What is the Neuroblastoma Program?

Seattle Children’s Neuroblastoma Program cares for infants, children, teens and young adults with cancer that starts in young nerve cells. We provide expert care for children who are newly diagnosed, who are already getting treatment or whose neuroblastoma has returned (recurrent). Our patients have the chance to get the very latest treatment options being studied.

What’s special about the Neuroblastoma Program at Seattle Children’s?

Seattle Children’s has many years of experience treating babies, children and teens with neuroblastoma. We also are leaders in finding new, better treatments with fewer side effects.

The experts you need are here

Dr. Julie R. Park is a national leader in caring for children with neuroblastoma and developing new treatments for children at all stages of the disease. The focus of her research is on finding therapies to improve the treatment for children with high-risk neuroblastoma.

She led the most recent national Children’s Oncology Group (COG) trial for high-risk neuroblastoma and chairs the COG neuroblastoma committee. COG is an international organization of childhood cancer specialists that studies many forms of childhood cancer. By working together, COG members can find promising new treatments sooner.

We are national leaders in research to improve outcomes

Seattle Children’s is the only center in the Pacific Northwest that belongs to the NANT (New Approaches to Neuroblastoma Therapy) group. NANT works to find new treatments for patients whose neuroblastoma has not fully responded to their first treatment (refractory) or that has grown back (recurrent). We are leading national clinical trials to study how to improve the outcome for children with neuroblastoma.

Clinical trials offer your child more treatment options

Many of our patients with neuroblastoma take part in clinical trials. These research studies give children the chance to get the very latest treatment options being explored. These options are not offered at all treatment centers. The team at Seattle Children’s will talk with you about any studies with treatments that may help your child.

One of the options is a clinical trial testing T-cell therapy in young people with high-risk neuroblastoma that does not respond well to early treatment or that comes back. This therapy reprograms the body’s own infection-fighting T-cells to find and destroy cancer cells. This phase 1 trial is called Engineered Neuroblastoma Cellular Immunotherapy (ENCIT)-01.

Children with high-risk recurrent or refractory neuroblastoma may be able to have a newer type of radiation therapy. It is called I-131-MIBG. This is a way to get radiation inside your child’s body and into their cancer cells via the bloodstream versus sending a beam of radiation to one spot.

How does Seattle Children’s treat children with neuroblastoma?

Everyone in the Neuroblastoma Program works to cure your child’s disease, support your family during treatment and provide follow-up care. Your child’s team includes doctors, nurses and caring experts in child life, nutrition support and other services. Our entire focus is on helping your child beat their disease and thrive.

We offer the following treatments, tailored to your child’s needs.

Surgery

Children with neuroblastoma usually have surgery. Doctors will remove as much of the tumor as is safely possible. Surgery may be combined with other treatments.

Chemotherapy

Chemotherapy means giving medicines that go through the bloodstream to kill cancer cells throughout your child’s body. The exact mix of medicines and how long they are given depend on the type of neuroblastoma your child has. Researchers are studying new mixes of medicines to find which work best against each type of the disease.

Radiation therapy

Your child’s doctors may suggest treating your child’s neuroblastoma with radiation therapy. With external radiation, a machine sends a dose of radiation through the skin and outer structures into deeper parts of the body. The radiation kills cancer cells and shrinks tumors. Usually patients receive strong X-rays, which are made of light particles called photons. In certain cases patients receive proton radiation. It is a more precise type of radiation that uses beams of protons instead of photons.

Children with high-risk neuroblastoma that has come back after treatment or that does not respond well to their first treatment may be able to have a newer type of radiation therapy. It is called I-131-MIBG therapy. This is a way to deliver radiation directly to tumors via the bloodstream.

Hematopoietic cell transplant, or stem cell transplant

Children with high-risk neuroblastoma may have high doses of chemotherapy medicines combined with a hematopoietic cell, or stem cell, transplant. Getting stem cells after the high-dose chemo helps restart the child’s stem cell production. Doctors remove the stem cells from your child before chemotherapy. The cells are frozen and stored. Later they are returned to the child’s body through a vein. We have one of the world’s largest stem cell transplant centers.

Immunotherapy

Immunotherapy uses the body’s own immune system to fight cancer. One method is the monoclonal antibody called ch14.18. This is when one specific antibody is reprogrammed and cloned to attack a cell. It is used after a stem cell transplant. The antibody targets a substance on neuroblastoma cells and triggers the immune system to kill them. A different type of immunotherapy is being studied for neuroblastoma that is tough to treat or that comes back. It is called T-cell therapy. This reprograms the body’s infection-fighting T cells to find and destroy cancer cells. The phase 1 clinical trial is known as Engineered Neuroblastoma Cellular Immunotherapy (ENCIT)-01.

How can I get an appointment?

Contact the Cancer and Blood Disorders Center at 206-987-2106 for a referral, a second opinion or more information.If you already have an appointment, see what to expect while your child is treated here.

Who’s on the team?

Meet the experts who care for young people in our Neuroblastoma Program. We work together and with you to give your child the best treatment.

Hematologist-oncologists

Our Neuroblastoma Program is led by doctors with special training in diagnosing, treating and preventing blood diseases and cancers. That branch of medicine is called hematology-oncology.

Nuclear medicine doctors

Our team includes doctors specially trained in nuclear medicine. That branch of medicine uses radioactive substances to diagnose, treat and research illness.

Radiation oncologist

Our radiation oncologist is highly trained in using radiation therapy to treat cancer, tumors and other diseases.

Surgeons

Our surgeons determine if surgery is need, recommend what type will help the most, and perform surgical procedures. Because growing bodies are different from adult bodies, all of our surgeons are board certified or eligible for certification in pediatric surgery.

Nurse practitioners

Our nurse practitioners coordinate care for patients and communication between all members of the Children's Neuroblastoma Program team. They are usually the first contact for referring physicians, team physicians and patients.

Nuclear medicine technologist

Our nuclear medicine technologist prepares radioactive material for patients undergoing scans in order to create images of internal parts of the body.

  • Lisa Aldape, CNMT

Radiation safety officer

To protect the safety of our patients and staff, our radiation safety officer tests for levels of radiation exposure and oversees the use of radiation for diagnosis and treatment.

  • Barb Michieli, MS

Social worker

Our social worker is here for you throughout your child's treatment for emotional and practical support. She coordinates care between families, the community and the medical team, and helps your family get the resources you need.

  • Ashlei Brooks, MSW

Resources

You and your family may find helpful information at these links and in this video.