Joy that a tumor cannot touch

Little Olivia Shulov sat quietly in her chair and stared. She did not blink. She did not move. She seemed to be lost in thought. Or maybe she had fallen asleep.

But Olivia, just 6 years old, was having a seizure. Some call them petit mal seizures. Her father, Roman Shulov, calls them staring seizures. Doctors call them absence seizures.

Olivia has a low-grade glioma, located in the temporal lobe. Olivia’s tumor is a benign tumor, which means it is not cancer, but it is the reason that she has seizures. 

When Olivia’s family received this news in 2021, they were scared. They wondered what it would mean for her quality of life. Would the seizures go away? Could she keep swimming and cheerleading? Would she be able to keep doing the things that she loved?  

The Shulov family found answers and hope at St. Jude Children’s Research Hospital. They also found much-needed help and support. 

“St. Jude is a unique place,” says Olivia’s mother, Marina Shulov. “It is somewhere you can go and relax and let them help you with everything.”

Doctors at St. Jude gave Olivia medicine to stop the seizures. She had MRIs every 3 months to watch for tumor growth. The tumor did not grow, and, for a while, the medicine worked. It stopped the seizures. But in early 2024, the seizures came back.

The doctors ran tests and found that the tumor had grown. After much thought and discussion, Olivia’s family and medical team decided that surgery would be the best way to help her.

Surgeons were able to remove most of the tumor. But a small piece of the tumor was attached to a blood vessel. The doctors decided to leave that piece. 

Olivia’s seizures stopped again, and the doctors do not think the tumor will grow anymore. Olivia’s care team continues to monitor her closely. They hope she will be able to stop taking her seizure medicine someday. 

Until then, Olivia loves visiting St. Jude. The 9-year-old enjoys getting her hair done in Family Commons and eating lunch at Kay Kafe. She rides through the hospital in her little red wagon every chance she gets. And she looks forward to swimming and cheerleading again.

“It is funny that Olivia looks forward to going to St. Jude every time she has an appointment,” says Olivia’s father, Roman. “It is not a place that scares her. It is just the opposite. It is a place she wants to go to.”