5-year-old with optic glioma wears different gowns for each of her chemo sessions

Every young girl’s dream is to be a princess and wear a beautiful gown. But for Lilli Durante, wearing a princess gown helps her cope during her visits to the hospital for chemo treatment. It was December last year when Lilli woke up in the morning with her left eye crossed. Her parents brought her to plenty of hospitals and found out she had an optic glioma, a condition where her optic nerve developed a slow-growing brain tumor. When left untreated, the cancerous growth can cost dear Lilli her eyesight.

Girl with optic pathway glioma goes viral.
Courtney Durante

After the diagnosis. Lilli’s family and her doctors promptly started chemotherapy since surgery won’t be possible. The Durante family felt frightened and worried about their little princess’ health and safety. But our Lilli handled it differently. Like a true princess in the movies, she braved through the whole procedure with a heart full of hope and charm.

“She just knew she had to get some medicine for her sick eye. She is really a trooper through all of it,” said Courtney Durante, Lilli’s mom. Every chemotherapy session, the toddler wears a different gown. “She loves wearing big gowns, the bigger, the better. The fluffier, the sparklier, the better.” She added.

She wears princess gowns to help fight optic pathway glioma.
Courtney Durante

Lilli never failed to grace the hospital with her head-turning outfits. In her 20 chemotherapy sessions for her optic pathway glioma, she has not worn the same dress twice.

Lilli already transformed into Ariel, Cinderella, Aurora, and her favorite—Belle. Most of Lilli’s dresses are big and opulent-looking, with plenty of fabric, embellishments, and glitter (there’s no such thing as too much glitter!). In her last treatment at the UPMC Children’s Hospital of Pittsburgh, the adorable princess paved the halls with traces of glitter.

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At first, Lilli’s parents bought all of the dresses she wore to treatment. Eventually, her friends and family contributed to the little girl’s dream and gave her more dresses for another 20 sessions. “She loves surprising everyone every week,” said Lilli’s mom.

“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.”

Courtney Durante

Dr. Jim Felker, Lilli’s doctor, and an assistant professor in the hospital’s pediatric neuro-oncology program noticed the spark in Lilli’s eyes whenever she transforms into royalty. “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 said in an interview with TODAY Parents.

Optic pathway glioma in children may affect both eyes and is likely to occur in children younger than 10 years old. The disease accounts for 5 percent of all childhood tumors, affecting the body’s endocrine system. Patients experience abnormality in hormone production, salt and water balance, sleep, and appetite.

Courtney Durante

According to Felker, Lilli’s tumors have shrunk. But the young girl had an allergic reaction to the first chemotherapy protocol, so she had to be transferred to a new treatment regime. Despite her bravery and willpower, Lilli is still having a hard time seeing clearly. Aside from her prescribed glasses, Dr. Felker made the little princess wear an eye patch at night to help correct her crossed eye.

Patients with Optic pathway glioma has a 5 percent chance of causing blindness. While Lilli’s condition is a serious matter, the disease has a relatively high cure rate. Lilli will most likely need eye muscle surgery.

Courtney Durante

Lilli’s healing journey is going steady, and the Durante family looks forward to the day where their crown princess fully recovers. But for the meantime, she’s still yet to surprise the crowd while wearing new dresses befitting a royalty.

UPDATE via a Facebook post from her mother:

“One year of chemo and over 50 hospital visits and we have finally finished the first phase. Her mediport is finally out. Her eye is still crossed, so she is scheduled for eye muscle surgery on August and the next MRI is in July. Any signs of growth or deteriorating vision will cause her to go back on chemo, so she’ll be monitored closely and require MRIs the rest of her life. This is a picture of her with her favorite CNRP from Children’s taken on her last day of chemo.” #flashesofhope #BrainTumorAwarenessMonth