Krysti had an intuition: Something was really wrong.
For a few weeks, she’d been getting the same call from the school nurse. Her daughter, Ciri, had vomited again during class. No fever. No sniffles. No explanation. The pediatrician guessed anxiety. That didn’t seem right to Krysti, though. Ciri, then 8 years old, seemed so at ease in the second grade.
“In my gut, I knew there was something more going on,” says Krysti. Then, one night at bedtime, she watched with alarm as one of Ciri’s eyes rolled inward.
An eye doctor visit and a brain scan later, Ciri arrived by ambulance at Connecticut Children’s. She had a tumor the size of a lime in her brain. She needed brain surgery, the next day, to remove it.
Compassionate care for pediatric brain tumors
Ciri, who’s always been a brave kid, took the news calmly. For Krysti, privately, it was different.
“I was a mess,” says Krysti. Sitting in the colorful waiting area at Connecticut Children’s, she remembers feeling like a zombie.
It was pediatric neurosurgeon David S. Hersh, MD, who coaxed her out of it.
“Dr. Hersh sat down with us and went over the procedure, and he was just so compassionate and caring,” says Krysti. “Some doctors are so by the book, and you don’t understand half the things they’re saying. With Dr. Hersh, it felt like talking to a friend.”
Dr. Hersh shared a personal detail with Krysti and Ciri too: Ciri was the same age as his own daughter. He told them, “I’m going to take care of Ciri just as I would take care of my own daughter.”
What is the most common childhood brain tumor?
Close to 5,000 kids and teens in the U.S. are diagnosed with brain tumors each year. Thankfully, the most common type — and the type that Ciri had — is a pilocytic astrocytoma, which is benign and slow growing. Vomiting and severe headaches, especially in combination, can be red flags.
Even though it’s not cancerous, when it’s located in the back of the brain (like in Ciri’s case), this type of tumor can cause cerebrospinal fluid and pressure to build up in the brain, a life-threatening problem. Most of the time, the best treatment is surgery, as long as it can be done safely. Brain surgeries are among the most complicated and delicate in all of medicine — so Ciri needed experts with an extraordinary level of training, technology and teamwork.
“Medicine is a team sport, and we have an incredible team at Connecticut Children’s,” says Dr. Hersh. “We have three fellowship-trained, board-certified pediatric neurosurgeons, a dedicated OR team, and incredibly knowledgeable neuro-oncologists who guide the workup and treatment.”
And they don’t stop there. “Every member of our team is dedicated to helping patients and families through what can be a very scary experience with kindness and compassion,” he says.
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“Everywhere you turn [at Connecticut Children’s], you have a support system.”
Over several hours of surgery, Dr. Hersh and team were able to remove all of Ciri’s tumor. Throughout those long hours, Krysti remembers a series of people checking in on her. The surgical team sent real-time updates, using the EASE app. A security guard gently reminded her to eat. “Everywhere you turn, you have a support system,” Krysti says.
Then it was time for Ciri to begin the steep road to recovery.
Because the brain has trillions of neural connections, recovery is demanding for even the most precise brain surgery. As the brain heals, it can affect everything from motor skills to language. Ciri tackled the challenge with her usual bravery.
“She was up and walking with assistance within eight hours of surgery. You could tell on her face she was so determined to get back to where she was,” says Krysti.
Many physical therapists and occupational therapists were there to help, first in the hospital and then, when Ciri was strong enough to go home, back home in Canaan. Some of her favorite sessions took place in her grandparents’ pool, a physical therapist leading exercises from the other end of the Video Visit.
After four months, Ciri was back to her pre-surgery baseline.
And then she was flying high.
Flying high beyond imagination
Last year Ciri discovered gymnastics. She fell in love, and began channeling her focus and determination into training. She’s now an accomplished gymnast, perfecting tricky moves like roundoff back handsprings. For Krysti, cheering from the sidelines, seeing Ciri fly through the air is beyond imagination.
“It’s miraculous in a way,” says Krysti. “She had this long brain surgery, and you wouldn’t even know anything happened to her.”
Ciri remains tumor free, three years after her surgery. At this point, she only needs to come in once a year for brain imaging. That annual MRI often falls around Connecticut Children’s famed Superhero Day festivities in late April, when patients and team members dress up as superheroes.
“It seems like every time we talk to Dr. Hersh, he’s dressed up as a different superhero,” Krysti says, laughing.
“Like, Batman?” Ciri offers. She’s more into gymnastics and doting on her baby sister, Kora, than superhero movies, so she’s not 100% sure. Whoever Dr. Hersh is dressed as, she’ll always feel a close connection to him — and vice versa.
“Seeing Ciri living life as a normal 12-year-old is the biggest thrill in the world,” says Dr. Hersh. “Neurosurgeons train for years and make a lot of sacrifices along the way, but seeing patients like Ciri grow up makes it all worth it.”
Krysti is active on several Facebook support groups for childhood brain tumors, and when new parents join, she always recommends Connecticut Children’s: “This is one of the hardest things a parent and child can ever go through, but Connecticut Children’s is the best place you could possibly ask for,” she tells them.
As for Ciri, she has her own reassuring message.
“I want kids like me to know that you have nothing to worry about,” Ciri says. “Connecticut Children’s is a great place if you’re going through a hard time. Just try your hardest. And you’ll have a whole bunch of doctors and nurses to get you through it.”