Honored Kid

Kennedy C.

Age 11
Kennedy C. Kid Photo

Location

Fort Worth, TX, US

Diagnosis

Rhabdomyosarcoma

Date of Diagnosis

August 2024

Status

In treatment

Treated At

Cook Children's Medical Center

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My Story

The day Kennedy turned 2, she was diagnosed with Type 2 Pleuropulmonary Blastoma in her lung, leading to a lobectomy and 11 months of chemotherapy. We also discovered the rare genetic mutation which caused her cancer called Dicer 1 Genetic Syndrome. because of the genetic mutation, we know she is at risk of quite a few other pediatric cancers and have continued to scan and see oncologists every three months. She graduated to the Life After Cancer program and we have been very involved in all of the family opportunities they provide for patients. Last December, 2023, they found 9 thyroid tumors and could not determine if they were cancerous, but knew they would eventually turn that direction. She had her thyroid removed in January of this year and thank God all of the tumors were benign and no additional treatment was required, it was just a very difficult way to start/end the year for her. In July, we went back for routine scans of her abdomen to monitor the Dicer 1 syndrome. She is at high risk for ovarian cancer and the radiologist thought one ovary looked enlarged and recommended further scanning due to her medical history. To our horror, it was actually a uterine tumor, and she was diagnosed with Type 1 Embryonal Rhabdomayasarcoma. Due to the location of the tumor, Kennedy had her uterus, cervix, fallopian tubes and both ovaries removed in August, one week before beginning her 5th grade year. Of course this means she will never be able to become pregnant or bear a child, but the aggressive surgery was needed to ensure her survival. She is in the middle of 6 months of chemotherapy and is expected to conclude mid-January. She has lost her hair, missed most of school, experienced awful side effects and is devastated by not being able to be a "normal" now 11-year-old girl. To see her go through this with the emotions of a pre-teen this time as opposed to being 2 and not knowing any different has been heartbreaking. Right now, her scans are clear and she is on track to be finished with this awful nightmare in January.

The Childhood Cancer Ripple Effect

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