For most of her life, Veronica struggled with breathing while she slept, difficulty swallowing and other issues that seemed to stump her doctors. She struggled with eating, too, and her weight fluctuated. At her lowest point, she weighed only 43 pounds at age 10.
Her grandmother, Angela, estimates the family saw more than 60 otolaryngology (ENT), endocrinology, sleep medicine and other specialists over nine years at Chicago area hospitals in search of a specific cause of what her doctors thought was obstructive sleep apnea.
“We had that diagnosis, but no treatment or understanding of how to treat it and her other issues,” said Angela. “Now we know why.”
Earlier this year, when a doctor suggested Veronica undergo another sleep study, Angela insisted that her granddaughter instead get an MRI scan.
“I just knew that something else was going on,” Angela said.
Her instinct was right. The scan revealed one of the rarest brain tumors, a ganglioglioma.
Just hours after the scan, after being referred to Ann & Robert H. Lurie Children’s Hospital of Chicago, Veronica was undergoing surgery to release pressure on her brain from hydrocephalus, or fluid buildup on the brain because of the tumor. Dr. Sandi Lam, head of Lurie Children’s Division of Neurosurgery, led this endoscopic procedure.
The tumor was likely causing all the issues Veronica endured with sleeping, breathing and eating since the ganglioglioma was wrapped around her brain stem, which affects all those key bodily functions. It was likely present when Veronica was born and continued to grow along with her.
The diagnosis made some of the other issues Veronica had been dealing off and on through the years make sense, Angela said, such as her crooked neck, routine headaches and fainting episodes. In the last year, her face had begun to appear asymmetrical, a result of the brain tumor.
“It was a shock, but also, in a way, a relief, to finally have a diagnosis,” Angela said. “She suffered for a long time.”
Days after her first brain surgery, Veronica had a second surgery to remove as much of the tumor as safely possible with Drs. Lam and Michael DeCuypere, an expert in treating pediatric brain tumors and a leader in the research of treating pediatric brain tumors. With the tumor mostly gone, Angela said she saw improvements almost immediately after Veronica woke up following surgery. She could eat and enjoy food. Her initial sleep apnea diagnosis was discovered to be hypoventilation, and she uses a machine called a BiPap to help her breathe deeply at night. Her face now appears symmetrical and she looks perfectly healthy, Angela said.
Because a small residual part of the tumor remains in her brainstem, Veronica continues to be seen by Dr. DeCuypere, and other Brain Tumor Program specialists at Lurie Children’s. They include Dr. Angela Waanders, interim section head of pediatric neuro-oncology and a researcher in the field of low-grade gliomas and other rare types of brain tumors. Ganglioglioma is a low-grade type of brain tumor for which physician-scientists like Dr. Waanders and Dr. DeCuypere have been uncovering the genomic underpinnings of what drives the tumor growth and developing new treatment options. If Veronica needs treatment, there are now more options available than just traditional chemotherapy.
Veronica, who is attending school virtually and getting mostly As, is enjoying being able to eat without complications – she especially enjoys quesadillas. She has gained more than 30 pounds since her surgery.
“I’m happy they found the tumor and I’m just hoping I can get through all the follow up,” Veronica said. “I’m thankful for my doctors and how they’ve helped me.”
Angela said she hopes other parents helping their child manage a complicated medical issue will not be afraid to speak up and be their children’s No. 1 advocate, as she was for Veronica.
“You know your child better than anyone else,” she said.