Girl Complains of Tooth Pain, Then Mom Hears Every Parent’s Worst Nightmare - Newsweek

A Connecticut mom's concern over her 4-year-old daughter Elena’s toothache soon turned into every parent's worst nightmare.

Sarah Lappostato, 35, started to notice some swelling behind Elena’s lower-left molar.

"My initial thought was that she had a tooth coming in, but that didn’t make sense because she had all of her baby teeth already," Lappostato told Newsweek. "Then I thought maybe there was some sort of infection happening."

Lappostato, who shares Elena and 7-year-old Flora with husband Antonino, 37, called the pediatrician first thing in the morning to discuss whether her daughter’s tooth pain needed to be evaluated.

The nurse advised Sarah to take Elena to the dentist where she had an X-ray on the same day.

The X-rays showed a pocket of debris, such as crunchy food that had been stuck under Elena’s gums, and the family was referred to an oral surgeon.

"The oral surgeon was not concerned," Sarah explained. "He agreed it could be a pocket of debris or perhaps a dentigerous cyst. He told us to watch for any changes and follow up in six weeks."

Meanwhile, Elena continued to play soccer and enjoy hikes with her family, but the mouth pain persisted.

Sarah noticed that she was also tired all the time.

The fatigue concerned Sarah, but because Elena had received her flu shot earlier that week, during another phone call to the nurse the fatigue was put down to a reaction to the vaccine.

However, Elena was so tired that Sarah couldn’t get her out of bed. She had also developed unexplained bruising around her eyes.

"I knew something more was happening," Sarah said. "I called the pediatrician for an urgent same-day appointment and was seen within an hour."

By this point, their pediatrician was concerned and sent the family to the emergency room, where blood tests raised concerns about cancer.

Then came the life-changing news: doctors discovered a softball-sized mass in Elena’s abdomen.

"Getting to the ER was a blur," Sarah said. "I remember it in bits and pieces like I was moving in tunnel-vision. We had been prepared by the pediatrician that this could be cancer, so hearing that she had a mass in her abdomen ultimately confirmed our worst fears as a parent."

Overnight, their lives changed forever.

"One day, we were playing soccer and hiking together as a family," Sarah said. "The next day, we were learning medical terms and learning how to live in a children’s hospital."

The parents continued working full-time throughout Elena’s treatment to avoid losing income and health insurance, with Sarah juggling remote work alongside long hospital stays and caregiving duties.

"When Elena is in the hospital, [Antonino] is home with our older daughter," Sarah said. "We’ve had to learn to live apart. We’ve had a lot of support from our family and community during this time, and we couldn’t do it without them."

Over the past year, Elena has undergone an intensive course of treatment for neuroblastoma, including multiple surgeries, five rounds of chemotherapy, four rounds of immunotherapy as part of a clinical trial, surgery to remove the abdominal tumor, two stem cell transplants and 12 days of radiation therapy.

Both stem cell transplants resulted in complications that required ICU stays. Elena has also undergone countless scans and tests.

She also underwent procedures to place a feeding tube and central line, as well as ovarian tissue preservation to help protect her future fertility.

Elena is now in Phase III, known as the post-consolidation phase, of her treatment.

This phase involves five rounds of inpatient immunotherapy, followed by a sixth round at home before she moves on to maintenance therapy.

Next week, she will undergo an MIBG scan, a specialized imaging test commonly used in neuroblastoma that helps doctors identify cancer cells throughout the body and assess how much disease remains.

The scan will also be used to calculate her Curie score, which measures the extent of neuroblastoma throughout the body.

When Elena began treatment, her Curie score was 25 out of a possible 30, indicating extensive disease throughout her body.

"At her last scan after completing radiation, she was down to a Curie score of 1," Sarah said. "Next week, we hope to see a Curie score of 0."

Contact Newsweek editors on this story: Charlotte Nisbet and Tony Phillips.