A nurturing presence for Jersey children with terminal illnesses

Source: NJ.com
Anthony Thomas didn’t know much about Dr. James Oleske, a pediatric physician in Newark for 46 years. He probably didn’t catch that Oleske is a world-renowned pediatric infectious disease immunologist who discovered that infants could be infected with the HIV/AIDS virus at birth.
Dr. Oleske is the co-founder of Circle of Life Children’s Center, a palliative care program that helped Thomas’ family, and hundreds of families before them,  through the darkest hours in their lives — which for Thomas was when his 17-year-old granddaughter died after an unsuccessful bone marrow transplant.
He was drawn to end-of-life palliative care during the HIV/AIDS crisis, while treating children who had the disease. In his work at the former University of Medicine and Dentistry of New Jersey-New Jersey Medical School in Newark, Oleske says care didn’t exist for children were dying as a result of  HIV/AIDS complications or other terminal diseases.

“I didn’t realize how important it was to give pain management,” Dr. Oleske says. “I didn’t realize how important it was to not only try to treat the disease as best as you can, but to understand how you care for a child or adolescent with a fatal disease.”

As the number of new HIV/AIDs cases declined since the 1980s, Oleske became certified in palliative care and started Circle of Life in 2002 with Lynn Czarniecki, a former pediatric nurse, and others. The program is now at Rutgers New Jersey Medical School in Newark and at Magnolia House, a facility in Elizabeth where families can receive bereavement counseling and other support.
Since its inception, Circle of Life primarily serves low-income and underserved families in the greater Newark area, which Oleske has called home since he started his career in the city. “I saw Newark as the place where I could do the most good,” he says.
Executive Director Samuel Varsano says the organization survives on donations, but more funds are needed to cover costs that Medicare won’t pick up. “What makes this even more difficult and harder to understand is that, wherever you are in New Jersey, everyone understands that if you have an adult in your family who develops a terminal illness, we all automatically turn to an extremely wonderful option called hospice,” Varsano says.

“Hospice is recognized and largely funded by Medicare. Medicare does not have a similar program for palliative pediatrics.”

Last year, Varsano says Circle of Life provided palliative care to 180 children, mostly in Newark, and bereavement support to 65 families whose children eventually died. Since 2006, they’ve cared for 600 terminally ill infants, children and families with a network of social workers who go to homes, hospitals and wherever else they’re needed.
Though a year has passed, Circle of Life is still involved with Anthony Thomas. “Do what you can do to make it stronger,” he told Dr. Oleske, speaking of the organization.
Don’t worry. He and the staff will.

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