Neuroblastoma is a cancer that starts in very young nerve cells. These young nerve cells are called “neuroblasts.” They are baby cells of the sympathetic nervous system. This is the body system that helps control blood pressure, heart rate, stress response, and the “fight-or-flight” reaction. These baby nerve cells normally mature and stop dividing after birth. In neuroblastoma, some of these cells do not mature. They keep dividing. They form a lump or mass called a tumor.
Neuroblastoma usually starts in the adrenal glands. The adrenal glands sit on top of each kidney. These glands make stress hormones. The tumor can also start in nerve tissue in the neck, chest, belly, or pelvis. The tumor can spread (metastasize) to bone, bone marrow, liver, lymph nodes, skin, and other organs.
Neuroblastoma mainly affects babies and young children. Most children are diagnosed before age five. It is rare in teenagers and very rare in adults. Some tumors grow slowly and may even shrink on their own in infants. Some tumors grow fast and need strong treatment right away. Doctors sort tumors into “risk groups” to match treatment to how risky the tumor looks. Risk is based on the child’s age, the tumor’s size and spread, how the tumor looks under the microscope, and special gene changes inside the tumor.
How does neuroblastoma develop?
Every cell has genes that guide growth and repair. In neuroblastoma, key genes are changed or broken. These changes are called mutations or rearrangements. They push the cell to divide when it should not. They may also prevent the cell from dying when it should. Some tumors have extra copies of a growth-power gene called MYCN. This is called MYCN amplification. Tumors with this change often behave more aggressively. Other tumors have changes in genes like ALK, PHOX2B, ATRX, or TERT. These changes can also drive growth and spread. Many of these changes happen only in the tumor and are not inherited. A small number of children inherit a risk gene from a parent. Even when there is no clear inherited risk, doctors think neuroblastoma begins as a “developmental mistake” during the baby’s growth in the womb. A few young nerve cells fail to mature and later become cancer cells.
Types of neuroblastoma
Doctors use several simple ways to describe types. Using more than one way helps match the tumor to the right plan.
1) By where the tumor starts (site-based types):
Adrenal neuroblastoma: Starts in an adrenal gland above a kidney. This is the most common site.
Thoracic neuroblastoma: Starts in the chest along the spine. It may cause cough, chest pain, or breathing problems.
Abdominal non-adrenal neuroblastoma: Starts in nerve tissue along the belly spine. It may cause a belly lump.
Pelvic neuroblastoma: Starts in the pelvis. It can press on bladder or bowel.
Cervical (neck) neuroblastoma: Starts in the neck. It may cause droopy eyelid or small pupil (Horner syndrome).
2) By how far the tumor has spread (stage-based types, explained simply):
Localized without risky features (often called L1): Tumor is in one area and does not touch vital structures.
Localized with risky features (often called L2): Tumor is near or around important blood vessels or nerves, so surgery is harder.
Metastatic (often called M): Tumor has spread to distant sites like bone, bone marrow, liver, or skin.
Special infant stage (often called MS, formerly 4S): In babies under about 12–18 months, tumor is in one area and has a limited, baby-specific spread pattern (like liver, skin, or bone marrow with low volume) and sometimes can shrink on its own.
3) By risk group (this guides treatment):
Low-risk: Tumor is in one place, easy to remove, and has “favorable” tumor features. Cure rates are very high with surgery alone or with careful watching in select infants.
Intermediate-risk: Tumor may be larger, near vital structures, or have some less favorable features. Cure rates are still high with moderate treatment.
High-risk: Tumor has spread or has strongly unfavorable features (like MYCN amplification). This group needs intensive, multi-step therapy.
4) By how the tumor looks under the microscope (histology):
Favorable histology: Cells show signs of maturing and have certain growth patterns linked with better outcomes.
Unfavorable histology: Cells look very immature and divide quickly; this links with more aggressive behavior.
