A Parent's Worst Nightmare: Five-Year-Old Develops Rare Brain Cyst
Grateful Dad Will Run the L.A. Marathon Hoping to Raise Money and Awareness for Pediatric Brain Tumor Research at Cedars-Sinai
Los Angeles - March 11, 2010 – On March 21, Benny Zafrani will be running the Los Angeles Marathon. That, by itself, is not remarkable – after all, thousands of others will be doing the same thing. However, Benny is on a mission to raise funds for pediatric brain tumor research. And his mission was spurred by personal experience.
It started out innocuously enough last August. Benny and wife Annah, along with their two children, 8-1/2-year-old Nico and five-year-old Cody, were enjoying a summer trip to Mammoth Mountain, a popular resort located several hours North of Los Angeles. On the second day of the trip, Cody woke up with a low fever. As the day wore on, his parents noticed that he wasn’t his usual energetic self, and not even the excitement of the trip could spark his interest. In fact, he complained of a headache and just wanted to lie down.
Concerned, Benny and Annah decided to cut short the family vacation and head back home. There, they called Annah’s sister, a physician, and explained Cody’s strange symptoms. She suggested that they take Cody to a local urgent care facility. By then, they were having difficulty rousing him from his sleep, and when he did wake up, he complained of a severe headache.
At the urgent care facility, doctors seemed perplexed but not overly concerned, and sent him home, suggesting that he see a pediatrician the next day. When Cody awakened the following morning, he was still complaining of a headache, very lethargic, and wanted only to lie down. Benny and Annah rushed him to his pediatrician’s office. After a routine check-up, a CT Scan was done at a local hospital. The scan showed some inflammation in the kindergartener’s head, and the pediatrician decided to transfer him to Cedars-Sinai Medical Center for an MRI.
“Now, we were panicked,” Annah remembers.
The MRI revealed a mass in Cody’s brain. He was also diagnosed with severe hydrocephalus, a condition in which too much fluid has accumulated in the brain. This was resulting in harmful pressure to Cody’s brain tissues. To relieve the pressure, Moise Danielpour, M.D., director of Pediatric Neurosurgery Program at Cedars-Sinai, inserted a temporary catheter to drain the excess fluid that had built up. A second MRI was then done and after reviewing it, doctors decided that surgery was needed.
At 7 a.m. on August 14, Benny and Annah watched their son being wheeled into the operating room for brain surgery. Doctors estimated that the surgery would take anywhere from four to seven hours.
“It was a parent’s worst nightmare,” says Annah. “We didn’t know what the doctors would find. We knew there were several possibilities, and none of them were good – a brain parasite, a tumor or something else.”
Regular reports from the operating room, kept Benny and Annah apprised of the surgeons’ progress.
- 8 a.m. – Cody was under anesthesia and ready for surgery.
- 9:45 a.m. – The doctor was finishing up and would come out and talk to them when he was done.
- 10:45 a.m. – Dr. Danielpour walked into the room.
“It had been the longest hour of our lives,” says Benny.
But one look at the doctor’s face told them what they wanted to know.
“You won the lottery!” Danielpour said with a big smile.
He then explained that Cody had a cyst that was blocking the normal pathways in the brain. This was causing fluid to build in the center of his brain. Because of where the cyst was located, he was unable to remove it, but he was able to deflate it, hoping that after a few days the fluid would resume its normal path.
In addition, he had opened the cyst’s cell walls widely so it could drain continuously. This would help prevent scarring of the tissue which could result in the development of another cyst.
Now the concern was, would Cody wake up, recognize his parents and know where he was?
The answer to those questions was “yes,” and after a few days in Intensive Care – with Annah sleeping on a cot beside him every night – Cody underwent an MRI which confirmed that the procedure had been successful.
However, as a precaution, MRIs were scheduled for every three months to be sure the cyst was not recurring. But this past December, the results were so good that Danielpour gave him a clean bill of health for an entire year. So instead of going for another MRI this month, Cody will be celebrating his sixth birthday – and cheering for his dad as he runs the marathon.
Although they are profoundly grateful for Cody’s outcome, Annah and Benny are well aware that many families are not as fortunate. And they are determined to reach out in meaningful ways to help such families.
“Dr. Danielpour is an amazing person; not just an amazing doctor,” says Annah. “Benny will be running the L.A. Marathon on March 21 to raise funds in support of his remarkable team of doctors that have been so vital to Cody’s treatment,” she added. “These doctors are engaged in cutting-edge research that has tremendous potential to make a critical difference for other children with brain tumors. They are developing therapeutic approaches to treat – and eventually, to cure – brain cancer, the leading tumor cause of death in children.”
Benny agrees. “As a parent, it’s difficult to express the depth of my gratitude for Cody’s continued good health. There is nothing more difficult than watching your child suffer – and nothing more thrilling than watching him get well. My goal is to give other parents and children that chance by helping to raise funds for pediatric brain tumor research.”