Lenn Brown was an active 13-year-old boy, enjoying life on the soccer field and the basketball court in his native Rockaway, New Jersey. It was during a soccer game, however, after a scramble with the goalkeeper and a subsequent fall, that the world suddenly “flip flopped”. According to Brown, “It looked like the ground was in the sky and the sky was on the ground.”
He recovered on the sideline and felt fine until it happened again a month later playing basketball. The dizzy spells increased over time, even when he lay flat in bed. He was forced to sleep with several pillows to elevate his head. He repeatedly complained to his parents that surely something was wrong.
Eventually, doctors’ appointments led to diagnostic tests. An initial CT scan showed nothing wrong, but an MRI revealed an entirely different story. Following the MRI, his doctor told Brown and his parents that they needed to see Dr. Arno Fried “right away”.
Brown, his parents and his sister all went to Dr. Fried’s office. Brown still recalls the day his parents were told, “Your son has a brain tumor.” Brown relates his first encounter with Dr. Fried as a mystical experience. “I saw a glow or some kind of light coming off his head. I just knew he was going to help me.”
Initially, Brown’s parents were apprehensive. They approached Dr. Fried and asked, “Are we bad parents for not going to New York to look for Dr. God?” Dr. Fried encouraged them to check his record on the scores of surgeries he had done for this brain tumor, a medulloblastoma. “I’m the one you want operating on your son,” he assured them. Brown clearly remembers that date: December 22, 2008. Four days later, he had surgery.
Relates Brown, “When Dr. Fried told me I had a tumor, I was relieved just to know what it was, that there was a name for it. He just made it seem like everything was going to be okay. He had a positive confidence. He vowed to give it his all. I wasn’t worried. He made me feel that everything was going to be fine.”
Dr. Arno Fried has extensive experience in both pediatric and adult brain tumors. He and his colleagues at Advanced Neurosurgery Associates were one of the first groups in the region to utilize minimally invasive approaches in neurosurgery, including using an intracranial endoscope for the treatment of brain tumors.
About 400 new patients – primarily children, but also adults – are diagnosed in the U.S. each year with a medulloblastoma. According to Cancer.net, about 18 percent of childhood brain tumors are medulloblastoma. The overall five-year survival rate is defined as the percentage of people who survive at least five years after the tumor is found. For children with medulloblastoma, this survival rate also depends on several factors, including the risk level for this disease and the child’s age when diagnosed.
Overall, the five-year survival rate for children with average-risk disease is 70 to 80 percent. For children with high-risk disease, the rate is about 60 to 65 percent. If the child is an infant and the disease is localized, the survival rate is between 30 and 50 percent.
Like many tumor types, the exact cause of medulloblastoma is not known. However, scientists are making significant strides in understanding the biology of this tumor. Changes have been identified in genes and chromosomes (the cell’s DNA blueprints) that may play a role in the development of this tumor. There are also a few rare, genetic health syndromes that are associated with increased risk for developing a medulloblastoma.
Lenn Brown says Dr. Fried was amazed (and that Brown was lucky) that the tumor was discovered at the size of a walnut. Usually, the tumor is the size of an orange or even larger. Brown says Dr. Fried said it was good that I was “in touch with my body”.
Dr. Fried removed the entire tumor in the surgery, and subsequently Brown underwent a year-and-a half of chemotherapy and 30 rounds of radiation.
Today, the 19 year old is a rising sophomore at Syracuse University (“The school of my dreams”) in the Whitman School of Management and a student manager on the famed Syracuse Orange basketball team.
Psychologists have coined the term “post-traumatic growth”, a counter result to post-traumatic stress syndrome, to describe the wisdom and personal growth one may undergo following a traumatic experience. Lenn Brown is certainly an example. When asked what he wants to do with his college career, unlike most teenagers who may relate their career goals, he has a sage response:
“The most important thing is to live life to the fullest, and to make every day the best it can possibly be.”