Fundraiser collects $25,000 for Oceanside toddler diagnosed with leukemia

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When Stephanie Lipsky and her husband, Rob, got the doctor’s call last November, the Oceanside couple were blindsided.

“It was terrifying,” she said. “You hear cancer, and you think that’s it.”

Her now 21-month-old son Tyler, who had undergone a bone marrow procedure, had been diagnosed with acute myeloid leukemia, or AML, a disease in which abnormal white blood cells produced in the bone marrow crowd out the normal ones, making it difficult for the patient to fight off infection. Though much more common in adults, about 500 children have AML in the United States, according to St. Jude Children’s Research Hospital.

After enduring four rounds of chemotherapy — his last coming earlier this month — Tyler is now cancer-free. But high relapse rates — AML returns in about 20 percent of cases — still have the Lipskys concerned.

“As happy as we are that he’s in remission, that fear I don’t think is ever going to really truly leave,” Stephanie said.

Last summer, Tyler had a high fever that lasted nearly two weeks. Blood work done by his pediatrician found that he had low iron levels. After he was prescribed an iron supplement for three months, Tyler still showed a deficiency, and the pediatrician referred the family to a doctor at Winthrop University Hospital in Mineola, where he was diagnosed.

“It was just such a primal feeling of fear, not knowing what was going to happen and how he was going to get through this,” Lipsky recalled, “and honestly, we still don’t know if he will get through this.”

When Julia Kaplan, Stephanie’s cousin, learned of the diagnosis, she wanted to help. Kaplan is familiar with childhood cancer, having met some of those struggling with it while working with an organization at Colgate University — where she is a student — that raises money for St. Jude. But hearing about Tyler was heartbreaking in a different way.

“It’s just never really the same when it’s someone in your family,” Kaplan said. “You never want to hear that.”

During her winter break in December, Kaplan decided to use her fundraising experience to organize an event to offset the expenses that the Lipskys face for Tyler’s treatment.

She solicited donations by going door to door to businesses in Syosset, her hometown, as well as to many in Oceanside, Long Beach, Rockville Centre and Cedarhurst. “I literally went everywhere,” she said. Kaplan said she showed people a picture of Tyler and told them his story. Friends and family also helped, and Kaplan and the Lipsky family collected 35 raffle prizes and 30 auction items for a fundraiser at Mulcahey’s Pub and Concert Hall in Wantagh last Saturday.

More than 200 people attended the event, Kaplan said, and more than $25,000 had been raised as of Monday, when the Herald went to press.

“In addition to the money, it’s also about showing support,” Kaplan said. “I can’t even imagine what it’s like for Stephanie and Rob to be in the hospital all the time, and it’s just nice to see so many coming out to be there for you.”

Lispky started a “Being Tough For Tyler” Facebook page after his diagnosis to handle family members’ and friends’ inquiries on how they could help. Through the page, the family sold tickets and “#TeamTyler” T-shirts for two months leading up to the event.

The expenses continue. Stephanie remained in the hospital last week with Tyler, who got an infection from his last round of high-dose chemotherapy. Throughout the past few months, she has spent days and nights by his bedside, essentially moving into the hospital. The family has made the room as cozy as possible. “Everyone stares at me as I walk through the lobby holding my high chair,” she laughed. Tyler went home in between treatments, she added, and has remained happy and playful through the process.

Aside from the most recent fundraiser support, Lipsky said parents of classmates of her other son, Hunter, 4, have helped provide home-cooked meals for him and Rob while Stephanie stays with Tyler.

“I don’t know what we would have done without our friends and everyone that’s been around us,” she said. “Even people we didn’t know. My husband even said that it really restored his faith in humanity when he saw all of these people … donating their time and money and resources.”

Though he is in remission, Tyler has had trouble using his legs, and his mother said she is hopeful he will begin intensive physical therapy next month. But, she is not looking too far ahead: Through this experience, she said, she has learned to live day by day.

“You can’t think … where are we going to be in a month or where are we going to be in a year?” she said. “You just have to live every minute and every day. Just getting through that day, and knowing that he’s healthy and happy and smiling and playful.”

For information on how to donate, contact Kaplan at beingtoughfortyler@gmail.com