Honored Kid

Maggie Brown

Maggie Brown Kid Photo

Location

Summerville, SC, US

Diagnosis

Clear Cell Sarcoma

Date of Diagnosis

February 2019

Status

Deceased

Treated At

MUSC Children's Hospital

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My Story

Maggie was diagnosed in February 2019 with a rare form of cancer called Clear cell sarcoma. Initially, she was diagnosed with Ewings Sarcoma and immediately started Chemo Therapy. After a few rounds of Chemo, the genetic testing came back and changes our diagnosis to Clear Cell Sarcoma. The most successful treatment for Clear Cell Sarcoma is to remove surgically with negative Margins. That was not possible in our case due to the proximity to her pelvis, and spinal cord. So we went down the next best path of Radiation and some targeted therapy medicines. With Clear Cell Sarcoma being so rare, there is not as much investment in treatment alternatives. She spent 2 months in the summer of 2020 in Jacksonville (During Covid) receiving radiation from the UF proton therapy center to try and limit the residual radiation exposure to other organs in her midsection. Over the next few years, she experienced a lot of trials and tribulations, mostly from side effects of the radiation and targeted medicines she was taking. Chemo took her hair, The medicines changed her hair color when it came back and made her nauseous, changed her appetite and taste for food, which was already not good. All along she needed a G-Tube to supplement her body's need for nutrition. She experienced muscle degradation and nerve damage from the radiation which limited her ability to walk without support. Later, she had kidney failure on her right kidney as a result of exposure to radiation. Lastly, there was internal bleeding that would cause her to pass out which took multiple trips to the hospital to diagnose (again a result of radiation). Through all of that, up until the very end, while receiving oxygen at home to support her breathing, she never gave up hope and wanted to experience life with her family and friends. What's most amazing to her mom and me is the stories from her friends which really showed the amazing character and strength she had. We had a long 3 years in Maggie's battle with cancer, but we would never have made it that long (and yes, it was all worth it) without the amazing help and support from each and every one of the doctors, nurses and support staff at every facility we entered. They are truly heroes and need to be commended for their work. Thank you for supporting Maggie and the more than 300,000 kids worldwide who will be diagnosed with cancer this year. By sharing the gifts of your time, talent and money with the St. Baldrick’s Foundation, you're supporting research to give all kids with cancer a better chance for a cure.

The Childhood Cancer Ripple Effect

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