Neuroblastoma occurs in the developing cells of the sympathetic nervous system which is responsible for involuntary actions of the body, such as blushing, increasing heart rate, and dilating the pupils of the eye. The majority of neuroblastoma tumors (65%) are located above the kidney. However, tumors can begin anywhere in the body. Other common sites are the chest, neck or pelvis. The disease often spreads from its “primary” location to the bone marrow, bones or lymph nodes.
The Isabella Santos Foundation (ISF) is committed to improving rare pediatric cancer treatment options in an effort to increase survival rates of kids with cancer so they can live their dreams. Our partnership with Levine Children’s Hospital will fund and create the ISF Rare and Solid Tumor Program. This $5 million initiative will be designed to research and treat a wide range of deadly pediatric cancers while allowing the hospital to expand their clinical trials and provide extraordinary patient experience for all children and families with rare and solid tumors.
Childhood Cancer – The Facts and Reality
Cancer is the leading cause of death by disease among U.S. children.
- Neuroblastoma affects approximately 700 children a year and is most commonly found in children under the age of 5.
- Neuroblastoma is a rare cancer of the sympathetic nervous system, a nerve network that carries messages from the brain throughout the body.
- Most neuroblastoma begins in the abdomen in the adrenal gland, next to the spinal cord, or in the chest.
- Neuroblastoma can spread to the bones, bone marrow, brain, spine, liver, lymph nodes, skin and around the eyes.
- Neuroblastoma has one of the lowest survival rates of all pediatric cancers and accounts for 15% of all pediatric cancer deaths.The first symptoms are often vague and may include fatigue and loss of appetite which is why it can be hard to diagnose.
- 70% of cases at diagnosis have already spread to other areas of the body which places the cancer in a Stage 4 category.
- The 5 year survival rate for Stage 4 Neuroblastoma is 30%.
- 60% of patients with Neuroblastoma will relapse. Once in relapse, the survival rate drops to less than 5%.
- There are no known cures for relapsed Neuroblastoma.
- Neuroblastoma has one of the lowest survival rates of all pediatric cancers and accounts for 15% of all pediatric cancer deaths.
- Childhood cancers, like Neuroblastoma, fall into the rare category.
- There will be approximately 10,380 new cases of pediatric cancer diagnosed in children under 15 in 2015;
- Cancer is the leading cause of death by disease among U.S. children and the second leading cause of death in children (after accidents)
- The National Cancer Institute’s (NCI) investment in pediatric cancers was $195.5 million in 2011, while its investment for breast cancer research that year was $625 million.
- About 1,250 children younger than 15 years old are expected to die from cancer in 2015.
- Approximately half of the oncology drugs to treat children are at least 20 years old.
- A large part of the funding for Neuroblastoma treatments, and other rare pediatric cancers, are made possible through private institutions, generous donors, and families of children with Neuroblastoma.
It started with a girl… and she is changing the world…
On March 9th, 2005, Isabella Joanne Santos came into the world. Her first two years were filled with memories and milestones just like every other child. In the summer of 2007, she began to complain of frequent back and stomach pain. After months of misdiagnosis, an MRI revealed a tumor in her abdomen and showed the disease had spread to her bone marrow. On October 4, 2007, she was diagnosed with stage 4 high-risk neuroblastoma.
In early April 2017, Ethen was diagnosed with stage 4 high-risk neuroblastoma at 13 months old. After five rounds of chemo, Ethen had surgery to remove the remainder of the tumor in his abdomen and chest. He then had a stem cell transplant, 2½ weeks of radiation, and began antibody therapy. He made it through two out of five rounds of treatment in the hospital.