Neuroblastoma is a type of solid tumor that occurs in the developing cells of the sympathetic nervous system. The sympathetic nervous system is a nerve network that carries messages throughout the body. Sympathetic nerves are responsible for actions of the body that are not under voluntary control, such as increasing heart rate, blushing, and dilating the pupils of the eye. Neuroblastoma begins when a change or mutation occurs in a young cell of the sympathetic nervous system, known as a neuroblast. The change allows neuroblasts to grow uncontrollably and form cancerous tumors. Neuroblastoma can begin anywhere in the body, but is most commonly found in the adrenal gland, located on top of the kidney. Other common locations for neuroblastoma include the neck, chest, abdomen, and pelvis, near the spine. Neuroblastoma can spread to other areas of the body, including the bone marrow, bones, and lymph nodes. Neuroblastoma usually occurs in infants and young children. It is uncommon in older children and teenagers. About 7 out of every 100 children with cancer will have neuroblastoma.

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.

Isabella Santos

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.

Ethen’s Fight

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.

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