5) By related tumors along the same family line (nerve-cell tumors):
Neuroblastoma: Malignant tumor of very immature nerve cells.
Ganglioneuroblastoma: Mixed tumor with both immature and more mature nerve cells; behavior can vary.
Ganglioneuroma: Benign tumor of mature nerve cells; does not behave like cancer.
How doctors stage and risk-classify the tumor
Staging shows where the tumor is and how it relates to nearby structures. Risk grouping blends stage, age, tumor look, and gene findings.
Stage L1: Tumor is local and away from vital vessels and nerves. Surgery is usually safe.
Stage L2: Tumor is local but touches or wraps around vital structures. Surgery needs careful planning and often chemo first.
Stage M: Tumor has spread to distant sites. This is usually high-risk.
Stage MS: In very young infants, tumor is local with a special pattern of limited spread. Some of these shrink without heavy treatment.
Risk groups:
Low-risk: Often stage L1, younger age, favorable histology, and no high-risk genes. Many cured with surgery or observation.
Intermediate-risk: Larger or more complex local disease, sometimes with spread that still behaves less aggressively. Often cured with moderate chemo and surgery.
High-risk: Metastatic disease, MYCN amplification, or other unfavorable features. Needs intensive therapy with many steps.
Causes
Most children do not have a clear cause. These are known contributors, risk factors, or tumor changes seen in many cases. I list them clearly and explain them in plain language.
Developmental arrest of neuroblasts: Baby nerve cells fail to mature during fetal life and remain “stuck,” then start dividing later.
MYCN amplification (extra copies): The tumor has many copies of the MYCN growth gene, which pushes fast tumor growth.
ALK gene mutation: A change in the ALK gene acts like a stuck “on” switch for cell growth. Some families carry an ALK change and pass it on.
PHOX2B gene mutation: This gene guides nerve development. Changes can raise risk and are also linked with certain nerve development disorders.
TERT activation (telomerase changes): Tumor cells turn on telomerase, which protects chromosome ends and lets cells divide longer than they should.
ATRX mutation: This change affects how DNA is packed in older children’s tumors and can drive tumor behavior.
Chromosome 1p deletion: Losing part of chromosome 1p removes helpful “brakes” on growth.
Chromosome 11q deletion: Losing this region also removes growth-control genes and is linked to worse behavior.
Chromosome 17q gain: Gaining extra 17q material adds growth signals.
DNA ploidy changes (abnormal DNA content): The amount of DNA per cell is off. Certain patterns in infants can be linked to better outcomes, while others are not.
Inherited family history (rare): A small number of children have a parent or sibling with neuroblastoma due to a passed-down gene change.
Neurocristopathy associations: Disorders of neural crest development, such as Hirschsprung disease or congenital central hypoventilation syndrome, can co-occur and signal shared pathways.
Li-Fraumeni syndrome (TP53) and other cancer predisposition syndromes (rare): Some children with broad cancer-risk syndromes may develop neuroblastoma.
RAS-pathway syndromes (rare): Conditions like Costello or Noonan syndrome involve growth-signal pathways and have occasional links.
Epigenetic changes: Chemical tags on DNA that control gene activity are abnormal and can push growth even without a DNA mutation.
Tumor microenvironment signals: Supporting cells and local signals around the tumor can help it grow and spread.
Errors in apoptosis (cell self-destruct): The cell’s “suicide program” is blocked, so unhealthy cells do not die.
Angiogenesis signals: The tumor makes chemicals that grow new blood vessels, feeding itself.
Prenatal origins: Many tumors likely begin before birth. The first steps happen in the womb, although the full tumor shows later.
Unknown and multifactorial factors: In most children, no single cause is found. A mix of random cell errors and small risks likely comes together.
Symptoms
Symptoms depend on tumor size and location and on whether it has spread. They also depend on hormones made by the tumor.
Belly lump or swelling: A parent may feel or see a firm mass in the child’s belly. Clothes may feel tight.
