This article originally appeared on the Boston Children's Thriving blog.
In some ways, Katelyn Silva and Joe Lauzon are typical first-time parents. They bombard their newborn son Joey’s doctor with questions:
And people they meet are sharing pictures of their son.
The difference is that Katelyn and Joe are asking an oncologist, Suzanne Shusterman, MD, of Dana-Farber/Boston Children’s Cancer and Blood Disorder Center, their questions, and Joey’s baby pictures are x-rays and MRI exams shared among a team of physicians.
Having a baby is tough
“Having a baby is tough. Having a baby with cancer is tougher,” says Katelyn, who gave birth to Joey on January 12, 2014 at South Shore Hospital.
Joey had aspirated meconium during his birth and had trouble breathing, so he was transferred to the neonatal intensive care unit (NICU) to stabilize his condition. A chest x-ray revealed a mass, but it seemed like a normal finding.
“In newborns, the thymus gland can be large, so the initial interpretation was plausible,” explains Kirsten Ecklund, MD, clinical vice-chair of Boston Children’s Department of Radiology.
But after four days in the NICU, Joey showed no signs of improvement. The neonatologist at South Shore Hospital ordered another chest x-ray and requested a consultation from Boston Children’s Radiology Department.
The two hospitals are connected by lifeIMAGE, a radiology image-sharing service that allows hospitals to electronically share x-rays and other radiology exams. That meant Ecklund could review Joey’s chest x-rays immediately, instead of waiting hours or longer for the images.
“When I looked at the images, I felt this was a pretty worrisome finding. There were subtle changes in his ribs, and his trachea was displaced and narrowed, which suggested the mass had been there for a long time,” says Ecklund. She recommended transfer to Boston Children’s NICU.
“Our South Shore team did a wonderful job, but we were so happy to go to Boston Children’s, because we knew they could figure out whatever it was,” says Katelyn.
The diagnosis: neuroblastoma
The next day Joey underwent a series of tests, including a CT, MRI and finally a biopsy, which showed his liver was enlarged, a common finding in neuroblastoma. Although it is a very rare cancer, neuroblastoma is the most common tumor in infants. Joey’s presentation didn’t fit the typical case, says Shusterman. “Neuroblastoma is about the last diagnosis we would expect in a baby with respiratory distress.”
That night, an oncologist confirmed Joey’s diagnosis—stage 4 neuroblastoma. A tumor the size of an adult fist was pushing on Joey’s spine. He started chemotherapy right away.
“We were upset about the diagnosis and also relieved that they decided to treat Joey right away,” says Katelyn.
Joey spent five weeks in the Boston Children’s NICU, receiving his first two rounds of chemotherapy.
By the end of February, Katelyn and Joe brought their son home. For the next several weeks, Joey received weekly outpatient chemotherapy at Dana-Farber’s Jimmy Fund Clinic.
Joey’s oncology team had prepped Katelyn and Joe for the possibility of up to eight rounds of chemotherapy, possibly followed by surgery to remove the remaining tumor.
But Joey has been a stellar patient, responding very well to his treatment.
A full-body MRI scan at the end of March showed that his tumor had nearly disappeared. A follow-up MIBG scan, a nuclear imaging test used to locate certain types of tumors, indicated that Joey could graduate from chemotherapy.
“We’ll continue to follow him closely, and now Joey and his parents can get back to normal baby things,” says Shusterman.
We were the first hospital in New England to offer MIBG therapy to treat neuroblastoma and currently one of only a handful of hospitals in the country to provide this therapy.
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