How a rare childhood brain tumor brought us together

My stepson Roberto Saenz was heading to junior prom in 2009 when his brain tumor symptoms began. As he rode in the limo, he started to have a severe headache and began vomiting. His mother, Debbie, took him to the children’s hospital in Corpus Christi, Texas, where doctors diagnosed him with a severe sinus infection.

Growing up, Roberto had had a history of frequent headaches, but they were becoming more painful and medication wasn’t helping. Finally, an MRI revealed a mass at the back of his brain.

In June 2009, Roberto had brain surgery in Corpus Christi and was diagnosed with a brain tumor. He recovered well and was voted prom king his senior year.

A brain tumor recurrence

The next fall, another MRI revealed a small “spot” near the resection site, where his tumor had been removed. Unable to determine if it was scar tissue or tumor, Roberto’s doctors continued to monitor him closely. His headaches began again, and when the MRI showed progression, Roberto had his second brain surgery in May 2011. This time, the pathology confirmed a devastating diagnosis: grade III pleomorphic xanthoastrocytoma (PXA) with anaplastic features, an extremely rare brain cancer.

Roberto’s doctor and our family decided to seek consultation from MD Anderson. I can still hear our hero, Roberto, saying, “Let’s do this.” As a family, we were heartbroken and very emotional, but our warrior was ready to fight.

United as one team

On June 2, 2011, we began a journey together. I’m married to Roberto’s father. With Roberto’s mother, Debbie, her husband, and all of Roberto’s siblings and stepsiblings, our separate families united as one team. We traveled to MD Anderson and met with the Brain and Spine Center Neuro-Oncology team. Dr. Marta Penas-Prado was straight-forward and gave no promises, but she was very positive and had a game plan. She recommended 30 rounds of radiation therapy and one year of oral chemotherapy (temozolomide), which Roberto began that month.

By the time we got home from Houston, Debbie’s co-workers had planned a fundraiser, and our first Team Superman shirt was in the making. We began sharing his journey on Facebook, and the support has been overwhelming. We’ve mailed team shirts to supporters across the U.S., from Hawaii to Florida.

Brain tumor recurrences

Roberto’s MRIs were stable for almost three years, until a small enhancement appeared in January 2014. Close surveillance was ordered again.

By that summer, Roberto’s doctors agreed a third surgery was needed. The post-op MRI confirmed the tumor was completely removed, but the pathology results showed the cancer had grown more aggressive.

Roberto and I drove home together that day. I asked if he was scared. “No, this is the path God has chosen for me, and I will not give up,” he said. Roberto continued MRIs every three months and restarted oral chemotherapy.

In October 2014, we learned the brain tumor progressed again, but surgery was not an option. Instead, Roberto enrolled in a Phase II clinical trial at MD Anderson. We learned that his pleomorphic xanthoastrocytoma has a BRAF gene mutation, which can increase the growth and spread of cancer. This same mutation is also seen in melanoma. The clinical trial medicine worked for melanoma and we prayed it would also work for Roberto.

Though the tumor was stable for a while, the pressure and excruciating headaches returned by fall 2016. Roberto had three more brain surgeries back to back and received a second round of radiation between surgeries. After another recurrence in January 2018, Roberto began Avastin, an IV chemotherapy that we hope will answer our prayers.

Team Superman

Since the beginning, our small community of San Diego, Texas, has rallied around Roberto. Family and friends have honored him with fundraisers, prayer gatherings, donations and blessings. Some have even taken pictures in their Team Superman shirts on vacation or worn them when we travel to MD Anderson. Kids see Roberto and say, “You’re Superman!”

We know our son is making a difference in ways he doesn’t even realize. Through Roberto, a whole community has come together in faith to pray.

As caregivers we may cry, scream, pull our hair, and feel overwhelmed and heartbroken. But what matters is that our son was willing to accept this path and fight! So we have to pick up the pieces, mend them together and unite for him. With faith, hope and love, we have the strength to be by his side every step of the way, one day at a time. 

Request an appointment at MD Anderson online or by calling 1-877-632-6789.