Marc Weinstein, 10, who has the HLH blood disorder, is recovering from a bone marrow transplant that is giving him a new shot at life. Photo courtesy Barry Weinstein
May 20, 2008
Marc Weinstein won a major round in his fight against a life-threatening disease.
Marc, who celebrated his 10th birthday on March 25, underwent a bone marrow transplant on April 1 at Morgan Stanley Children’s Hospital at New York Columbia Presbyterian Medical Center in New York City.
Physicians hope the procedure will help him survive hemophagocytic lympho histiocytosis (HLH), a rare auto-recessive genetic disorder that affects approximately 1.2 out of one million newborns.
Doctors expected Marc to remain hospitalized for three or four months after the transplant, but he returned home after only 36 days in the hospital.
“He amazed all of us, and I can’t help but think that the prayers of so many people helped Marc come through this,” Barry Weinstein, Marc’s father, told NJ Jewish News. “We all know there’s a long road ahead, but we’re going to take it one day at a time. Our boy is a bright light.”
Marc, who lives with his father; mother, Cindy; and five-year-old brother, Robby, in Morganville, was diagnosed with HLH when he was 14 months old. Since the diagnosis, Marc has undergone countless diagnostic and blood tests, injections, and medicinal therapies, including chemotherapy, immune suppression, and anti-seizure drugs, in an effort to combat the disease.
But in January, it became necessary for his parents to consider one more option — a bone marrow transplant.
“The pre- and post-transplant stages are really rough, and we dreaded having to put Marc through this,” said Weinstein. “We hoped it wouldn’t be necessary, but his mother, Cindy; myself; and the medical team realized he couldn’t survive without it. We feared this procedure so much — and now we’re past it and Marc is home.”
Since the beginning of the year, more than 4,000 potential bone marrow donors, including hundreds of Monmouth County residents, participated in bone marrow registry drives that were conducted on Marc’s behalf, Weinstein said.
Separate bone marrow registry drives were organized throughout February by Marc’s school, the Solomon Schechter Day School of Greater Monmouth County in Marlboro; the Marlboro Jewish Center/Congregation Ohev Shalom; Temple Rodeph Torah in Marlboro; and the Jewish Federation of Monmouth County in Deal in an effort to find a match.
Prior to the bone marrow registry drives, many people from throughout the county had already ordered home testing kits from the Gift of Life Bone Marrow Foundation, which is North America’s largest Jewish marrow donor and umbilical cord registry, Weinstein said.
And although the eventual match came from another source, the 4,000 names have been added to the National Bone Marrow Registry and represent 4,000 miracles, Weinstein said.
“Those thousands of people in the registry are God’s miracles,” he said. “People from everywhere have helped and supported us with the best of intentions. Cindy and I are so touched by the outpouring of concern from the Jewish and general communities. People from all over the country have been there for us.”
In fact, the publicity, including media coverage, e-mail alerts, and postal mailings, that were generated on Marc’s behalf traveled far beyond Monmouth County. Residents from throughout New Jersey, along with other interested persons from New York, Florida, Illinois, Michigan, Maryland, New Mexico, Pennsylvania, and Texas, either acquired home testing kits or participated in bone marrow registry drives for Marc.
The family also has received inquiries from private citizens and organizations in Israel, Weinstein said.
There were some tough times immediately following the transplant, Weinstein said. Marc’s white cell count dropped to dangerously low levels, some of the strong antibiotics caused serious stomach problems, he development intermittent fevers, and also suffered from inflammations and ulcerations in his mucus membranes that necessitated pain management.
“Those days were extremely difficult for Marc,” said Weinstein. “He still has to take 10 different drugs and blood products, like platelets, every day. But by the middle of April, we found out that the newly implanted cells had started to take hold and will multiply to form a new immune system. Needless to say, we’re excited, yet cautious, because we know the journey has really just begun. We continue to pray and have faith each and every day.”
Marc’s illness is not the first time his family has coped with HLH. His younger brother Ross died from HLH shortly before his second birthday in 2002. Ross was diagnosed before Marc (Robby does not have the disorder).
But now there is new hope for Marc, and the family is filled with gratitude.
“His care is far from over and we have to remain vigilant against any infection that could derail his new immune system,” said Weinstein. “But our hearts are filled with gratitude, and words can’t express how we feel. Everywhere we go, people know our story and embrace us. We are forever thankful and we respect the goodness in all people.”
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