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Promise and Progress - Against All Odds: Ariana's Story

Faces of Childhood Cancer

Against All Odds: Ariana's Story

Date: June 1, 2004

Ariana’s is one of those unbelievable stories. By age 5 she had already faced a liver transplant, a life-threatening surgical complication and a deadly cancer. Though the odds seemed always to be working against her, Ariana is a fighter. With parents and a medical team who refuse to give up, she continues to defy the odds.

When the Epsteins’ daughter Ariana was born five years ago in Lima, Peru, she looked like a perfectly healthy baby. But, at just 31/2 months, she was diagnosed with a fatal liver disease that would require a transplant. The Epsteins left family and jobs to travel to the United States for Ariana to receive the liver transplant that could save her life.

By all accounts, the transplant was a success. The only visible sign of her surgery was an abdominal hernia caused because the donor liver was from an older child and larger than the infant’s small abdomen could accommodate. The hernia looked a bit odd but caused no real problems, and as Ariana grew into a healthy young toddler, old enough to question the protrusion from her belly, her mother, Talma, shared with her the amazing story behind it.

In 2003, as Ariana approached school age, the Epsteins felt it was time to have the hernia repaired. By now, the family had made Maryland their permanent home and went to see Johns Hopkins pediatric surgeon Paul Colombani for the hernia surgery. The Epsteins thought that, unlike her liver transplant, this would be a comparatively simple procedure. Colombani agreed but ordered a CT scan of Ariana’a abdomen so he would know exactly what he was dealing with. The scan revealed an irregular mass in Ariana’s abdomen which turned out to be a rare cancer that, though uncommon, can be caused by immune-suppressing drugs given following organ transplants like Ariana’s liver transplant. 

“There was a million-to-one chance of this complication occurring, and I just couldn’t understand why it was happening to my daughter,” says Talma. “She had already been through so much and survived. How could she have cancer, too?” Since this was a very rare form of cancer, the treatment approach would, at best, be an educated guess. The cancer was a tennis-ball-size collection of cells located within her abdomen but not attached to any vital organs. Still, it was intertwined with arteries and veins that Hopkins experts believed would make curative surgery impossible.

The Epsteins took Ariana back to the Miami hospital that had done her liver transplant. “They had saved her once. We were hopeful they could do it again,” says Talma. However, during surgery to do a biopsy on the tumor, Ariana’s intestine was unknowingly nicked. More emergency surgery followed as doctors raced to clean the bacteria that spilled from her intestine into her abdomen and bloodstream and perform a temporary colostomy until she was strong enough for a permanent repair.

Ariana returned from surgery near death, with a raging fever and relying on a respirator to breathe. But again, Ariana defied the odds, and after 12 days in intensive care, she recovered. The Epstein’s joy was tempered by the realization that after surviving all of this, Ariana still had what would likely be her greatest battle ahead of her—the cancer growing inside her. As soon as she was well enough, they returned with Ariana to Johns Hopkins and the care of Robert Arceci, director of pediatric oncology at the Kimmel Cancer Center.

After closely examining the cells from the tumor, Arceci and his pediatric oncology team determined it was behaving like a lymphoma and decided to treat it like one. Their move was a partial success. The tumor stopped growing for a time, but it didn’t shrink. Another drug combination was tried. Soon, however, the tumor began growing rapidly and spread to Ariana’s lung. “We had tried what we thought was the best treatment option, and when that didn’t work we tried our back-up approach, but that wasn’t working either,” says Arceci. “It is the most difficult scenario for a pediatric oncologist because we are faced with telling the parents that their child may die. This case was even more difficult because we were dealing with such a rare type of cancer. There is very little written about it in the medical literature, so we are basically working blind, fighting an unknown enemy,” says Arceci.

Arceci told the family to take some time away from the hospital to think about their options. With the help of the Make-a-Wish Foundation, the family took a trip to Disney World. It was there that the Epsteins realized they could not give up the fight for their daughter’s life. “With everything she had been through, she had never given up. This tiny child had cheated death so many times. If I had given up on her, I would have felt like I was betraying her,” says Talma. The family returned from their trip and told Arceci they wanted to keep trying. Just as Ariana was in the hospital beginning this new combination of anticancer drugs, Talma learned that her husband had testicular cancer. “I felt helpless,” says Talma.

 “I didn’t know how much more I could take. How could this be happening to us?” Fortunately, her husband’s cancer was detected early, and with surgery and radiation therapy, he was expected to make a full recovery. More good news was to come. Just three weeks after starting Ariana’s new therapy, Arceci told the family that her tumor was shrinking and that the tumor in her lung was also gone. “He didn’t have to tell me. I knew it was working,” says Talma. “I could see her tummy decreasing in size,” she says. “We are definitely back in the game,” says Arceci. “Now, we’re talking about possibly curing her.” 

Says Talma, “The other day when Ariana received a get-well card, she said to me ‘Enough of telling me to get well. I’m already well. I feel fine.’ Now, all she wants is to run and laugh and play like a 5-year-old should.”