Belly pain or fullness: The child may point to tummy pain or feel “full” quickly because the mass takes space.
Poor appetite and weight loss: The child may eat less and lose weight because of pain, pressure, or illness.
Fatigue and low energy: The child seems tired and less active. Cancer uses energy and causes inflammation.
Fever without a clear infection: Inflammation from the tumor can cause fevers.
Irritability or fussiness: Pain or discomfort can make babies fussy.
Constipation or trouble passing urine: A pelvic or belly mass can press on bowel or bladder.
High blood pressure or fast heartbeat: Tumor chemicals can raise blood pressure and pulse.
Flushing, sweating, or watery diarrhea: Some tumors make hormone-like chemicals, including VIP or catecholamines, which cause these symptoms.
Bone pain or limping: If the tumor spreads to bones, the child may limp, avoid walking, or wake at night with pain.
Bruising or “raccoon eyes”: Tumor spread around the eyes can cause dark circles, swelling, or bruising.
Pale skin and easy bruising from low blood counts: If tumor cells crowd bone marrow, the child may look pale, bruise easily, or get infections.
Bulging eyes or vision changes: Spread to the eye area can push the eyes forward or affect sight.
Horner syndrome (on one side of the face): A droopy eyelid, small pupil, and decreased sweating on one side can happen if neck nerves are affected.
Opsoclonus-myoclonus-ataxia (rare): Fast, darting eye movements, body jerks, and clumsy walking can occur due to an immune reaction to the tumor.
How doctors diagnose neuroblastoma
Doctors do not rely on just one test. They combine history, physical exam, lab tests, imaging, and tissue tests. Here are 20 useful tests grouped for clarity. Your child will not need every single test. The team picks the right mix for each child.
A) Physical examination
General inspection and vital signs: The doctor looks at the child’s overall condition. They check weight, temperature, heart rate, and blood pressure. High blood pressure can be a clue because tumor chemicals can raise it.
Abdominal exam (look, listen, feel): The doctor gently presses the belly to feel for a mass, firmness, or tenderness. They note size, location, and whether the mass seems fixed or movable.
Lymph node and skin exam: The doctor checks for enlarged lymph nodes. They look for blue or purple skin lumps in infants, which can signal skin spread.
Eye and neurologic exam: The doctor looks for bruising around the eyes, bulging eyes, unequal pupils, or a droopy eyelid. They check reflexes, strength, balance, and walking to look for nerve pressure or OMS.
B) Manual bedside tests
Manual muscle testing: The clinician asks the child to push and pull with arms and legs. Weakness may point to nerve compression or spinal cord pressure.
Deep tendon reflex testing: A small reflex hammer taps the knee and ankle. Changes in reflexes can signal nerve or spinal cord involvement.
Spine and limb palpation/percussion: The doctor presses or gently taps along the spine and long bones. Tenderness suggests bone involvement and guides imaging.
C) Laboratory and pathological tests
Urine catecholamine metabolites (VMA and HVA): Many tumors make catecholamines (stress chemicals). Their breakdown products, VMA and HVA, spill into urine. High levels strongly support the diagnosis.
Complete blood count (CBC) with differential: This checks red cells, white cells, and platelets. Low counts can mean bone marrow is crowded by tumor cells or that the body is under stress.
Blood chemistry (kidney, liver, electrolytes, LDH, ferritin): These tests check organ function. LDH and ferritin can be high with large, active tumors.
Bone marrow aspiration and biopsy: A small sample is taken from the hip bones. Doctors look for tumor cells in the marrow to check for spread.
Tumor tissue biopsy (core needle or surgical): This is the key test to confirm cancer. A pathologist examines the cells under a microscope. They also do special stains such as synaptophysin, chromogranin, PHOX2B, and NSE to confirm nerve origin.
