Nayeli’s story: Strength, fire and resilience

Brisa knew she had to stay calm on the 5-hour ambulance ride from her hometown, Lubbock, TX, to Children’s Health in Dallas. Otherwise, her 10-month-old daughter, Nayeli, would pick up on her anxiety.

It wasn’t easy considering her worst fears had just been confirmed: Nayeli had a rare form of cancer called retinoblastoma. It starts in the eyes and affects very young kids.

“The doctors told me Nayeli’s left eye would probably need to be removed and all I could think about was what will her life be like?’” Brisa says. “I knew I had to be strong for her.”

A telltale sign

Brisa was on high alert for a telltale sign of retinoblastoma – pupils that look white, especially in photos – because retinoblastoma runs in the family.

When Nayeli’s left pupil looked white in a picture, she went straight to the pediatrician.

“They said everything was fine, so I felt crazy,” Brisa says. “But it got more noticeable and family members saw it too. So I took her to the emergency room here in Lubbock.”

The ophthalmologist there confirmed that Nayeli had retinoblastoma – in both eyes – and sent them to Children’s Health in an ambulance.

Brisa had nothing on her except her phone. So when Angeline Wang, M.D., Pediatric Retina Specialist and Assistant Professor at UT Southwestern, walked her through the diagnosis, Brisa started typing notes and questions as fast as she could on her tiny screen.

The next day, an MRI revealed two large tumors in Nayeli’s left eye, and four smaller ones in her right.

“No matter how much I suspected it, I still wasn't ready for this diagnosis,” Brisa says. “I kept thinking: ‘How is any of this possible in this little human's eye?’”

Brisa was waiting for Dr. Wang to tell her that Nayeli's left eye would need to be removed.

But Dr. Wang consulted with the pediatric ocular oncology team and determined that the eye could be saved by using a cutting-edge therapy brought to Children’s Health by J. William Harbour, M.D., Director of Ocular Oncology at Children's Health and Chairman of the Department of Ophthalmology at UT Southwestern: Intra-arterial chemotherapy (IAC).

“Our first priority is always to save the child’s life,” Dr. Wang says. “But we also work very hard to save their vision. And without IAC, we would’ve had to remove Nayeli’s left eye.”

A high dose of chemotherapy straight to the tumor

IAC is no simple procedure.

“You need a very skilled pediatric neurosurgeon, who is both comfortable working with children and working with tiny blood vessels. And that’s Dr. Rafael De Oliveira Sillero,” Dr. Harbour says.

Dr. Sillero threads a long, thin tube (catheter) into an artery in the leg, then through tiny blood vessels into an artery that connects to the eye. There, the catheter delivers a high dose of chemotherapy directly to the blood vessels that feed the tumors.

“For some kids, it only takes two or three sessions of IAC and that’s all they need,” Dr. Harbour says. “It used to be that well over half of kids with retinoblastoma had to have one eye removed. But advances in care like IAC have helped drop that number to only about 5%.”

Nayeli had her first IAC appointment a week later. The treatment itself went smoothly. But then she had a breathing issue that required care in the ICU.

For three long days, Brisa waited, feeling numb as she saw her usually smiley, giggly baby so still. The nurses checked up on Brisa, brought her food, and let her nap — care so impactful that Brisa nominated two of them for a nursing award.

Finally, someone came by and tapped Brisa on the shoulder. Nayeli’s breathing was stable. And an hour later, she was in Brisa's arms.

A specific care plan for six different tumors

In the days that followed, Nayeli bounced back and Brisa wrapped her head around the care plan. They’d spend two weeks in Dallas every month for the next six months. Nayeli would receive specific treatment for each tumor in each eye using a combination of IAC and laser therapy.

Social worker Jamie helped Brisa work through the logistics, connecting her with the Ronald McDonald House so she didn’t have to pay for a hotel and gas cards to help cover the cost of the many long drives ahead.

When Brisa and Nayeli were in Dallas, Brisa’s mom, who she describes as “her backbone,” took care of her sons at home. Her dad or a friend often came with them on the 5-hour drives to Dallas.

And before each appointment, they'd listen to Nayeli's favorite song: "Jesus We Love You" by Bethel Music.

One of Brisa’s fears was the major side effects of chemotherapy. But Nayeli didn't experience hair loss or nausea and has shown no signs of treatment impacting her growth or brain function – because with IAC, chemotherapy is only delivered to a very specific location.

“The only real side effect was that her eyes were swollen for a few days after treatment, but that didn’t stop her,” Brisa says. “She still wanted to go outside and play with her brothers.”

Strength and fire

After several long months, Nayeli had her final treatments. All the while, Dr. Wang monitored her vision. The tumors in her left eye were initially blocking about 90 percent of her vision — but now that’s her better seeing eye.

“How much a child’s vision is affected by retinoblastoma depends on many factors, most importantly whether the tumors involved the central vision parts of the retina,” Dr. Wang says. “But kids are amazing. Their brains are still developing so even if they have scarring, their vision can adapt to it in a way that wouldn’t happen in adults.”

Nayeli still goes in for checkups about every 10 weeks. Her care team schedules all of her doctors in a row, so they can get everything done in one trip. Brisa describes Nayeli, now two years-old, with two words: Strength and fire.

“This girl does not walk, she runs everywhere we go,” Brisa says. “She makes it clear when she wants something and she stands up to her big brothers.”

Looking back on her experience, Brisa is deeply grateful for her village of support: her friends, family, community and care team.

“I won’t lie and say it wasn’t scary, because it was very scary. I’m still nervous at each appointment,” Brisa says. “But the care team kept me in the loop about every single thing. They walked me through every detail no matter how many times I asked, which helped keep me calm. And when you have a team like that, it makes everything easier.”

Her biggest hopes for Nayeli as she grows up: To keep that strength, fire, and resilience.

“She’ll grow up knowing that she did this so young and she got through it, so there's nothing that can bring her down,” Brisa says.

Learn more

At Children's Health, we strive to not only cure a child's disease but use treatments that will give them the best quality of life as they grow up. We provide comprehensive care for children with retinoblastoma, tailored to each child's unique needs. Learn more about this rare eye cancer and treatment options.