Five-Year-Old Boy with Skull Base Chordoma Receives Life-Saving Care

Patient Stories

The first signs

It was a hot summer day when Joseph first discovered that something might be wrong with Michael, his youngest son.

“It was 120 degrees,” Joseph recalled. “He was swimming in a warm lake with his five brothers and sisters — the water was probably 90 degrees. Mike started shivering and, when he came out of the water, he was turning purple.”

They wrapped him up and got him home, and his temperature stabilized. A week later, his teacher called Joseph to express concern about Michael’s gait. The way he was walking, she said, seemed to have suddenly changed. 

“We decided to get him checked out as soon as possible,” said Joseph. “That was when his journey started.”         

Diagnosed with a skull base chordoma

Doctors ran a series of tests. Michael’s final scan – a simple MRI at his local children’s hospital – was supposed to last no longer than 15 minutes. As more and more time went by-- 30 minutes, then an hour, then an hour and a half – Joseph, who was waiting in the lobby, began to fear the worst. Finally, a team of specialists came out and broke the news: Michael had a malignant tumor.

“They did an emergency biopsy because the tumor was located between his brain, his brain stem and his spinal cord,” recalled Joseph. “It was a very rare tumor that almost never shows up in children.”

Michael, an otherwise healthy five-year-old boy whom Joseph describes as “happy and full of smiles,” was ultimately diagnosed with a skull base chordoma. A chordoma is a form of bone cancer that starts along the spine. When it occurs at the base of the skull, it is called a skull base chordoma. It often affects vital structures, such as the brainstem and the nerves that control movement of the face, eyes and swallowing.

“Of course, we panicked,” said Joseph. “I was thinking, what’s wrong with my baby? How can we fix this?”

A nationwide search

Doctors from his hometown institution removed as much of the tumor as possible and inserted screws and rods in Michael’s spine. The next step in Michael’s treatment plan was going to be radiation therapy.

“Unfortunately, the radiation oncologist told us there was only a 20% chance they could actually do anything with the tumor that was left,” recalled Joseph. “It was scary because we didn’t have a plan – it seemed inoperable.”

Michael’s team began reaching out to doctors across the nation, searching for experts who might be able to help.

“It’s very emotional,” said Joseph, fighting back tears. “They reached out to Texas Children’s Hospital, and one of their expert neurosurgeons, Dr. Guillermo Aldave, immediately said, ‘Yes, I’ll take the case.’”

Dr. Guillermo Aldave, Director of Neurosurgery Oncology and Co-director of skull base tumor program at Texas Children’s, is a national expert in maximizing the safe treatment of pediatric brain tumors and skull base tumors and improving patients’ clinical outcomes and quality of life.

“Dr. Aldave got us on the phone,” recalled Joseph. “And just the warmth from this man, the feeling you have just speaking with him, it was incredible. He basically said, ‘Bring your son to me and I’ll help him. I can make him better.’”

Life-saving treatment

“Michael had a very rare tumor, especially for kids – less than 5% of intracranial tumors like Michael’s are pediatric,” said Dr. Aldave. “In his case, we had to remove the tumor from both sides of his skull base. We started on the right side first and then a few days later started working on the left side.”

“It’s complicated,” added Dr. Aldave, “because everything in that area is important. The brainstem, the main arteries, the carotid artery, the vertebral artery. That’s why most of the time a complete resection may be deemed impossible.”

Tumor resection is the surgical removal of as much of a cancerous or benign tumor as possible. Dr. Aldave smiled and said, “I’m happy to report that, after three stages, Michael got a complete resection.”    

Bright future

“Michael has had eight surgeries since September. And now, he’s wonderful,” said Joseph. He smiled down at Michael, who was wearing a halo brace in his hospital bed with his favorite stuffed tiger at his side.  

“Here he is, 100% cancer free, tumor free. He’s my baby boy, and he’s going to be perfectly fine. I’m so very thankful for Texas Children’s Hospital. I told Michael that Dr. Aldave is your superman doctor – he saved your life. But Dr. Aldave is so humble, he said, ‘No, I’m not the superman. Michael is.’”

Learn more about Texas Children’s No. 2 ranked Neurosurgery Program, the Brain Tumor Program, and the Neurosurgical Oncology Program.   

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