Sophie Rumatz



Sophie's Story


Birthday: March 14,2005

Location: Texas, USA

Diagnosis Date: July 14, 2005

Type of Sarcoma: Extraskeletal Mesenchymal Chondrosarcoma

Tumor Site: Tumor found in her hip joint between her acetabulum and the part of the femur that articulates with it

Age at time of Diagnosis: 4 months

NED (No Existing Disease) for 2 years 6 months








Hospital:
Dallas Medical City Children's Hospital

Oncologist:
Dr. Stan Goldman, Dr. Joel Weinthal, Dr. Carl Lenarsky

Surgeon:
Al Mollabashy, MD

Diagnosis Experience:
At 3 months of age a lump was found on Sophie's thigh. It was originally thought it might be from her recent 2 month immunizations. As the weeks went by the lump grew, Sophie was sent to be seen by an orthopedic specialist who ordered an MRI right away. After the MRI results a biopsy was scheduled a couple days later. 45 minutes after Sophie was taken in for her biopsy the surgeon came out with the news that it was a sarcoma. Sophie was immediately referred to an oncologist down at Medical City Children's hospital the following morning. She was admitted immediately by the oncologist and that following week while in the hospital had another MRI scan, CT scan, PET scan, abdomen/kidney ultrasound, EKG, surgery for insertion of her port, one blood transfusion and her first round of chemo began after the pathology reports all came back concurring it was an extremely rare sarcoma named Mesenchymal Chondrosarcoma. Sophie is the youngest known person of this type of cancer.
Click on Image to Enlarge
Treatment:
Sophie had 3 rounds of Chemo to try and shrink the tumor to a size where it could be removed through surgery. Since there is no protocol for Mes Chondro due to its rarity Sophie was put on the Ewing Sarcoma protocol of Vincristine Doxorubicin/Adriamycin Cyclophosphamide/Cytoxan given with Mesna After the 3rd round and the tumor still growing another MRI was ordered and determined that the chemo was ineffective and the tumor had to be removed. Removing the tumor required amputation of the limb from the hip socket, or the point where the ball of the femur articulates with the hip. That disarticulation would severely limit the ability of Sophie to accept a functional prosthesis in the future. But another option was offered for Sophie... trying to preserve the essential mechanical working of the ball-and-socket joint that is the hip and retain an upper limb with a knee, that would offer Sophie a prosthetic lower limb that affords great mobility. Dr. Goldman suggested we consider the preservation option.

Recovery:
Sophie recovered beautifully and when she was 15 months old she was molded and fitted for her first prosthetic at Texas Scottish Rite Children's hospital. She went inpatient for a week for physical and occupational therapy and a month later took her very first steps. Sophie goes every 3 month for follow up scans for surveillance and clinic visit with her oncologists, she goes every 3-4 months for follow up with her surgeon and every couple months she is seen at Texas Scottish Rite for her prosthetic. The one issue we are dealing with now is a possible curvature of her spine do to her gait so we will be following up to check for possible scoliosis.

Life Now: Life is GREAT! Sophie is a rambunctions, bright-eyed happy 3 year old who is full of life and spunk! She moves and grooves with her prosthetic and hasn't let it slow her down one bit. She now tells us that she wants to be a doctor.

Thoughts: If there is one thing we can say for any new patients and their families is take one day at a time, don't kill yourself with the 'What If's' and always find the humor and keep the laughter going. Laughter is truly the best medicine. And most importantly speak up and don't be afraid to question anything that is being said or done by the doctors, nurses, insurance companies, hospitals. You have a voice! And last but not least never give up HOPE!





Click Here to Return to Faces of Sarcoma Home Page