Lillian Callahan’s medical roller coaster started when she had a seizure at school at the age of 9.
Her parents, Mike and Erin Callahan, rushed her to the emergency room in their hometown of Atlanta, Georgia.
A CT scan revealed a lesion in the right side of her brain. After more testing, an MRI and two biopsies, the Callahans discovered that Lillian had a tumor — a tumor the surgeons said was inoperable due to its size and location. Still, the Callahans continued with the treatment, which was a combination of proton radiation and oral chemotherapy.
“We were past the point where radiation would continue to shrink the tumor,” Mike explained.
In addition, there was a new problem. Dead tissue cells in her brain caused a build-up of pressure. Lillian now had severe headaches and was prescribed steroids, but side effects included weight gain, hair loss and photosensitivity.
“She was so miserable,” Erin said.
Lillian turned 10. Again her parents insisted on surgery, hoping to remove the tumor and dead tissue.
“The neurologist said it wasn’t possible,” Mike recalled.
Too risky, they said.
The Callahans were told surgery could lead to a stroke or paralysis, but they couldn’t bear to watch their daughter suffer with no solution in sight.
“You have that sense of hopelessness,” Mike said. “You just want to make it better. If you could, you would switch positions with her in a millisecond.’
One day, Erin opened Facebook, scrolling through a brain tumor support group.
One post highlighted a story similar to hers — a mom wrote about doctors in Atlanta who refused to operate on her daughter’s brain tumor, and how they treated Dr. David Sandberg in Houston found.
“She posted pictures,” Mike recalls. “And she said, ‘I went to Houston and it changed my kid’s life.'”
Find a way
dr. Sandberg — professor and chief of the division of pediatric neurosurgery at McGovern Medical School at UTHealth and director of Pediatric Neurosurgery at Memorial Hermann Mischer Neuroscience Institute — has a reputation for saying “yes” when other surgeons say “no.”
When Erin Callahan found his email online, she immediately messaged him.
“I didn’t expect to get an answer, certainly not within 10 minutes,” she said.
But soon the Callahans traveled to Houston, where Dr. Sandberg was able to remove a larger portion of Lillian’s tumor, as well as the dead tissue.
As a result, Lillian, now 11, has no more headaches and is off steroids. She is about to start high school and undergoes experimental vaccine therapy in Buffalo, NY.
Her last two MRIs showed no new tumor growth and even a possible shrinkage.
“We couldn’t have done that if Dr. Sandberg hadn’t done the surgery,” Mike said. “She would be in a very different place now.”
And Lillian is just one of many patients who have sought out Sandberg when other doctors have been unable to provide solutions.
On January 24, the day before his fifth birthday, Jakota Reeder fell from a bunk bed. He told his mother Tori that his head hurt.
She assumed he had a concussion and took him to an emergency room near his home in Sweeny, Texas, where a CT scan revealed an arachnoid cyst.
Doctors told her not to worry and it wouldn’t tear.
“They kind of blew it off and said he was fine,” Tori recalled.
But Jakarta’s headache never stopped. One morning in March, he woke up screaming and vomiting. The cyst ruptured and his head filled with blood.
Jakota was transferred to the Children’s Memorial Hermann Hospital during a rescue flight, where Dr. Sandberg and his surgical team were on standby. Within minutes of arrival, Jakota was wheeled into the operating room.
“If I hadn’t brought him in on Friday, he wouldn’t be with me that Monday,” Tori recalls.
After three days in the hospital, the Reeders took Jakota home. Now he only has a scar on his scalp as a reminder of the life-saving surgery.
“He’s back to normal now,” Tori said. “He’s my little boy again. He’s a very different kid.”
Tori learned from Sandberg that the cyst should have had surgery when it was first discovered. She felt that Jakota was finally in good hands with Sandberg.
“Finally someone did something,” she said. “I knew my son would be fine.”
Torri added: “I can truly say that Dr. Sandberg saved my son’s life. I will recommend him to everyone.”
Just doing its job
As for Sandberg, he’s just doing his job, which he loves.
“A patient comes to you with a finite problem, and you can help them,” he said.
He approaches each case with care.
“I have children and I know how much patients love their children,” he said. “We want to offer them hope.”