Molecular and cytogenetic testing on tumor tissue: Tests look for MYCN amplification, ALK mutations, 1p loss, 11q loss, 17q gain, ATRX changes, and TERT activation. These results help assign risk and guide targeted treatments.
D) Electrodiagnostic tests
Electrocardiogram (ECG): This checks heart rhythm. It is useful if blood pressure or heart rate is high from tumor chemicals or if certain medicines are planned.
Electroencephalogram (EEG) when OMS or seizures are suspected: This records brain waves. It helps assess unusual eye movements, jerks, or spells in the rare immune-related syndrome linked to neuroblastoma.
E) Imaging tests
Ultrasound of the abdomen or neck: This uses sound waves. It is quick, does not use radiation, and helps find a mass and guide a biopsy needle.
CT scan with contrast (chest/abdomen/pelvis): CT shows size, shape, calcium spots in the tumor, and relation to organs and blood vessels. It helps plan surgery.
MRI with contrast (spine, abdomen, chest, neck): MRI shows the tumor and nerves in fine detail. It is the best test if the tumor may press on the spinal cord.
MIBG scan (I-123 MIBG scintigraphy): Most neuroblastomas soak up a tracer called MIBG. This scan lights up tumor spots across the body. It is a hallmark test to stage disease and to follow response.
FDG-PET/CT (when MIBG is negative or unclear): Some tumors do not take up MIBG well. PET looks for active tumor by tracking sugar use. It can help in those cases or for problem-solving.
Non-pharmacological treatments
Each item lists What it is → Purpose → How it helps in simple terms.
Surgical removal of the main tumor (when safe): To control or cure localized disease and reduce tumor bulk before/after chemo; removing most or all of the mass lowers tumor load and can improve outcomes.
Precision radiotherapy to the tumor bed: To kill remaining cancer cells after surgery/chemo; radiation damages tumor DNA so it cannot grow.
MIBG-protected room care education (for I-131 MIBG therapy): To keep the child and family safe during/after treatment; simple rules reduce radiation exposure to others. PMC
Central venous catheter (port) care training: To make chemo, transfusions, and labs safer; good line care lowers infection risk.
Nutrition therapy with a pediatric oncology dietitian: To maintain weight, strength, and healing; tailored calories, protein, and micronutrients support growth and treatment tolerance.
Physical therapy: To keep muscles and joints strong; guided exercise restores mobility after surgery or when bones hurt.
Occupational therapy: To help with dressing, fine motor skills, school tasks; adaptive strategies keep daily life on track.
Pain psychology (CBT, coping skills): To reduce pain perception and anxiety; skills like relaxation and distraction change how the brain processes pain.
Child life/play therapy and art/music therapy: To lower stress during hospital stays; play and creative work improve mood and cooperation with care.
School liaison and learning support: To maintain education during treatment; plans (IEP/504) prevent learning gaps.
Fever and infection action plans (non-drug steps): To catch infection early; thermometer checks and hygiene routines reduce risk.
Oral care protocol (soft brush, fluoride, rinses): To prevent mouth sores and infections; gentle routine protects mucosa during chemo.
Skin care during radiation or isotretinoin: To prevent rashes and dryness; moisturizers and sunscreen protect healing skin.
Safe movement/orthopedic protection: To prevent fractures when bones are weak; braces, activity limits, and careful lifting protect bones.
Bowel and bladder routines: To ease constipation from pain meds or tumor pressure; fluids, fiber, and timed toileting help.
Sleep hygiene: To restore energy and mood; regular routines support healing and immunity.
Family counseling and social work support: To manage finances, transport, and caregiver stress; support keeps treatment on schedule.
Peer/support groups: To reduce isolation; meeting other families provides practical tips and hope.
Palliative and supportive care from day one: To relieve symptoms and improve quality of life; this team works alongside curative treatment.
