lump and a shadow on his abdomen.

“I thought it was peculiar, so I forwarded it to my friend who’s a pediatrician. She suspected it would pass within 24 hours. When it didn’t, she suggested we seek immediate care.”

An ultrasound showed lesions on JD’s adrenal gland and his liver. Still, doctors reassured his parents, the growth appeared to be hemangioma, a usually benign vascular tumor. Hearing that news, Joshi remembers feeling immediate relief and crying tears of joy. But to verify the diagnosis, an MRI was scheduled and a urine sample taken — a screening test, Sirsi knew, for neuroblastoma.

The following day, the disease was confirmed.

“I received the phone call that changed our lives,” Joshi said. “I was devastated and incredulous that something so rare, something my husband was a scientific expert in researching, was something my baby had. Words can’t come close to describing the despair.”

Because the cancer had metastasized, manifesting itself into seven lesions on JD’s liver, it was diagnosed as Stage 4.

“That’s when things got real,” Sirsi said. “How is this possibly happening?”