Sandberg initially saw no career as a pediatric neurosurgeon. But he grew up admiring his father, Joel Sandberg, an ophthalmologist in Florida. In high school, the two went on medical missions. Then Sandberg realized the potential of medicine to help others.
“My mind was opened,” he said.
He received his bachelor’s degree in history from Harvard University.
“Growing up in South Florida, I was amazed when winter arrived,” he recalls. “And I couldn’t believe people were sleeping on the streets in Boston in the winter.”
He volunteered at a student-run homeless shelter in Harvard. He then became director of a program to help people find jobs and eventually ran the shelter.
“It was the best thing I did in college,” Sandberg said.
While the experience inspired him to consider a career in public health, his path eventually led to him becoming a neurosurgeon.
“I realized I loved being in an operating room,” said Sandberg, who received his MD from Johns Hopkins University.
For his postgraduate education, he attended Weill Medical College of Cornell University, first as a surgical intern at New York Presbyterian Hospital, then as a resident in neurosurgery.
He then became a visiting fellow in pediatric neurosurgery at the Hospital for Sick Children in Toronto and a fellow at Children’s Hospital Los Angeles.
He held faculty positions at the University of Miami’s Miller School of Medicine for eight years before moving to Houston in 2012.
Sandberg currently has appointments with Memorial Herrmann, MD Anderson and Woman’s Hospital in Texas.
He remains committed to service and makes numerous foreign trips to Guatemala, Honduras, Peru, Uganda and Haiti. He works with both the Foundation for International Education in Neurological Surgery (FIENS) and Project Medishare.
He also regularly volunteers with his kids in downtown Houston with Food not Bombs.
Looking for new answers
Sandberg continues to search for answers – even for the most challenging cases.
Since 2004 he has been researching ways to treat tumors in the hard-to-reach brainstem or fourth ventricle of the brain.
Sandberg explained that chemotherapy given through a vein or pill can be difficult to get to the brain because of the blood-brain barrier, a network of fine blood vessels that protect the brain from foreign substances.”
“The brain is very good at protecting itself,” Sandberg said. “That’s nice if you have an infection. However, it is bad when you try to administer a drug to solve a problem.”
For chemotherapy to work in the brain, he explained, high doses are needed to break the blood-brain barrier.
“The chemo is wreaking havoc on other organs,” Sandberg said. “I have seen so many children who have been damaged by chemo. I see patients dying from the treatment, not the disease, and it’s heartbreaking.”
Even when brain tumors are surgically removed, a small amount often remains on the brainstem.
“We can often remove 99 percent of the tumor, but not 100 percent,” Sandberg said. “I’m often in a situation where I’m staring at that small piece of tumor that I can see under a microscope. I kept thinking, why not blow it up with some medication?
He was sure there must be a better way.
“I had this idea,” he said. “We could administer drugs locally at the site of the tumor. We can achieve very high drug levels at the site of disease without exposing the body unnecessarily.”
Sandberg’s biggest concerns were medulloblastoma, one of the most common childhood malignancies, and ependymoma, fast-growing cancerous tumors that often recur. Both are common in the fourth ventricle of the brain.
“No one had administered drugs in that particular space before,” Sandberg said.
He started animal testing while still living in Miami; in 2013, he began the first human clinical trials in Houston, collaborating with MD Anderson, UTHealth, and Memorial Hermann on the study.
Sandberg worked with the chemo drug methotrexate and children with recurrent malignant brain tumors.
“We had a remarkable success,” he said. “We have certainly extended the lives of children. And I’ve been doing clinical trials ever since.”
He is currently enrolling patients in two different studies – one for medulloblastoma and one for ependymoma.
The success rate for other ependymoma treatments is low, Sandberg added.
“It’s a typical story of failed trials,” he said.
He hopes that finding the right medication is the key.
“For now, we’re doing a small pilot,” he said. “We hope to hit a home run.”
Offering hope to families is Sandberg’s main motivation.
“He cares deeply about the children he treats,” explains his colleague Dr. Manish Shah, pediatric neurosurgeon at Children’s Memorial Hermann Hospital and UTHealth.
“We succeed thanks to him,” said Shah, who was recruited by Sandberg. “He’s like my big brother. He is a great role model, a great father and husband. He does it all.”
Lindsay Peyton is a freelance writer from Houston.