Survivorship/late-effects clinic planning: To monitor heart, hearing, kidneys, growth, learning, and hormones after therapy; regular checkups catch problems early. Siteman Cancer Center
Drug treatments
⚠️ Very important: Actual pediatric doses are protocol-specific (often by body surface area, mg/m²). The examples below are orientation only. Always follow your oncology team’s exact plan.
Dinutuximab (anti-GD2 monoclonal antibody)
Class: Immunotherapy (mAb).
Typical dose/timing: ~17.5 mg/m²/day IV over 4 days per cycle, in maintenance after stem-cell transplant; often given with GM-CSF (and historically IL-2) plus isotretinoin in high-risk disease.
Purpose: Attack residual neuroblastoma cells after intensive therapy.
Mechanism: Antibody binds GD2 on tumor cells, flags them for immune killing (ADCC/complement).
Key side effects: Severe pain, fever, low blood pressure, capillary leak, neuropathy, allergic reactions. American Cancer SocietyPMCIsotretinoin (13-cis-retinoic acid)
Class: Retinoid (differentiation therapy).
Typical dose/timing: Commonly ~160 mg/m²/day PO in 2 doses for 14 days, then off for 14 days; repeated for several cycles after transplant/immunotherapy.
Purpose: Push remaining tumor cells to mature and stop dividing; lowers relapse risk.
Mechanism: Retinoid signals promote differentiation of neuroblasts.
Key side effects: Dry skin/lips, elevated lipids, liver enzyme changes, headache; strict pregnancy prevention in teens. American Cancer Society+1Cyclophosphamide
Class: Alkylating agent (chemotherapy).
Typical dose/timing: Varies widely; examples ~250–1,500 mg/m² IV per cycle in induction; hydration + mesna for bladder protection at higher doses.
Purpose: Core component of induction chemo to shrink tumor and control spread.
Mechanism: Cross-links DNA, stopping cell division.
Key side effects: Low blood counts, nausea, hemorrhagic cystitis (prevented with mesna), hair loss.Doxorubicin
Class: Anthracycline (chemotherapy).
Typical dose/timing: Often ~25–75 mg/m² IV per cycle (protocol-dependent) with lifetime dose limits.
Purpose: Induction/combination therapy for high-risk disease.
Mechanism: Intercalates DNA; generates free radicals; topoisomerase-II inhibition.
Key side effects: Cardiotoxicity (needs echocardiograms), mucositis, myelosuppression, hair loss.Vincristine
Class: Vinca alkaloid.
Typical dose/timing: ~1.5 mg/m² IV (max dose capped) per cycle.
Purpose: Part of multi-drug regimens to attack cells via different mechanisms.
Mechanism: Blocks microtubules, halting cell division.
Key side effects: Peripheral neuropathy, constipation, jaw pain; vesicant if extravasated.Cisplatin
Class: Platinum agent.
Typical dose/timing: Often ~80–100 mg/m² IV per cycle with vigorous hydration and kidney/ear protection.
Purpose: Induction/combination chemo for high-risk disease.
Mechanism: DNA cross-linker causing apoptosis.
Key side effects: Hearing loss (ototoxicity), kidney injury, nausea/vomiting, neuropathy.Etoposide
Class: Topoisomerase-II inhibitor.
Typical dose/timing: ~100–200 mg/m² IV daily for 3–5 days per cycle (varies).
Purpose: Part of induction and relapse regimens.
Mechanism: Prevents DNA repair during replication, causing strand breaks.
Key side effects: Myelosuppression, mucositis; rare secondary leukemia risk.Topotecan
Class: Topoisomerase-I inhibitor.
Typical dose/timing: ~0.75–1.5 mg/m² IV daily for 5 days per cycle; often combined with cyclophosphamide in induction or with other drugs in relapse.
Purpose: Shrink tumors and treat resistant disease.
Mechanism: Blocks topoisomerase-I, causing DNA damage during replication.
Key side effects: Low counts, nausea, diarrhea, mucositis.Irinotecan + Temozolomide (relapse setting)
Class: Topoisomerase-I inhibitor + alkylating agent.
