Yahya’s Story: Battling a Rare Brain Tumor with Resilience and Strength

In 2014, the Al-Soufi family was thrilled to learn that they were having a baby boy. With two daughters already at home—Sana, who was 6 at the time, and two-year-old Summer—the family felt complete when their son, Yahya, was born.

The year following Yahya’s birth was a whirlwind of happiness intertwined with the exhaustion that often accompanies the joys of parenthood. However, in 2015, when Yahya was just one month shy of his first birthday, his parents noticed a concerning change—the size of his head suddenly looked abnormally large. They took him to his pediatrician, Dr. Surbhi C. Dargan, who referred him for a CT scan the following day at Children’s Hospital New Orleans.

The results of the imaging were unimaginable: Yahya had a brain tumor.

The tumor’s growth was causing swelling in his brain, which is why the size of his head had suddenly grown bigger. Yahya would need to be admitted to the hospital immediately, and he would also need to undergo emergency surgery.

The family was devastated, but they also understood there was no alternative option. Yahya had a brain tumor known as juvenile pilocytic astrocytoma, a cancer that develops from brain cells called astrocytes, which form tissue that surrounds the nerve cells in the brain and spinal cord.

“In cases like Yahya’s, surgery is necessary in order to relieve pressure on delicate brain structures and to maximize the chances of complete tumor removal while preserving neurological function,” explained Dr. O.A. Roberts, the neurosurgeon at Children’s Hospital New Orleans who performed Yahya’s surgery. “I strive to preserve as bright a future as I can for each child in partnership with their families and my colleagues. It can be very challenging, and I’ve learned from them not to take the gift of each day for granted.

A few days after Yahya was admitted to Children’s Hospital New Orleans, Dr. Roberts performed what would be the first of multiple surgeries, draining the fluid that had swelled in Yahya’s brain and inserting a shunt to allow any further fluid build-up to drain. Dr. Roberts also removed as much of the tumor as possible, but he couldn’t remove all of it because of the proximity to critical brain areas.

“The surgery felt like it took an eternity—it’s a day I will never forget,” Yahya’s mother, Fawzia, recalled. “I didn’t know if my son would come out or not. I think I cried the entire time.”

Finally, Dr. Roberts emerged from the operating room with welcomed news: Yahya was in recovery, and he was doing well. He spent the next week being carefully monitored in the ICU, and not long after, on July 25, 2015, he celebrated his first birthday in his hospital room, surrounded by his family and care team.

“We were just so grateful he was alive,” Fawzia said. “And we were so thankful for Dr. Roberts. He is such a good neurosurgeon and takes such good care of his patients—everyone loves him.”

The next step in Yahya’s treatment was to undergo chemotherapy to try to shrink the rest of his tumor and halt any further growth. He was placed under the care of pediatric neurooncologists at Children’s Hospital New Orleans, including Dr. Maria C. Velez.

“They waited until Yahya fully healed from his surgery, then we started the chemotherapy,” Fawzia said. “The oncologists were wonderful. They explained everything in detail and prepared me for what was to come.”

Although Fawzia was mentally prepared for what her son would go through, it was still difficult to see the side effects of the chemotherapy, especially with her son being so young.

“It made him very sick, and he was in and out of the hospital,” she recalled. “But we leaned on our family and our faith, and I tried to be strong for my son.”

Then, one day at home, Yahya had a seizure. The next day, during an appointment in the hematology-oncology clinic, he had another—and he was immediately admitted to the hospital once more.

Dr. Roberts performed another surgery to evacuate an intracranial bleed related to the seizures. It was a successful surgery, but Yahya was far from healed. Due to the complex and critical nature of his rare brain tumor, he continued to face a series of additional health challenges. He developed severe sleep apnea and needed to get a tracheostomy tube to help him breathe.

“The team explained everything to me, and Ms. Shauna, who is on the respiratory team, taught me everything I needed to know about how to care for a child with a trach,” Fawzia said. “Yahya stayed in the hospital for a month after that, and I was so grateful for their patience and support. At home, I have to be the doctor and the nurse at the same time, and Ms. Shauna really helped me prepare for that.”

Yahya has had to undergo extensive occupational, physical and speech therapy. His health improved for a while, but in 2020, it took another turn when a cyst was discovered growing around the tumor. Dr. Roberts performed another surgery to drain the cyst, and although Yahya had been decannulated from his first tracheostomy by that time, he had to have another to support his breathing.

“It’s been such a long and difficult journey, but we keep going,” Fawzia said. “I will never forget how supportive all his doctors at Children’s Hospital New Orleans have been. They were so encouraging, and they reminded me that I was a good mom—they are one of the reasons I can be strong and take care of my son. They helped me trust myself, and without them, there is no way I could have gone through this.”

Today, Yahya continues to receive regular monitoring and follow-up care. Every three months, he gets an MRI to monitor his tumor’s growth, and he continues to see his doctors in clinic.

“He loves going to clinic,” Fawzia said. “Whenever he sees Dr. Velez and the nurses at hematology-oncology, he points to his port—he’s always happy to be there and he knows he gets good care from them.”

Despite his ongoing health needs, Yahya is doing well. He enjoys spending time with his family, and he is also back at school, making up for the two years he had to miss during chemotherapy treatment.

“Patients like Yahya remind me what a privilege it is to practice oncology,” Dr. Velez said. “To be able to witness the incredible strength, resilience, and courage that the patients and their families show in the face of one of life’s greatest challenges is something I never take for granted. It’s an honor to care for these patients and to help make a difference in their lives.”

To learn more about the hematology and oncology program at Children’s Hospital New Orleans, please see: https://www.chnola.org/services/hematology-oncology/