Zachary Bartz had a disease called neurofibromatosis. Neurofibromatosis Type 1 (NF1) is a genetic congenital disorder that predisposes afflicted individuals to tumors of the central nervous system and the peripheral nerves. More than 80,000 people live with NF throughout the United States.
Observations regarding tumor development in neurofibromatosis have led to important insights regarding brain tumors in the general population. The causes of NF1 remain largely unknown, making this research effort even more important. Neurofibromatosis can cause: brain tumors, deafness, learning disabilities, facial disfigurement, cancer, and optic gliomas.
SOURCE OF INFORMATION: NATIONAL CANCER INSTITUTE
Cancer continues to be the leading disease-related cause of death among children and adolescents in the United States. Although cancer in children is rare, it is the leading cause of death by disease past infancy among children in the United States. In 2014, it was estimated that 15,780 children and adolescents ages 0 to 19 years would be diagnosed with cancer and 1,960 would die of the disease in the United States.
The most common types of cancer diagnosed in children and adolescents are leukemia,brain and other central nervous system tumors, lymphoma, rhabdomyosarcoma, neuroblastoma, Wilms tumor, bone cancer, and gonadal (testicular and ovarian) germ cell tumors.
As of January 1, 2010, there were approximately 380,000 survivors of childhood and adolescent cancer (diagnosed at ages 0 to 19 years) alive in the United States. The number of survivors will continue to increase, given that the incidence of childhood cancer has been rising slightly in recent decades and that survival rates overall are improving.
Nearly 2,000 children die of cancer each year in the United States, indicating that new advances and continued research to identify effective treatments are required to further reduce childhood cancer mortality.
Children who have cancer are often treated at a children’s cancer center, which is a hospital or a unit within a hospital that specializes in diagnosing and treating children and adolescents who have cancer. Most children’s cancer centers treat patients up to 20 years of age. The health professionals at these centers have specific training and expertise to provide comprehensive care for children, adolescents, and their families.
Children’s cancer centers also participate in clinical trials. The improvements in survival for children with cancer that have occurred over the past half century have been achieved because of treatment advances that were studied and proven to be effective in clinical trials.
Survivors of childhood cancer need follow-up care and enhanced medical surveillance for the rest of their lives because of the risk of complications that can occur many years after they complete treatment for their cancer. Health problems that develop months or years after treatment has ended are known as late effects.
Indeed, long-term follow-up analysis of a cohort of survivors of childhood cancer treated between 1970 and 1986 has shown that cancer survivors remain at risk of complications and premature death as they age, with more than half of survivors having experienced a severe or disabling complication or even death by the time they reach age 50 years. It is not known whether children treated in more recent periods will experience similar risks of late complications.
The specific late effects that a person who was treated for childhood cancer might experience depend on the type and location of his or her cancer, the type of treatment he or she received, and patient-related factors, such as age at diagnosis.
Children who were treated for bone cancer, brain tumors, and Hodgkin lymphoma, or who received radiation to their chest, abdomen, or pelvis, have the highest risk of serious late effects from their cancer treatment, including second cancers, joint replacement, hearing loss, and congestive heart failure.