FAMILY TIES

The initial signs that something might be wrong with Tiffany and Gregory’s youngest daughter, Liliana, were subtle. Lethargy, paleness and a frequent desire to be held by her father seemed like a natural reaction to Gregory’s return home after a long deployment with the Navy. But when swelling in Liliana’s abdomen appeared and bath water running over her legs elicited cries of pain, they knew it might be something more.

They went from the pediatrician straight to the emergency room at Wolfson Children’s Hospital. More tests confirmed that the toddler had acute lymphoblastic leukemia. Tiffany, a former nurse who left her job during her high-risk pregnancy with Liliana, knew the road ahead with a severely ill child was going to be tough. Debilitating chemotherapy, surgeries and painful procedures awaited three-year-old Liliana.

It has been more than two years since that dreadful day, and Tiffany has chronicled Liliana’s story on a Facebook page. It is important to Tiffany for people to understand the “real” face of pediatric cancer.

“It isn’t pretty and it isn’t comfortable to look at it,” said Tiffany. “But it is honest and my goal is to educate other families on what it is really like to have a child with cancer.”

Throughout the past two years, Liliana’s treatment schedule has been brutal on the entire family. Liliana has experienced a multitude of complications, including toxicity from the chemotherapy that has caused permanent damage to her pancreas and adrenal glands. Her compromised immune system has left her struggling through bouts of COVID, RSV, pneumonia, and the flu. Halloween, Thanksgiving and Christmas holidays have been spent inside the walls of the hospital and without the comfort of her four siblings.

Gregory, a Senior Chief and electrician in the Navy, has spent more than half of the past two years on deployment and away from his family. While Tiffany cares for the daily needs of Liliana, she also juggles the schedules of her four other children: Ryanne, 13; Brody, 12; Noah, 10; and Enzo, 4. The worry and stress on this family is simply incomprehensible.

“Liliana’s cancer has taken an enormous emotional toll on every member of the family,” said Tiffany. “My other children are deeply worried about their sister, and it causes all of us great anxiety.”

The older children have attended Jay Fund programming for siblings and Tiffany reports that those outings are the only time her children feel understood. “The bonds my children have developed with other kids who have a sibling with cancer will never be broken.”

What many people don’t fully appreciate are the hidden costs of having a child with cancer. Tiffany spends countless hours driving back and forth to the hospital. The cost of gasoline and wear and tear on the car are a significant financial burden. “At one point both of our cars were broken down. The Jay Fund stepped in and replaced four tires on one car and the brakes on our other car,” she said. “Their auto maintenance program has really helped us with gas cards and making sure we have safe and reliable transportation to the hospital.”

Liliana received her last round of chemotherapy in January, but Tiffany knows her daughter’s cancer will impact the family far beyond the end of treatment. Gregory recently left on a two-and-a-half-year deployment to Japan and Tiffany will once again be managing the busy schedules of five children, while working to restore her daughter’s health and spirit.

The Jay Fund will continue to BE THERE for this family and others throughout the community, providing financial and emotional support to help them navigate the road ahead. Through meal deliveries, financial assistance with household bills and social support programs for parents, siblings and patients, we show families tackling pediatric cancer we will be there for them at all stages of treatment. Our thanks go out to the Jacksonville community. Through events like the Wine Tasting Gala and generous gifts, the Jay Fund can continue to help families through every stage of their childhood cancer journey.