Typical dose/timing: Irinotecan ~50 mg/m² IV days 1–5; Temozolomide ~100–150 mg/m² PO days 1–5; 21–28-day cycles (regimens vary).
Purpose: Important combo for relapsed/refractory neuroblastoma.
Mechanism: Dual DNA damage pathways increase tumor kill.
Key side effects: Diarrhea (irinotecan), low counts, nausea, fatigue.High-dose melphalan (conditioning) with autologous stem-cell rescue
Class: Alkylator (intensified).
Typical dose/timing: High dose immediately before stem-cell transplant.
Purpose: Consolidation after induction to eradicate residual disease, followed by infusion of the child’s own stored stem cells to re-start blood production.
Mechanism: Very high DNA damage kills remaining tumor; stem cells rescue the marrow.
Key side effects: Profound low counts, mucositis, infection risk, organ toxicities. Siteman Cancer Center
Where these fit in the big picture: For high-risk disease, standard care usually proceeds in phases—induction chemotherapy → surgery → high-dose chemo with autologous stem-cell rescue → radiation to the tumor bed → dinutuximab-based immunotherapy plus isotretinoin maintenance. American Cancer Society
Dietary “molecular” supplements
⚠️ Strong safety reminder: Supplements may interfere with chemo/radiation or raise infection risk. Always ask your oncology team first; avoid high-dose antioxidants during active chemotherapy unless your team specifically recommends them.
Vitamin D3 — Dose: often 400–1,000 IU/day (age-dependent). Function: bone/immune support. Mechanism: nuclear receptor signaling aids bone health; corrects deficiency.
Calcium — Dose: individualized to diet/age. Function: supports bone during steroids/immbolity. Mechanism: mineral for bone remodeling.
Omega-3s (EPA/DHA) — Dose: commonly 250–500 mg/day in school-age children; older teens may use more under guidance. Function: may help weight/appetite and inflammation. Mechanism: membrane and eicosanoid effects.
Glutamine (oral powder) — Dose: ~0.3–0.5 g/kg/day split doses. Function: may reduce mucositis/diarrhea in some settings. Mechanism: fuel for gut lining cells.
Probiotics (specific strains only, when counts are adequate) — Dose: CFU varies by product; avoid during severe neutropenia or with central lines due to rare bloodstream infection risk. Function: gut regularity. Mechanism: microbiome support.
Zinc — Dose: low-dose only if deficient. Function: taste, appetite, wound healing. Mechanism: cofactor for many enzymes.
Selenium — Dose: low-dose only; avoid high doses. Function: antioxidant enzyme cofactor; deficiency correction. Mechanism: supports glutathione peroxidase activity.
Melatonin (for sleep) — Dose: often 1–3 mg at bedtime in children; teens sometimes 3–5 mg. Function: sleep quality; may improve fatigue. Mechanism: circadian signaling.
Ginger extract (for nausea) — Dose: product-dependent; small divided doses. Function: reduces nausea; complements antiemetics. Mechanism: 6-gingerol effects on gut/brain pathways.
Curcumin (turmeric) — Dose: small doses only; often held during chemo due to antioxidant/interaction concerns. Function: anti-inflammatory research interest. Mechanism: NF-κB and cytokine modulation.
Regenerative / stem-cell-related
(Used to support blood counts, mobilize or protect tissues—these do not cure neuroblastoma.)
Filgrastim (G-CSF) — Dose: ~5 µg/kg/day SC/IV after chemo until neutrophil recovery. Function: speeds white-cell recovery. Mechanism: stimulates neutrophil production in marrow.
Pegfilgrastim (long-acting G-CSF) — Dose: pediatrics often ~100 µg/kg once per cycle (max 6 mg), ≥24 hours after chemo. Function: convenient neutrophil support. Mechanism: prolonged G-CSF effect.
