“Everything Has Changed”: West Babylon Rallies As 17-Month-Old Battles Leukemia

WEST BABYLON, NY — For lifelong West Babylon resident Jenna Berry, 36, time stopped around Labor Day weekend. Since late August, her days have blurred into hospital rooms, IV lines, chemotherapy schedules, and long conversations with doctors about her 1-year-old son, Jackson, now 17 months old, who was diagnosed with acute myeloid leukemia (AML) just weeks after his first birthday.

On Wednesday, Dec. 17, East Neck Nursing and Rehabilitation Center in West Babylon plans to host a holiday fundraiser for the Berry family from 3:30 to 7:30 p.m., an event organizers say is meant to bring the community together while helping the family shoulder the costs and strain associated with long-term pediatric cancer treatment, including travel, medical expenses, and time away from work.

“Everything has changed,” Berry told Patch, describing the shock of pivoting from a normal routine with a healthy toddler to living around appointments. “Now I’m a full-time stay-at-home mom, just to care for him — 24/7. … Going from taking care of a normal, healthy child to living in the hospital or going to doctor’s appointments — it’s just a complete turn. It’s difficult adjusting.”

Jackson’s leukemia diagnosis came suddenly, after what initially appeared to be a routine childhood illness.

In late August, Berry noticed her son wasn’t eating solid foods and seemed unusually lethargic — a sharp contrast to his normal behavior. “As soon as this kid opens his eyes in the morning, he’s running,” she said. “So when he wasn’t, I knew something was off.”

A pediatrician visit pointed to teething and a possible viral illness, but Berry’s instincts told her something more serious was happening. When Jackson stopped drinking from a bottle, she began feeding him formula and water by syringe. Shortly after, she drove him to Stony Brook University Hospital’s emergency room.

“They took us right into the ER and said he had no blood,” she recalled. “I started laughing — not because I thought it was funny — but because I didn’t understand. I was like, ‘Where’s the vampire? What do you mean he has no blood?’ I didn’t even know how that worked.”

Doctors soon confirmed her son had AML, and Jackson was transferred to the intensive care unit, where he received multiple blood transfusions before starting chemotherapy almost immediately.

“They mentioned the word leukemia, but I didn’t even realize it was cancer until we were upstairs in the ICU,” Berry said. “They were prepping him for transfusions, and then they started saying cancer. My husband left work and came straight to the hospital. We were just like, ‘How is this happening?’”

Before Jackson’s diagnosis, Berry worked full-time as an administrative assistant at an HVAC company. Since that day in August, her life has shifted entirely.

“I went from working full-time to being a stay-at-home mom overnight,” she said. “Everything changed. Going from taking care of a normal, healthy child to living in the hospital, going to doctors’ appointments constantly — it’s a complete turn. It’s just hard.”

Paid family leave and Family and Medical Leave Act protections quickly ran out, and Berry said returning to full-time work may not be possible for the foreseeable future.

“Even after the transplant, we’ll be going back and forth between Columbia [University Irving Medical Center] and Stony Brook [University Medical Center] for months,” she said. “One day I’ll be driving an hour west, another day 40 minutes east. There’s bloodwork, follow-ups, testing — there’s no timeline. It could be six months. It could be a year.”

Doctors are working toward a bone marrow transplant once Jackson’s leukemia is fully cleared, a process that has required multiple rounds of chemotherapy and constant monitoring.

Her husband, Shaun Berry, works for the Town of Brookhaven Highway Department and has continued working while supporting his family through the ordeal.

“There’s no real preparation for any of this,” Jenna Berry said. “You just wake up and go into survival mode. What does he need today? What do we have to do for him? You don’t really have a choice.”

Courtney Webb, who works at East Neck Nursing & Rehab, said she has known Berry since childhood. The Holiday Cheer Pie Grab & Go fundraiser will include a Chinese auction, photos with Santa, letters to Santa, kids’ activities, and Christmas carolers — whom Webb noted are also West Babylon alumni. The goal, she said, is to create a welcoming holiday atmosphere while raising money that will go directly to the family.

“All money that will be raised will be going directly to that family while they’re going through this trying time,” Webb said.

Berry said she was first approached by Webb — someone she has known since elementary school — before the event was publicly announced. Knowing that people, including some she has never met, are coming together for her son has been deeply emotional.

“It’s a lot, not in a bad way,” Berry said. “Everything is overwhelming already, and then you see people trying to help, donating, saying kind things. It’s really nice to see people being people again. We’re very grateful, my husband and I. It’s overwhelming in a good way, but I’m still processing it all.”

For Berry, community support doesn’t always need to be grand gestures. She said simply showing up for families going through childhood cancer can make a real difference. Asked what keeps her hopeful, Berry didn’t hesitate.

“Jackson,” she said. “I look at him, and I’ll make sure nothing ever happens to him. Obviously, this is out of my hands — I couldn’t prevent leukemia — but I’ll make damn sure he gets every treatment he needs, and everything goes according to plan as best as it can.”

Event details and how to help

What: Holiday Cheer Pie Grab & Go Fundraiser (benefiting the Berry family)
When: Wednesday, Dec. 17, 3:30 p.m. to 7:30 p.m.
Where: East Neck Nursing and Rehabilitation Center, West Babylon
Highlights: Chinese auction, photos with Santa, letters to Santa, kids’ activities, Christmas carolers, and more.
More info/donations: Courtney Webb — (631) 316-5884 or cwebb@cassenacare.com