One morning last December, 4-year-old Lilli Durante woke up, and her left eye was crossed. Her parents took her to numerous doctors and finally learned that Lilli had cancer in her optic nerve.
Left untreated, Lilli could lose her vision. Doctors were unable to operate so chemotherapy was initiated.
While her parents felt sad and scared, the child responded with strength and a sense of whimsy to the treatment: Lilli is wearing a different princess gown for each treatment with chemotherapy.
Lilli, now 5, has worn what she calls a princess gown for each of her 20 chemotherapy appointments and hasn’t repeated an outfit yet. She also dresses as a princess from Disney. She was Belle, Ariel, Cinderella, and Aurora (Belle is her favorite) so far. The other dresses she wears have lots of fabric, sparkles, glitter, and frills. While her parents are buying many of the suits, friends and family have begun to give her some to keep up the practice for another 20 infusions. She left a trail of glitter at UPMC Children’s Hospital in Pittsburgh where she got her last treatment.
Her doctor, Dr. Jim Felker, an assistant professor at Children’s pediatric neuro-oncology program, said that when Lilli arrives he sees a transformation.
“She really is special. She brightens up the clinic,” he said.
Felker said the tumors had shrunk, but Lilli had an allergic reaction to the first form of chemotherapy and had to switch to a new regimen. Durante said, however, that Lilli still struggles to see. She needs to wear an eye patch at night over her right eye to help correct the eye that has been crossed and she has glasses.
“Her eye is still crossed. She will likely need eye muscle surgery,” Durante explained.
Lilli is bravely accepting her treatments, but she hates eye drops.
“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?” Durante said with a laugh.
Lilli knows that she’s different and she embraces it. Felker tells others that Lilli is a positive example.
“Lilli is an inspiration,” he said. “You realize how resilient kids like Lilli really are.”