Sargramostim (GM-CSF) — Dose: ~250 µg/m²/day SC/IV in some protocols (e.g., with dinutuximab historically). Function: boosts broader myeloid recovery and immune effect. Mechanism: stimulates granulocytes/monocytes.
Plerixafor — Dose: ~0.24 mg/kg SC for stem-cell mobilization (with G-CSF) before collection. Function: helps release stem cells into blood. Mechanism: CXCR4 antagonist.
Eltrombopag — Dose: weight/age-based; used off-label for prolonged low platelets. Function: raises platelet counts after therapy. Mechanism: thrombopoietin receptor agonist.
Palifermin — Dose: 60 µg/kg/day IV × 3 days before and 3 days after high-dose chemo in some centers. Function: reduces severe mouth sores. Mechanism: keratinocyte growth factor that helps mucosal regeneration.
Surgeries/procedures
Image-guided core needle biopsy
Procedure: Radiologist uses ultrasound or CT to guide a needle into the tumor to get tissue.
Why: To confirm the diagnosis and run biology tests with minimal invasiveness.Primary tumor resection (open or minimally invasive)
Procedure: Pediatric surgeon removes the tumor; may need careful dissection off vessels and organs.
Why: To control or cure localized disease and reduce tumor bulk before/after other therapies.Debulking/interval surgery after induction chemo
Procedure: After chemo shrinks the mass, surgeon removes as much tumor as safely possible.
Why: Lower tumor burden improves response to the next treatment steps.Spinal cord decompression (urgent when needed)
Procedure: Laminectomy or other approach to relieve pressure on the spinal cord.
Why: Rapidly prevents permanent nerve damage and preserves walking/bladder function.Central venous port placement
Procedure: Small device under the skin with a catheter into a large vein.
Why: Makes chemo, blood draws, and transfusions safer and less painful over months of care.
Prevention tips
There is no proven way to prevent a child from developing neuroblastoma. What families can do is prevent complications and improve tolerance of therapy.
Hand hygiene and careful line care to prevent infections.
Vaccinate household members (flu, COVID-19 as advised) to reduce exposure to the child.
Sun protection and gentle skin care during isotretinoin or radiation.
Dental care to reduce mouth infections before/during chemo.
Food safety (well-cooked meats/eggs, pasteurized dairy; careful produce washing).
Smoke-free home and car to support lungs and healing.
Keep all follow-up visits and imaging so problems are caught early.
Balanced, protein-rich meals and hydration to maintain strength.
Safe physical activity to protect bones and prevent deconditioning.
Use only team-approved supplements and over-the-counter medicines.
When to see a doctor urgently
Fever (often ≥38.0 °C/100.4 °F), chills, or looking very unwell—especially during chemo.
Severe pain, new limping, or night-time bone pain that wakes the child.
Breathing trouble, chest pain, or swelling of the face/neck.
Weak or numb legs, trouble walking, or bladder/bowel changes (possible spinal cord compression).
Very high blood pressure, severe headache, or unusual sweating/flushing.
Persistent vomiting or diarrhea, signs of dehydration, or inability to keep fluids down.
New or rapidly growing lump anywhere.
Any symptom that worries you or is getting worse.
What to eat and what to avoid
Eat: Small, frequent, calorie- and protein-dense meals (eggs, yogurt, lentils, nut butters). Avoid: Skipping meals; long gaps that worsen weight loss.
Eat: Well-cooked meats, eggs, and fish. Avoid: Raw or undercooked animal products during treatment.
Eat: Pasteurized milk/cheese. Avoid: Unpasteurized dairy.
Eat: Thoroughly washed fruits/vegetables; peel when possible. Avoid: Salad bars and buffets with unknown handling.
Drink: Plenty of safe fluids (water, oral rehydration, broths). Avoid: Energy drinks and very sugary sodas that worsen GI upset.
