My 23-year-old daughter, Nousha, recently got diagnosed with an extremely rare and aggressive type of cancer called desmoplastic small round cell tumor (DSRCT). It is a type of sarcoma. Less than 1 in a million people have had it, and there are only around 200 recorded cases in its history. The complexity of this cancer is resulting in a lot of different treatments to save her life, including multiple surgeries, over 40 chemotherapy rounds, innumerable doctor’s visits, and costly medications. All the medical bills are adding up, especially those not covered by insurance. It’s been very hard to keep up with everything on a daily basis as a family now, let alone having to manage all these finances too.

She was living with chronic pain leading up to diagnosis and had to go to over 20 doctors before one believed her pain needed to be investigated, performed surgery, and found the cancerous tumor. This resulted in Nousha saving her own life through her self-advocacy with the help of this trusted doctor and her physical therapist. A bunch of doctor’s brushed her off before the diagnosis, saying her abnormal health findings were “normal” for someone her age. She wishes to become an advocate in this space, especially for young women, and promote screenings for cancer detection once she hopefully gets through all this, making a real difference after her experience. Now, she is fortunate enough to be receiving specialized, expert care for this rare cancer at UCSD.

It is unimaginable that she was a recent college graduate, just starting her career, living a normal life one minute, and now has to be inpatient in the hospital constantly during treatment, dangerous side effects of treatment, and pain management. She is truly the bravest and strongest young woman I know, still doing her best to stay as positive as possible despite the circumstances.

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