Some helpful links, and a little advice
The Nick Teddy Foundation does not offer medical advice at any time.
We strongly urge you to seek treatment at a facility that SPECIALIZES in Ewing’s sarcoma, but cannot recommend one doctor or institution over another. Your best advice for any decision will come from your healthcare team, and your institution’s social services departments.
Local Sarcoma Centers/Programs
University of Iowa Hospitals and Clinics
U of I Stead Family Children's Hospital
Iowa City, IA
225 E. Chicago Avenue, Chicago, IL 60611
Children’s Hospital of Illinois
at OSF St. Francis Medical Center
800 NE Glen Oak Avenue
Peoria, IL 61603
Clinical trials at the Mayo Clinic
Cancer Watch Clinical Trials Search
help with clinical trials, referrals
Amschwand Sarcoma Cancer Foundation
very good comprehensive list of resources
Cure Search coping with cancer page
lots of information on trials and specialist treatment
Financial and Prescription Assistance
National Organization for Rare Disorders
A Little Advice
We do offer these tips on issues that are common sources of confusion, misunderstanding, and heartache:
Seek a second opinion whenever possible
You have the right to request one, and your health care team will know how to help you get one.
Familiarize yourself with the Patient Rights and Responsibilities information
provided to you by your hospital or clinic
Take it seriously. Ask lots of questions. Pain, discomfort, and anxiety should be addressed and adequately managed.
Speak up if something is not right, or you don't understand what is happening
Your health care team is human. Sometimes mistakes happen, things get overlooked, or communication is not clear.
Caregivers want to do their best, and they can't improve if they don't know where deficiencies lie.
If all else fails, tell your team you want to talk to the Patient Advocate
Nowadays, nearly every major hospital has one.
Patient Advocates are professionals with experience in both advanced medical practice and conflict resolution.
Patient Advocates really do listen, and they really do get things done. Let them be your voice.