Brain Cancer Researcher Stunned When His Own Baby Is Diagnosed With Same Disease He Studied For A Decade

According to the American Cancer Society, between 700 and 800 children are diagnosed with neuroblastoma every year. The family first realized something was wrong with J.D. when Dr. Sirsi's wife, Dr. Priya Joshi, discovered a lump on her three month old son's abdomen.

"We had to schedule an ultrasound appointment, then he had an ultrasound where they really clearly identified that he had masses on his liver and a primary mass on the adrenal gland," Dr. Sirsi said. One they identified these masses, J.D. had to undergo further testing. "He had some urine catecholamine test done. That was the kind of the defining test that came back and said this is neuroblastoma," his father said. "Our initial reaction was shock."

J.D.'s doctors could see that the cancer in his brain had already moved through his body to the liver. He would need to undergo chemotherapy. The chemotherapy treatment was one of the hardest parts for his parents to live through with him. It brought many of the side-effects commonly associated with chemo, like hair loss and nausea.

Discussing cancer with kids can be complicated – you want them to know what to expect, but at the same time, you want to be gentle.

The process was painful for his parents to watch, but J.D.'s prognosis was promising. "His prognosis is 95% of entry for survival after five years," Dr. Sirsi said. "That sounds great as a scientist. As a parent, you’re always thinking about what is that other 5%?”

J.D. is now in partial remission, and Dr. Sirsi has discovered a new level of compassion for the people suffering through the disease he studies. “Here are children that are not so lucky," he said. "There are more high-risk forms of the disease that are very deadly and what we are working on right now, the question is how do we treat these high-risk patients much better?”

Dr. Sirsi's academic mission to improve the treatment of neuroblastoma has become undeniably personal: "Would I give this [treatment] to my son? That is really the question that kind of governs our, research moving forward."

About Childhood Neuroblastoma

Neuroblastoma makes up about 6% of all pediatric cancers in the U.S.

The disease develops from nerve cells in the fetus, and often affects the small glands above the kidneys, called adrenal glands. Tumors are most often found in the abdomen, but they may also appear in the chest, neck, or spine. In some cases, this disease can actually disappear on its own, but many children will need surgery, chemotherapy or radiation treatment.

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Neuroblastoma may present different symptoms, but a child with an abdominal tumor may complain of bellyaches, weight loss, or abdominal swelling, or more general aches and pains.

Nearly half of neuroblastoma patients have “high-risk disease,” meaning that the cancer has has spread to other parts of the body. Treatment may include a combination of chemotherapy, surgery, and radiation therapy including proton therapy. It can also involve high-dose chemotherapy followed by a stem cell transplant. Immunotherapy, which uses the body's own immune system to fight the disease, is another tool doctors may use to fight neuroblastoma.

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