Eat: Soft, cool foods for mouth sores (smoothies, puddings). Avoid: Sharp, spicy, or acidic foods that sting.
Eat: Whole-grain breads/rice as tolerated. Avoid: Very high-fiber foods during diarrhea flares.
Eat: Foods rich in healthy fats (avocado, olive oil). Avoid: Greasy fried foods if they trigger nausea.
Coordinate: Citrus and grapefruit can change levels of some chemo/targeted drugs—ask the team first. Avoid: Grapefruit products unless the team approves.
Use only team-approved supplements. Avoid: High-dose antioxidants or herbal blends during active chemo unless your oncologist says they are safe.
Frequently asked questions
Is neuroblastoma common?
It is the most common extracranial solid tumor in children, mostly under age 5, but overall it is still rare. Cancer.govWhat staging system is used now?
Most centers use INRG staging (L1, L2, M, MS), decided before treatment from imaging and IDRFs. American Cancer SocietyWhat does “high-risk” mean?
It means features that predict tougher disease (for example, spread, older age, MYCN amplification). It guides the need for intensive, multi-step therapy. Cancer.govWhat are the main treatment phases for high-risk disease?
Induction chemo → surgery → high-dose chemo with autologous stem-cell rescue → radiation → dinutuximab immunotherapy + isotretinoin maintenance. American Cancer SocietyWhat is anti-GD2 therapy and why does it hurt?
Dinutuximab is an antibody that targets GD2 on tumor cells; pain fibers also have GD2, so neuropathic pain is common during infusion and is managed with strong pain control. American Cancer SocietyWhat is isotretinoin maintenance?
A retinoid taken in “on-off” cycles after transplant/immunotherapy to help remaining cells mature and reduce relapse risk. American Cancer SocietyWhat is MIBG therapy?
Some centers use I-131 MIBG, a targeted radiotherapy that carries radiation directly into neuroblastoma cells; mainly used for relapsed or refractory disease. PMCAre ALK inhibitors used?
Children with ALK-mutated tumors may be offered ALK inhibitors on trials or as off-label therapy at expert centers. Ask your team about current studies. Cancer.govWill my child need radiation?
Often yes—after surgery/chemo to the primary site, especially in high-risk disease. It helps kill residual cells.Why do we need a port?
A port makes months of IV chemo and blood draws safer and easier with fewer needle sticks.How are side effects managed?
Supportive medicines (anti-nausea, growth factors), transfusions, nutrition, mouth care, and infection prevention plans are standard parts of care.What is the outlook?
Outcomes for non-high-risk disease are usually excellent. Survival for high-risk disease has improved with modern multimodal therapy, but it is still challenging, so clinical-trial participation is often encouraged. Siteman Cancer CenterCan siblings get it too?
Familial cases are rare. Genetic counseling/testing may be offered if the team suspects a hereditary pattern.Can my child attend school?
Often yes, with infection precautions and a flexible plan. Hospital or homebound teaching can fill gaps.What happens after treatment ends?
A survivorship plan watches for learning issues, hearing loss, heart/kidney effects, growth and hormone problems, and second cancers—so your child gets help early. Siteman Cancer Center
Disclaimer: Each person’s journey is unique, treatment plan, life style, food habit, hormonal condition, immune system, chronic disease condition, geological location, weather and previous medical history is also unique. So always seek the best advice from a qualified medical professional or health care provider before trying any treatments to ensure to find out the best plan for you. This guide is for general information and educational purposes only. Regular check-ups and awareness can help to manage and prevent complications associated with these diseases conditions. If you or someone are suffering from this disease condition bookmark this website or share with someone who might find it useful! Boost your knowledge and stay ahead in your health journey. We always try to ensure that the content is regularly updated to reflect the latest medical research and treatment options. Thank you for giving your valuable time to read the article.
The article is written by Team RxHarun and reviewed by the Rx Editorial Board Members
Last Updated: August 15, 2025.
