Last December, 4-year-old Lilli Durante woke up one morning and her left eye was crossed. Her parents took her to numerous doctors and eventually learned Lilli had an optic pathway glioma, cancerous growths on her optic nerve.
Left untreated, Lilli could lose her vision. Doctors couldn’t operate so they started chemotherapy.
While her parents felt sad and scared, the toddler reacted to treatment with strength and a sense of whimsy: Lilli wears a different princess gown to every chemotherapy treatment.
“She just knew she had to get some medicine for her sick eye. She is really a trooper through all of it,” mom, Courtney Durante, 33, of Irwin, Pennsylvania, told TODAY Parents. “She loves wearing big gowns, the bigger the better. The fluffier, the sparklier, the better.”
For every one of her 20 chemotherapy appointments, Lilli, now 5, has worn what she calls a princess gown and has not once repeated a dress. Sometimes she dresses as a Disney princess. So far, she’s been Belle, Ariel, Cinderella and Aurora (Belle is her favorite). The other dresses she wears have lots of fabric, sparkles, glitter and frills. While her parents purchase many of the dresses, friends and family have started giving her some so she can keep up the practice for another 20 infusions. When she got her last treatment, she left a trail of glitter throughout UPMC Children’s Hospital of Pittsburgh.
“She loves surprising everyone every week,” Durante said. “Some of the nurses call her, ‘her majesty.’ It puts a smile on everyone’s face...and usually she gets compliments and eats it up and loves it. It really gives her something to look forward to.”
Her doctor, Dr. Jim Felker, an assistant professor in the pediatric neuro-oncology program at Children’s, said he sees a transformation when Lilli arrives.
“She exudes that energy and that happiness that is vital to get through what can otherwise be, from the outside, at least, a sad experience,” he told TODAY Parents. “She really is special. She brightens up the clinic.”
Felker said the tumors have shrunk, but Lilli had an allergic reaction to the first chemotherapy protocol and had to switch to a new regimen. Yet, Durante said Lilli still struggles to see. She needs to wear an eye patch on her right eye at night to help correct the crossed eye and she has glasses.
“Her eye is still crossed. She will likely need eye muscle surgery,” Durante explained.
Lilli bravely faces her treatments, though, she hates receiving eye drops.
“She surprises us, to be honest,” Durante said with a laugh. “You have surgery to get a port in and you get chemo every week but the thing that makes you the most mad is the eye drops?”
Lilli knows she’s different and she embraces it. Take her port. She calls it a princess button and loves that it is purple.
“She does love to show people her princess button,” Durante said.
Felker says Lilli's a positive example for others.
“Lilli is an inspiration,” he said. “You realize how resilient kids like Lilli really are.”