LOS ANGELES (January 26, 2000) -- Westlake Village eighth-grader Matthew Howard sometimes does his own research on the Internet, viewing images of brain tumors like the one he was diagnosed with when he was just five years old. "Sometimes I put my hands on my head -- I know where the tumor is and I wish I could just grab it out. It's kind of frustrating," he says.
It's been nearly nine years since Matthew was diagnosed with a large, non-malignant brain tumor. When his parents, Suzanne and Clint Howard, received the diagnosis, they were understandably shocked. "We didn't know anyone who had gone through this before," recalls Suzanne of that troubling diagnosis. "Of course, we talked to the doctors, but we wanted to learn more about Matthew's condition. We didn't have a computer or the Internet then, and we just fumbled around for information."
The Howards are not alone -- as with other patients and families faced with a diagnosis of brain tumor, knowledge can be a lifeline to hope, courage and patience. This awareness has prompted the Cedars-Sinai Maxine Dunitz Neurosurgical Institute to host its first Patient/Family Brain Tumor Conference from 10 a.m. to 4:45 p.m. Feb. 19 in the Harvey Morse Auditorium.
New research and treatments, legal resources and support services will be the focus of the free conference, designed for brain tumor patients, their families and the interested public. During a complimentary luncheon, participants will have the opportunity to address questions to a panel of medical experts.
"This conference will offer a comprehensive spectrum of information on brain cancer research and current treatment approaches as well as potential therapies for the future," explains Keith L. Black, M.D., director, Neurosurgical Institute and Division of Neurosurgery at Cedars-Sinai.
Conference topics include New Research for New Treatments, Treatment for Children's Brain Tumors, Brain Tumor Treatment in the New Millennium and Integrative Medicine. Also planned is Legal Issues Update: Workplace, Insurance, Government Benefits; Managing Fatigue; and Coping with Brain Tumor Diagnosis and Treatment.
"We want to empower our brain tumor patients and their caregivers by providing them with the information and support necessary to best manage their condition," says conference co-coordinator Felicia Boyd, program coordinator at the Institute. "Our goal is also to provide reassurance that progress is being made through research and that there are health and community resources available to maximize patients' treatment and recovery."
In addition to Dr. Black, speakers will be John S. Yu, M.D., co-director, Comprehensive Brain Tumor Program, and program director, Stereotactic Radiosurgery, Neurosurgical Institute; Paul Zeltzer, M.D., neurooncologist, Neurosurgical Institute; Mary Hardy, M.D., medical director, Cedars-Sinai Integrative Medicine Medical Group; Barbara Ullman Schwerin, Esq., director, The Cancer Legal Resource Center; Thomas Apostle, D.O., Post Acute Services, Cedars-Sinai; Linda Squire, L.C.S.W., social worker, Neurosurgical Institute; Michael States, director, The Wellness Community-West Los Angeles; and moderator Solomon Hamberg, M.D., Ph.D.
"The conference will also provide an opportunity for patients and their families to network with each other as well as to direct questions to the physicians and other conference presenters," explains co-coordinator Squire, adding that patient education materials will also be available to participants.
Matthew Howard was just four years old when he began to experience headaches and occasional vomiting. Then living in Virginia, the family took Matthew to a pediatrician, who felt Tylenol was effective and that no other tests were necessary. In May 1991, the Howards moved to Los Angeles, where they consulted another pediatrician about Matthew's increasingly frequent headaches and vomiting. An MRI was ordered, though the doctor commented that he was "98 percent sure" it would reveal nothing. "Well, it turned out to be something -- something big," recalls Matthew. "It was a three centimeter tumor in my brain. I was admitted to the hospital that night."
The diagnosis was a carniopharygioma -- a non-malignant brain tumor that develops in vitro in approximately one in 200,000 children. Located behind the optic nerve, the tumor was inhibiting the flow of spinal fluid, causing the headaches that plagued Matthew. Since June 1991, the youngster has undergone three subfrontal craniotomies, two transnasal transphenoidals, placement of a shunt and six weeks of radiation therapy, which he completed in December 1998.
Along the way, the Howards found some comfort and information through participation with parent support groups. "It was really helpful to realize there were other families out there going through similar experiences," says Suzanne.
After Matthew's surgery in 1994, he was tumor free for three years, and then his symptoms reappeared. "We were in total disbelief. How could this happen again? It was a nightmare," remembers Matthew.
"Soon after, my mom came across a special issue of Time magazine, 'Heroes of Medicine,' that featured many of the special procedures performed by Dr. Black on patients no other doctor would take a chance on. We needed a hero in the worst way...and we were hoping for a miracle."
An appointment was made with Dr. Black, who recommended radiation therapy for Matthew. Though there was no "magic cure," as Matthew hoped, there is now renewed optimism. An MRI in August 1999 revealed that the tumor appeared to be shrinking, and subsequent eye examinations have shown no increased pressure on the optic nerve. "We're keeping our fingers crossed," Matthew adds.
Matthew's advice to others: "Roll with punches." And he offers a "little trick" to take the sting out of blood draws -- a topical anesthetic called Emla.
"I know I have many challenges ahead," says the articulate 13-year-old, whose outgoing nature has brought him a number of acting jobs. "You can understand why -- as I look to the future -- I hope research and development provides me with the opportunity to live a long life and contribute all I can."
For more information or to register for the conference, call Cedars On Call at 1 (800) CEDARS-1 (1-800-233-2771). Free parking is available for those attending the conference.
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