C.J. inherited the disease from his mother, Kathy, whose father, Arthur, also lives with neurofibromatosis. Both Kathy and Arthur display the most common signs of the disease, non-cancerous tumors covering their skin.
C.J.'s symptoms are different. His tumors are inside his brain. One grows behind each eye, one on the brain stem and four in the mid-brain.
Almost every Thursday for three years, C.J. has travelled with his grandfather and mother from the family's home in Culpeper, Va. to Washington, D.C. for chemotherapy treatments. The family has witnessed C.J. take a nearly endless stream of "last resort" drugs as each new treatment fails to shrink the tumors.
The family continues to press on though, always in the face of both medical and financial troubles, bolstered by C.J.'s infectious positive attitude and Kathy's mantra of taking things "one day at a time."
Kathy Sutphin shows signs of fatigue as she stands beside her son, C.J., while he sleeps at Children's National Medical Center in Washington, D.C. last week. During a recent trip, C.J. underwent an MRI to determine the effects of a new drug on the tumors on his brain. Unfortunately the Tarceva eventually proved ineffective as the tumors grew, and now C.J. is currently on another drug.
Kathy and Charles Sutphin kiss in the kitchen on Thanksgiving Day. The pair rarely see each other because of Charle's hectic work schedule. After a quick bite with the family, Charles was once again off to work at the gas station after a night stocking at the grocery store.
CJ has a great deal of trouble walking, but still finds a way to move about the house either bracing himself on objects or simply crawling. Often he holds plastic wrapped objects, anything from syringes to gum to the occasional pack of cigarettes - anything that makes that particular sound and texture of the plastic wrap.
Doctors believe that the tumor's in C.J.'s brain are slowly making him go blind. Doctors also believe that they have developmentally delayed the five-year-old to the level of approximately 18-months.
Kathy Sutphin administers the chemotherapy drug Tarceva to her son C.J. through his Mickey Button for the first time in their Culpeper, Va. townhome. Neurofibromatosis is a hereditary, genetic disorder, and C.J. received the disease from his mother, Kathy. Her father, Arthur, passed it to her. Neurofibromatosis is most often associated with the tumors that develop on sufferers' skin as is evident on Kathy's. C.J.'s tumors happen to be inside his brain instead.
C.J. and Kathy Sutphin laugh at the IHOP in Gainesville, Va. where the family stops every Thursday on their way home from the hospital. Wherever C.J. goes during the Thursday routine, the family finds itself on a first name basis with everyone. Much of that comes from "the C.J. look," the name for C.J.'s well known smile coined by hospital nurses and now expected by everyone from the IHOP waiters to hospital staff that see him every Thursday.
Kathy Sutphin shows what $4000 worth of her son C.J.'s pills is comprised of. It is the first day Kathy will grind up a tablet of Tarceva and administer it to C.J. Kathy was overjoyed to find out that FAMIS approved their use of the drug. Pictured is a one month supply, administered a pill a day. Kathy and her husband, Charles, both work to support their family of 5. Kathy running a daycare center from their townhome, and Charles working during the day at a gas station, and overnight stocking shelves at a local grocery store. Neither of his jobs qualify the family for health insurance.
C.J.'s mother Kathy Sutphin looks over papers outlining a new, experimental chemotherapy drug doctors would like to start C.J. on while C.J.'s grandfather, Arthur Sutphin waits. Because of the spiraling, intertwining nature of C.J.'s tumors, they are entirely inoperable. C.J. has been on several different chemotherapy drugs over the years, and while some have slowed the tumors' growth, none have ever shrunk them. This new drug, Tarceva, would allow Kathy to administer the drug to C.J. at home. Every drug seems to be the last resort, Kathy says.
Dr. Packard, a Children's Hospital Neurologist, examines C.J.'s reflexes and eyesight with a sock puppet during a September hospital visit. Dr. Packard originally diagnosed C.J.'s brain tumors on Christmas Eve 2004 in Charlottesville, Va. where the Sutphin family had taken C.J. for a second opinion about what appeared to be a lazy eye. Dr. Packard identified a large tumor growing behind C.J.'s eye. The tumor turned out to be just one of seven.
C.J. Sutphin plays in his pre-Kindergarten class at A.G. Richardson Elementary School. Sutphin attends the Special Education pre-Kindergarten class just Monday through Wednesday. 
Kathy and one of her daycare kids, Elizabeth, talk to C.J. after he receives his medicine. C.J. receives most of his nourishment and medicines through the stomach port, including a nightly feeding while he sleeps. The great advantage of the new chemotherapy drug, is that after almost three years of weekly trips to Washington, D.C., Kathy can now administer the treatment herself at home.
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