Confirm the Diagnosis
Write down the exact diagnosis and subtype. Ask whether pathology was reviewed by a pathologist experienced in pediatric sarcoma.
Family Resources
Trusted support for every stage.
A comprehensive starting place for families navigating diagnosis, treatment, travel, school, survivorship, caregiving, and grief.
Newly Diagnosed
You do not have to understand everything at once.
Your oncology team should remain your primary source of medical guidance. These steps can help you organize information and prepare questions.
Request Your Records
Keep copies of pathology, imaging, treatment plans, medications, discharge instructions, and important phone numbers.
Consider a Second Opinion
Because sarcoma is rare, evaluation at a pediatric sarcoma center may be valuable before major treatment decisions.
Questions to Ask the Care Team
- What is the exact type, subtype, stage, and location?
- Has pathology been reviewed by a sarcoma specialist?
- What is the goal of each part of treatment?
- What short- and long-term side effects should we expect?
- Should fertility preservation be discussed?
- Are clinical trials appropriate now or later?
- Who should we call after hours?
- Would a second opinion change or delay treatment?
Understanding Sarcoma
Many diagnoses. Different treatment needs.
Ewing Sarcoma
Often begins in bone or soft tissue and commonly affects children, adolescents, and young adults.
NCI Information →Osteosarcoma
The most common primary bone cancer in children and adolescents.
NCI Information →Rhabdomyosarcoma
A soft-tissue sarcoma related to skeletal muscle cells that can occur throughout the body.
NCI Information →Other Sarcomas
Includes synovial sarcoma, infantile fibrosarcoma, and many rarer subtypes.
NCI Information →Specialized Care and Clinical Trials
Experience matters when treating rare cancers.
Children's Oncology Group
Locate hospitals participating in pediatric cancer treatment and collaborative research.
Find a COG Center →NCI Cancer Centers
Search National Cancer Institute-designated centers and specialized programs.
Search Centers →ClinicalTrials.gov
Search studies by diagnosis, age, location, and recruitment status.
Search Trials →Financial, Travel, and Lodging Support
Practical help can ease part of the burden.
Ronald McDonald House
Lodging and family support near participating children's hospitals.
Find a House →Alex's Lemonade Stand
Travel assistance and family programs for eligible childhood cancer families.
Family Services →National Children's Cancer Society
Financial, transportation, and emotional support for eligible families.
Explore Support →Miracle Flights
Medical travel assistance for qualifying children and families.
Request Help →Corporate Angel Network
Free travel on available corporate aircraft for eligible cancer patients.
Learn More →Hospital Social Work
Ask about local grants, gas cards, lodging, food support, insurance help, and emergency funds.
School and Education
Helping children stay connected to learning.
School Accommodations
Ask about homebound instruction, IEPs, Section 504 plans, reduced workloads, and testing accommodations.
Returning to School
Plan for attendance, mobility, fatigue, infection precautions, peer questions, and communication with teachers.
College Support
Contact disability services about medical leave, housing, attendance flexibility, and academic accommodations.
Support for the Whole Family
Every person in the family deserves care.
For Warriors
Child-life services, therapeutic activities, peer programs, camps, and age-appropriate education can help.
For Siblings
Siblings may feel fear, sadness, guilt, jealousy, or confusion. Honest communication and individual attention can help.
For Caregivers
Ask about counseling, support groups, respite care, spiritual care, and practical support.
Your hospital's social worker, psychologist, child-life specialist, chaplain, and patient-family support team can help connect you with local services.
Survivorship
Care continues after treatment ends.
Survivorship care may include monitoring for recurrence, treatment-related late effects, rehabilitation, fertility care, mental health, and transition planning.
- Request a written treatment summary.
- Ask for a survivorship care plan.
- Review follow-up imaging and visits.
- Discuss heart, kidney, hearing, bone, hormone, and fertility monitoring.
- Ask about rehabilitation, school, and mental-health support.
COG Long-Term Follow-Up Guidelines
Risk-based follow-up guidance based on a survivor's specific treatment exposures.
Explore GuidelinesGrief and Bereavement
There is no single way or timeline to grieve.
Families may find support through hospital bereavement teams, grief counselors, bereaved-parent groups, faith communities, remembrance programs, and sibling services.
Strides remembers every warrior whose life has been taken by sarcoma. Their stories remain part of our mission.
Support From Strides
Our community is here for you.
Care Packages
Personalized comfort and activity packages.
Stockings for Sarcoma
Holiday support for eligible warriors.
Birthday Cards
Annual encouragement from our community.
Warrior Spotlights
Optional celebration with family permission.
Disclaimer: This page provides general educational information and does not replace medical, legal, financial, or mental-health advice from qualified professionals.