My Sarcoma Story – Catherine

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catherine

Note: Catherine’s story was shared by her mother, Jennifer.

Catherine’s Story: Catherine was a perfectly healthy teenager. She was 16, a junior in high school and had just finished her field hockey season. Catherine was looking forward to a trip to Italy with her high school singing group. Catherine developed pain in her shoulder. When it persisted she asked her parents to take her to the doctor so that if she needed physical therapy she could get scheduled it in between her field hockey and winter conditioning season for varsity crew. After having an x-ray at the orthopedic, Catherine was initially diagnosed with acute bursitis in her shoulder. For three weeks she aggressively iced her shoulder, took Advil around the clock and went to physical therapy. When she went to her follow up appointment with the orthopedic she told them that the pain had grown worse. An MRI was scheduled. A “mass” was found. Immediately after Thanksgiving, she was sent to an orthopedic oncologist. A biopsy was performed. It was cancer – Epithelioid sarcoma. Pure and utter devastation ensued. Our world had collapsed. Catherine told us that, “God had a plan for her.” A few days later CT scans and a five hour MRI were performed. The cancer had spread to her spine and lungs. Stage IV. Catherine had hardly been sick a day in her life, an otherwise ridiculously healthy teenager. Port placement and chemo was scheduled for the day after Christmas. Nothing worked. No successful protocols. The cancer continued to spread. Catherine remained faithful and resolute. She was going to beat this. Catherine’s breathing became difficult. Tubes were inserted to drain the fluid. Catherine moved from the oncology floor to the ICU. She had a tracheostomy. She tried a few immunotherapies and one clinical trial. Seven and a half months later, Catherine died in her mother’s arms, in the ICU, on August 2, 2015.

Words of Wisdom: My advice would be to comfort your child as much as possible. Stay focused on a cure. Stay focused on treatment. Stay positive. Your child watches every twitch on your face. She hears every catch in your voice. Try to stay positive. Seek out the best doctors possible. Get second opinions. Do a lot of research. Be prepared for each doctor’s meeting with questions. Engage a good friend or family member who can be your scribe. That person should come to all of the meetings with the doctors and take notes for you. Make sure your child is comfortable with the doctors, clinic/hospital setting, etc. Give your child as much information as he/she wants and not a tad more. Make sure the wig is ready for the moment your child’s head is shaved. Try to keep your child’s life as normal as possible. That was very important to Catherine. Take care of yourself as much as you possibly can. Accept help when possible and always feel free to say no.

Role of the Sarcoma Foundation of America: The Sarcoma Foundation of America is a vital cog in the engine of hope for sarcoma patients. Not only do we need to find a cure for this aggressive cancer but also we need to figure out ways to prevent it from even happening. Research is incredibly important. Sarcoma cancer research is so amazingly underfunded. We need to get it on the radar of more laboratories. The SFA needs to continue to lead the charge.


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