In February 2005, our 13 year old son Matthew, a healthy soccer player and swimmer, started complaining of a major headache that was keeping him up at night and leaving him exhausted in the morning. Within ten days, we made three visits to our pediatrician. On the third visit, an MRI was ordered, and a tumor was seen on the scan.
That night, Matthew was admitted to Johns Hopkins Hospital. Two days later, he was diagnosed with a non-germinomatous (or mixed cell) germ (NGGCT) of the pineal region. The diagnosis was made based upon elevated AFP and bHCG levels in the blood and cerebrospinal fluid. Over the next few days, Matthew developed symptomatic hydrocephalus. He became increasingly lethargic, experienced double vision, and had difficulty keeping his eyes open. To relieve pressure in the brain, he had surgery for a third ventriculostomy, followed by placement of a VP shunt. Almost immediately thereafter, Matthew was enrolled in a Children’s Oncology Group (COG) protocol that involved six alternating cycles of carboplatin/etoposide and ifosafamide/etoposide. At the end of six chemotherapy cycles, the MRI, and tumor markers in the blood and spinal fluid looked normal, and we therefore started preparing cranio-spinal radiation, the next step of the protocol.
In February 2005, our 13 year old son Matthew, a healthy soccer player and swimmer, started complaining of a major headache that was keeping him up at night and leaving him exhausted in the morning. Within ten days, we made three visits to our pediatrician. On the third visit, an MRI was ordered, and a tumor was seen on the scan.
That night, Matthew was admitted to Johns Hopkins Hospital. Two days later, he was diagnosed with a non-germinomatous (or mixed cell) germ (NGGCT) of the pineal region. The diagnosis was made based upon elevated AFP and bHCG levels in the blood and cerebrospinal fluid. Over the next few days, Matthew developed symptomatic hydrocephalus. He became increasingly lethargic, experienced double vision, and had difficulty keeping his eyes open. To relieve pressure in the brain, he had surgery for a third ventriculostomy, followed by placement of a VP shunt. Almost immediately thereafter, Matthew was enrolled in a Children’s Oncology Group (COG) protocol that involved six alternating cycles of carboplatin/etoposide and ifosafamide/etoposide. At the end of six chemotherapy cycles, the MRI, and tumor markers in the blood and spinal fluid looked normal, and we therefore started preparing cranio-spinal radiation, the next step of the protocol.
Based upon earlier research, we had decided to have proton beam radiation at Mass General, convinced that this would deliver the maximum effective dose with the fewest short and long-term side effects. We flew to Boston for pre-radiation prep, including a routing planning MRI. Back home a few days later, we got grim results. Improbably, in just one week’s time, there were signs of tumor progression. Matthew was immediately placed on a salvage chemotherapy regimen to bring the tumor under control. He received two cycles of vinblastine, bleomycin and cyclophosphamide over the next two months. During this period he also had stem cells harvested, with the understanding that he would probably require a stem cell transplant down the line. After two rounds of salvage chemo, an MRI again showed disease progression. At that point, it was recommended that Matthew undergo a gross total tumor resection.
Surgery one week later at Johns Hopkins went beautifully with no complications. Matthew spoke to us as he was being wheeled out of the operating room! Three days later, he was home. Less than a week after that, we flew to Boston to begin six weeks of craniospinal proton beam radiation at Mass General. Matthew felt great through the treatments and had virtually no side effects. In between treatments, he even attended Brookline High School and took music classes. We did a lot of sightseeing and experienced the beautiful New England fall.
We came home from Boston just before Thanksgiving knowing that Matthew would require high-dose chemo with stem cell transplant. However, we hadn’t bargained on what we would learn next: Routine blood work showed abnormal tumor markers in the serum with normal markers in the spinal fluid. It appeared that there was now a second tumor site in his body. Although the doctors were initially surprised, they later determined that the VP shunt, placed at diagnosis to prevent hydrocephalus, had transported tumor cells from the brain down to the peritoneum. There were now nodules in the abdomen. At this point, we were told he needed to have not one, but two, stem cell transplants.
Matthew entered the hospital in mid-December 2005 and went through three days of high-dose chemo with carboplatin and etoposide, followed by stem cell transplant and approximately three weeks of recovery. Then he checked back into the hospital to repeat the entire process. We came home from the hospital in early March.
Since that time, Matthew has had monthly blood work, regular MRIs and spinal taps, and has remained disease-free. Having kept up with his studies through a combination of home and hospital tutoring, Matthew was finally able to return to school last fall, joining his 10th grade class.
Unfortunately, however, treatment was not without significant side effects. Two stem cell transplants with high-dose carboplatin left Matthew, a talented and aspiring musician, with progressive profound hearing loss in both ears. After months of frustration trying to get by with hearing aids, Matthew finally chose to have a cochlear implant last December. The device was turned on one month later, and the results exceeded expectation. His hearing is back to near-normal levels and he is once again able to participate comfortably in most settingsâ. and even enjoy music.
We are grateful to the medical teams at Johns Hopkins and Mass General who have cared for Matthew; to the doctors at Children’s National Medical Center, Children’s Hospital of Los Angeles and NYU Medical Center, as well as nutritionist Jeanne Wallace, who have consulted with us: to our wonderful circle of family, friends and neighbors who have supported us through this difficult time; and for the miraculous advances in scientific knowledge and medical technology that have supported Matthew’s recovery.
Written by Jaime Banks, Bethesda, Maryland. Before her son’s diagnosis, Jaime worked as a marketing consultant, specializing in health communications and patient education. 2007
This story was written for the Childhood Brain Tumor Foundation, Germantown, MD.
