Last updated: 3/4/2007
At age 13 ½, our son Matthew, a previously healthy, athletic young man, started complaining of a major headache that kept him up at night and left him exhausted in the morning. Within 10 days, we made three visits to the pediatrician. On the third visit, an MRI was ordered, and a tumor showed up on the scan.
That night, we checked into the hospital. Two days later, Matthew was diagnosed with a nongerminomatous germ cell tumor (NGGCT) based on elevated AFP and bHCG in the blood and CSF. Over the next few days, Matthew developed symptomatic hydrocephalus. He became increasingly lethargic, experienced double vision, and had difficulty keeping his eyes open. He received a third ventriculostomy, followed by a VP shunt to relieve the hydrocephalus. Almost immediately thereafter, Matthew started chemotherapy on Children’s Oncology Group (COG) protocol ACNS0122 (A Phase II Study to Assess the Ability of Neoadjuvant Chemotherapy +/- Second Look Surgery To Eliminate All Measurable Disease Prior to Radiotherapy For NGGCT) , which involved six alternating cycles of carboplatin/VP16 and ifosfamide/VP16. At the end of six cycles, the MRI, and the tumor markers in the blood and spinal fluid all looked normal. We started preparing to move ahead to the next step on the protocol, craniospinal radiation.
Based upon our earlier research, we had decided to do 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 routine 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 given two cycles of salvage chemotherapy with vinblastine, bleomycin and cyclophosphamide over the next two months. He had stem cells harvested, with the understanding that he would probably require a 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 went smoothly and with no side effects. 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 treatment and had virtually no side effects.
We came home from Boston knowing Matthew needed to have an additional stage of treatment – high-dose chemo with stem cell transplant. However we didn't bargain on what we found next: Routine blood work showed abnormal tumor markers in the serum with normal markers in the CSF. It appeared that there was now a second tumor site in the body. Although the doctors initially disputed this could happen, we 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 back to back. We entered the hospital in 12/05, went through one stem cell transplant, checked out of the hospital for a week or so and then returned to do it all over again. We came home from the hospital in early March.
Since that time, we have been going for monthly blood work and three-month MRIs and LPs. Matthew has remained disease-free for just over a year now. He's feeling very well physically – has regained his weight (but not his hair) and returned to school after missing three semesters. The big hit has been his hearing. Two rounds of high-dose carboplatin left him with profound hearing loss in both ears. After months of frustration trying to get by with hearing aids, Matthew finally opted to have a cochlear implant. His surgery was in late December and the device was turned on just two weeks ago. The results have been amazing - his hearing is back to near-normal levels and his whole outlook has changed. We are grateful for Matthew's current wellbeing and hopeful for continuing good health.
I am currently working with other moms to develop a website that will support other families whose children are diagnosed with germ cell tumors (both germinoma and nongerminomatous). The website can be found at: http://health.groups.yahoo.com/group/germcell.
Written by Jaime B. (2/07)
