Sam's Story

Sam Berman was a healthy, athletic eleven year old boy in September of 2005. He had been feeling a bit “off” for a few weeks but nothing severe. He woke up on September 20^th and complained of a severe headache, so Sam’s parents, Mary Jo and Paul, took him to the doctor who diagnosed him with a migraine. No matter what the Bermans did, the headache would not go away. “We knew something was wrong. He was just not himself,” says Mary Jo. Sam complained of dizziness and feeling a bit off balance after a few days, so the family went straight to the emergency room. The doctors there were puzzled, and after running a few tests, they diagnosed him with meningitis.

Over the next few hours his condition worsened and he began to experience double vision, loss of balance, ataxia, erratic eye movements and increased dizziness. Many tests were done to determine the cause of the meningitis, but in the end it was labeled aseptic meningitis. Once a very healthy and athletic boy, Sam left the hospital after a few weeks in a wheelchair, unable to walk and barely able to hold his head up. One of the ER nurses didn’t even recognize him when he left. He was totally dependent on his parents for all of his care.

The Bermans were devastated. The hope was that the ataxia would resolve in a few months. To try and help him get better, Sam endured over 1,000 physical and occupational therapy sessions over the next 18 months. Activities he would have enjoyed as an athletic boy, like horse back riding and swimming, were now used to help him regain his sense of balance. Sam graduated from a wheelchair to a walker in June of 2006, and was able to go back to school for half days in September. However, his balance never fully recovered. Some days were better than others.

In January of 2007, he developed another severe headache like the one in September of 2005. The Bermans once again went to the ER, where he was given IV fluids and some medication. He was once again diagnosed with a migraine.

In June of 2007, Sam became critically ill, complaining of a severe headache (same as earlier headaches), loss of swallowing, frequent urination, and stomach swelling. His blood work showed many abnormalities. He was immediately admitted to the A.I. DuPont Hospital where he stayed for 38 days. The stomach swelling turned out to be pneumatosis (air trapped in the bowel wall). Doctors ran a number of tests on him but were left baffled. They couldn’t quite connect the profound cerebellar ataxia with the pneumatosis. One of the blood tests showed that he had had mononucleosis in the past few months. Sam’s condition stabilized but he was still a very ill child with no answers. At this point he had lost about 15 pounds. He was transferred to the GI floor as it was thought it was some type of inflammatory bowel disease. Sam continued to complain of loss of swallowing, dizziness, full feeling in his stomach, and he would pass out when he stood up. One of the doctors during a physical exam felt a large mass deep under his left axillae. A biopsy was performed and a number of surprises revealed. Sam had Stage 4 Hodgkin’s lymphoma. One of the doctors mentioned that he felt Sam could have a paraneoplastic syndrome. He had never seen it before, but had read about it. This could explain Sam’s unusual neurological problems and the severe ataxia. The Bermans were shocked but relieved to finally have an answer and to have something tangible to fight against. Sam, of course, in his wisdom beyond his years said, “I felt it was cancer the whole time.”

After extensive research, by Sam’s oncologist to find an expert that specializes in this disease, he was seen by Dr. Josep Dalmau at the Abramson Cancer Center of the University of Pennsylvania. Dr. Dalmau was able to identify and isolate the antibody in Sam’s blood and spinal fluid. The hope was that with chemotherapy and radiation the cancer would be killed and Sam would regain his neurological functions.

Thanks to extensive care which included months of cancer treatment with chemotherapy and radiation, the Bermans and Dr. Dalmau got what they hoped for. His swallowing returned, his GI system works, his balance is better, and his shakiness greatly decreased. The ataxia he had in his speech is gone and his eyes no longer have the erratic movements. He looks and feels AWESOME!

“I feel much better now”, a healthier, happier Sam says. “I can walk straight and I can feed myself.” His father, Paul, adds that they watched Sam this summer, as he walked up to the pool, threw his walker aside and dove head first into the water. “It’s like he has a renewed sense of independence…it was great to see.” his father laughs, recalling the moment. “Sam teases us because we are always just watching him with beaming smiles.”

The Bermans state, “It is amazing that all this started with was a severe headache in the September of 2005. People still don’t believe it when we tell them it was cancer the whole time. We explain to them that this paraneoplastic syndrome is not well known and is something that most doctors are not familiar with. Had they been able to isolate the antibody, Sam would have been having blood work and PET scans every few months to catch the cancer at an earlier stage.” However, they realize that Sam’s experience is an opportunity to give a voice to a quiet disease and that the most important part of curing any disease starts with education.

When asked the one piece of advice the Bermans would give to parents struggling with unknown neurological symptoms, Paul & Mary Jo say, “Don’t give up. Keep searching for answers, because they are out there. To just be able to share Sam’s story is a start.”