Jessica's Story

 Submitted on Jun 10, 2009

Childs name: Jessica
Parents name: Arlo & Sue
Mailing address: Connecticut
Emails: susane@optonline.net
Website: 
Diagnosis: Ewing's Sarcoma on T7 vertebrae
Diagnosis date: 10/06
Childs age: 11
Treatment summary: 14 rounds of chemo including doxorubicin, cyclophosphamide, etoposide, ifosfamide, vincristine 46.8 Gy proton radiation to T6-T8 vertebrae
Proton center: Massachusetts General Hospital
Oncologist: Dr. Yen-Lin Chen
Number of treatments: 26 radiation treatments, 46.8 Gys
Proton dates: 2/07-3/07
Insurance carriers: United Health Care
Learn about treatment: Research on the web
Story: Jessica was diagnosed with ewing's sarcoma while recoving from an appendectomy. While recovering from her surgery, she started complaining about back pain. The pediatrician thought she had developed pneumonia, and treated her accordingly. After multiple courses of antibiotics and a negative chest xray, she was still complaining of persistant pain. A CT scan was ordered in search of possible pockets of infection left over from her surgery. That afternoon we got the call from the pediatrician that a small mass was found on her T7 vertebrae, and that we should proceed directly to the emergency room at the Children's Hospital. We were met there by a pediatric oncologist, who ultimately navigated us through multiple tests, a needle biopsy, and an open biopsy which landed us in the ICU for recovery. They knew at that point that the tumor was malignant, but it took another 2 days to determine that it was ewing's. We got a second opinion at Memorial Sloan Kettering Hospital in NYC who confirmed the diagnosis. We opted to follow the COG protocol for ewing's, which consisted of 14 rounds of chemo, plus radiation for local control. We then began to research our radiation options. Our goal was to find a treatment that would allow the tumor to be radiated without damage to the spinal cord. The radiation option at our local hospital was standard photon radiation, while MSK recommended the use or IMRT radiation at their facility. After researching on the web, and the recommendion of a friend who had undergone proton radiation for prostate cancer, we decided that proton radiation might be the best option for Jessica. MGH agreed to take Jessica's case, and we spent over 5 weeks in Boston for treatment. Everyone at MGH was professional, friendly, and helpful. Jessica experienced some topical burns which halted treatment for a few days, but otherwise did not experience any discomfort. She remembers her experience there as very positive. We continue to see the radiation oncologist there once a year for follow ups. Jessica has been NED for 21 months. She has recently been diagnosed with scoliosis and will begin wearing a night brace, but otherwise leads an active life.