Sixteen-year-old Zach Swart of West Saugerties Road has been selected by the St. Baldrick’s Foundation as one of its five national ambassadors this year.
Of the 49 ambassadors chosen since 2006, Zach is the first to hail from New York. The three-time acute lymphoblastic leukemia survivor was given another chance at life this year when, thanks a trial of experimental CAR T cell immunotherapy treatments at Memorial Sloan Kettering Cancer Center in May and a bone marrow transplant from his older brother in June. The foundation will use Zach’s story as a vehicle to campaign for more funding for pediatric cancer which, according to St. Baldrick’s, only receives 4 percent of federal cancer research funding.
“Every year, the foundation selects five ambassadors to represent the thousands of kids touched by childhood cancer from many different geographic areas, age groups, disease types and more,” said Jane Hoppen, director of family relations at the St. Baldrick’s Foundation. “These brave kids serve as a reminder that childhood cancer doesn’t discriminate and that one in five kids diagnosed in the U.S. will not survive. St. Baldrick’s ambassadors and their families will act as spokespeople for the foundation in 2018. They will attend fundraising events and provide the public with an in-depth look into their lives for a year, helping raise awareness for the critical need of childhood cancer research.”
The Saugerties High student was first diagnosed on Nov. 28, 2007, at just six years old. He was taken to his pediatrician when his parents noticed that he bruised particularly easily and his blood work came back “very wrong.”
“When I was first diagnosed with cancer, I was 6 and I didn’t really feel too sick. Maybe a little tired,” he said. “I noticed bruising in weird spots and they wouldn’t go away. So that’s how I knew something was up.”
Too young to understand the severity of his situation, Zach began receiving biweekly chemotherapy treatments, spinal taps and oral pill treatments at Albany Medical Center for the next three and a half years. After a brief period of remission, his cancer returned again in June of 2012, when he was 11.
“You never expect to hear it the first time, the second time or the third time,” said Zach’s mother, Nancy Swart. “Every time is just [awful].”
Zach had to be in remission to receive the bone marrow transplant that his doctors said he needed; his recurring cancer proved resistant to chemotherapy, qualifying him for an experimental immunotherapy trial in May of 2017 run by Dr. Kevin Curran at Memorial Sloan Kettering. The technique, touted as “the future of cancer treatment,” involves removing T cells, a part of white blood cells, from Zach’s body and genetically modifying them over 10 days in a lab to be able to detect unwanted cancer cells. The T cells are then returned to the patient, where they seek out the cancer cells and destroy them. With typical chemotherapy needle pokes, both good and bad cells in the body are subject to removal; this new therapy focused only on the offending cancer cells.
“It’s different,” said Zach of the recovery period. “For awhile, I was waiting. They took my cells out and genetically engineered them. I came back after four week, and [although] we were forewarned there could be very intense side effects, I had [none].”
Although Zach switched facilities, his mother was grateful for the quality of care he received; once a special education teacher at Riccardi Elementary School and Saugerties High School, she changed her career path and studied at Columbia-Greene Community College for a nursing degree. She currently works at Albany Medical Center in its pediatrics center.
“The care that Zach received was exceptional,” she said. “I wanted to give back somehow. Healthcare is a team effort between the doctors, the nurses and the patients, and I wanted to be a part of it.”
Zach’s immunotherapy treatment worked; a month later, he received bone marrow this June from his eldest brother, Ben, who gave without hesitation.
“I’m still working my way back up to where I was, but everything is moving very well. I was hoping [to go back to school] in January and February, but hopefully I can come back to school some time [soon],” said Zach.
Zach’s journey has been well documented through the St. Baldrick’s website; in September of last year, he accepted the offer to be an ambassador. His mother has spoken on his behalf to members of Congress about the importance of specifically funding pediatric cancer treatment, and will be the subject of a television interview on March 11 at Westmere Fire House in Albany, representing the Melodies Clinic Team.
The family said they’re grateful to the community for their support throughout Zach’s struggle with leukemia; in 2015, a St. Baldrick’s head-shaving event in Saugerties raised $89,000. The community collected $107,000 for the cause this year. The family thanks the school system and local volunteer fire departments, which gave Zach a hero’s welcome in their trucks at the McDonald’s off the Thruway exit when he returned from his last treatment.
“Zach is very unique, having this type of cancer three times and still being here,” said Nancy. “I have never heard Zach complain and say ‘I missed this because of cancer.’ He’s never looked back or felt jaded — he just continues to push on and every day is a new day.”