A Suffolk County judge ruled Friday that a family friend can assume custody of a 13-year-old boy who has a rare form of leukemia and for weeks has been the subject of a bitter tug-of-war between his mother and local authorities.
Nicholas Gundersen has been in NYU Winthrop Hospital in Mineola undergoing court-ordered chemotherapy for an aggressive and potentially deadly blood cancer known as mixed phenotype acute leukemia. He now is scheduled to be discharged, his mother, Candace Gundersen, said following a court hearing Friday.
The boy, who is to continue chemotherapy as an outpatient, has been at the epicenter of a medical drama that has been unfolding for months in Suffolk courtrooms and two major hospitals. He is deemed to be in remission, but still requires treatment, according to his doctors.
Suffolk County’s Child Protective Services assumed legal responsibility for the boy in September after a Family Court judge ordered cancer treatment. The boy's mother prefers "nontoxic" alternative care, such as healthy foods, juices and supplements.
Gundersen was distraught Friday following the ruling by Family Court Judge Matthew G. Hughes in Central Islip. She said the case goes back to court in December.
"I am not happy. I was not given an opportunity to have him returned to me," Gundersen said following the judge's decision.
Nicholas and Gundersen will live in the Huntington home of Sarah Murphy, a friend of Gundersen's who has been awarded custodial responsibility of Nicholas. Murphy has agreed to abide by doctors' orders regarding the boy's cancer therapy, said Elliot Schlissel, Gundersen's lawyer.
"The boy is in remission, and adults in situations of this nature are allowed to opt out of chemo. In other countries, there are all kinds of alternative therapies that are used," Schlissel said. "As long as he is in remission, my client does not want to continue chemo."
Schlissel described Gundersen as a wonderful person and said her parental rights should be honored.
"My son is being damaged right now. He's receiving cancer treatment that he doesn't need. He doesn't have any cancer in his body now. And there's nothing more infuriating than watching this happen before my very eyes," Gundersen said.
Doctors have prescribed three years of treatment for the boy's form of leukemia, which conforms with same type of regimen followed by medical experts at St. Jude Children's Research Hospital, which has treated numerous youngsters with the rare blood cancer.
“I don’t understand how they can mandate a treatment, and they tell you that you don’t have a choice,” said Gundersen, who moved from Huntington to Florida in October to pursue alternative therapy near Tampa. She acknowledged that the practitioner was not an oncologist.
Nicholas initially was diagnosed in June at Cohen Children’s Medical Center in New Hyde Park. Gundersen has accused the medical center of misdiagnosis and prescribing the wrong treatment.
She additionally has accused Child Protective Services of “medical kidnapping” and forcing her son to undergo chemo. She compared her situation with that of other families in the country who she said rejected chemotherapy for children diagnosed with cancer.
In August, an 18-year-old girl treated at the Mayo Clinic in Minnesota accused the world-famous facility of medical kidnapping and requiring chemotherapy.
Suffolk County’s Child Protective Services, a division of the Department of Social Services, ordered the boy’s return to Long Island for cancer treatment, said Gundersen, who asserts they were "extradited" back to New York.
In a statement, Dennis Nowak, acting commissioner of the Suffolk County Department of Social Services, said CPS proceeded in accordance with the Family Court order. New York Public Health Law allows agencies, such as CPS, to act in the best interest of children when their lives are determined to be at risk.
Gundersen said the agency has interfered with her role as a parent.
“What happened to my parental rights? They’re trampling on my civil rights and human rights," she said. "Then there is the voice of my son. He doesn’t want this.”
Specialists at both Long Island hospitals who have treated Nicholas diagnosed mixed phenotype acute leukemia — MPAL — a form of the disease marked by two types of leukemia, acute myeloid leukemia and acute lymphoblastic leukemia.
The disease is a rare type of cancer that, like all forms of leukemia, develops in the bone marrow. With proper treatment, MPAL has a survival rate of 50 percent to 75 percent past five years, according to the National Cancer Institute. Schlissel said the child has only a 50 percent chance to live.
Studies, however, show that treatment outcomes are better for children than adults.
In addition to being told that Nicholas is in remission, Gundersen said her son was given “a clean bill of health.” She has interpreted “remission” to mean that her son doesn’t need chemotherapy. NYU Winthrop disagrees.
“It has been clear for at least 20 years that the state of remission, at least in its initial stages, does not mean a clean bill of health,” Edmund Keating, spokesman for NYU Winthrop, said in a statement.
“It simply means that cancer cells are not detectable but remain within the blood in small amounts. However, unless chemotherapy is continued, those cells can once again multiply, and the results are usually fatal,” Keating said.
He added that the standard of care for MPAL calls for a regimen of chemotherapy over several years to reduce the risk of recurrence and having the cancer morph into an even more aggressive form.
"Literally thousands of children in the U.S. have benefitted from this treatment and are now living healthy and normal lives," Keating said.
Cohen Children’s Medical Center issued a statement and underscored that Nicholas received proper care for his disease.
“Because of patient privacy, we can’t comment specifically on this case, other than to say that he was accurately diagnosed and provided appropriate treatment at Cohen Children’s Medical Center, and that we hope Nicholas receives the treatment he needs,” said Terry Lynam, spokesman for the medical center, a division of the Northwell Health system.