About Ewing's SarcomaDiagnosis - Treatment - Clinical Trials - Support
Ewing's Sarcoma Support
“Educate yourself, be informed, don’t count on others to teach you, seek treatment at a WORLD CLASS sarcoma center, get a second and third opinion from a respected sarcoma expert (there aren’t a lot of them), do what you need to do – not what others think you should do, nothing is more important than family (and their wellness), if you have to move to find a cure – MOVE (God will help you…and so will we), don’t be afraid to talk to talk with families who have lost a child (their wisdom could help tremendously), STAND TALL, you’re the BOSS (at times you’ll have to remind the doctors), pray often and with many people, don’t be afraid of GOOGLE but don’t over google, get credentials on your doctors and treatment centers, talk to survivors and learn about their experiences, there journey isn’t yours (but it could help), become a squeaky wheel when necessary and it will be necessary, take good notes (and get names), trust your gut feeling (it’s there for a reason), eat well, the wellness of ALL family members is just as important as the one who has cancer, the origin of most childhood cancer’s is unknown, discuss alternative approaches with respected doctors in the field (Holistic isn’t a bad word, but it may be with certain physicians), Talk about plan A, B, and C upfront, have a plan before you need the plan, sarcoma is tricky and doesn’t play nice (don’t assume it will), stay ahead of the beast, get a trusted & learned friend or two to help you research, the pressure is great (share the opportunity to problem solve), and always remember…..#JuCan DO THIS!”
Jonathan Cobb, Duodenal Cancer Survivor, Caregiver for my 8 yr old daughter, Julia Cobb (Ewing’s sarcoma), Caregiver for my mother (Glioblastoma)
Ewing's sarcoma support request
ONE ON ONE SUPPORT
One of the most valuable things you can do when your child is diagnosed is to have a good support system. Speaking with people who have walked where you are walking is invaluable. If you have questions and/or would just like to talk with someone who has fought sarcoma, please contact: Jennifer Cobb – 888-995-8226 – Jennifer.Cobb@JuCanFoundation.org
What is Ewing’s Sarcoma
Ewing’s Sarcoma is a very rare form of bone cancer that strikes children and adolescents. Actually, it is a group of four different types of cancer, known collectively as the Ewing’s Family of Tumors (EFT). About 250 cases are diagnosed every year in the U.S.
Ewing’s Sarcoma accounts for about 85% of all cases. It’s usually found in the long bones of the arm or leg, although it sometimes occurs in the pelvis or ribcage, and in Julia Cobb’s rare case, the left scapula.
Causes of Ewing’s Ewing’s sarcomas are caused by chromosome changes that occur after birth. In a process known as translocation, chromosomes 11 and 22 “swap” small pieces of each other, resulting in an abnormal gene that can be detected with DNA testing. It’s not known, however why this translocation takes place. There are no identifiable risk factors that increase a child’s susceptibility to Ewing’s sarcomas, and it’s not passed along from parent to child like some inherited childhood cancers.
Symptoms include – bone pain (Julia’s 1st symptom), a swelling or lump that’s warm to the touch, and fever.
Tests & Procedures An X-ray is generally the first diagnostic test ordered when a child has bone pain or other symptoms. While X-rays can detect the tumor, the pediatric oncologist may order another imaging test such as an MRI or CT scan to get more detailed information about the tumor location and whether or not it has spread. A bone biopsy may also be done to ensure a correct diagnosis, since other cancers may affect bone. (Julia had all of the above tests for confirmation/staging)