Suzie and I met each other since 2012. Both University of Florida graduates, we met in Florida, spent a year living in New Zealand, then moved to Colorado where we got married Summer 2016. We were happy, working in our respective fields and enjoying an active life in Colorado, until our life shifted off course.
In the fall of 2017, Suzie experienced progressive headaches for a couple weeks, then suddenly she experienced a change in vision and began seeing double. Worried, I flew home from a work trip and we went to the Emergency Room to have her evaluated. On Oct. 12, 2017, at only 26, Suzie was diagnosed with metastatic (Stage 4) Adenoid Cystic Carcinoma, a high grade cancer that arose in the back of her nose and moved into the base of her skull and a vertebrae in her cervical spine.
We traveled to many different treatment centers at great personal expense to give her the best possible outcome. When she was first diagnosed, we traveled to Pittsburgh to consult with a nationally recognized surgeon who specializes in skull base tumors. The team at Pittsburgh removed about 25% of the tumor from her skull base through her nose, but she lost a lot of blood during the procedure and it wasn't clear whether her tumor should be fully removed, so the surgery was paused.
Surgery wasn't an option for Suzie, and she was referred to a harvard specialist for proton particle therapy in Boston, Massachusetts. Following her treatmet, which took place over three months, we moved back to Colorado.
When we returned to Colorado, Suzie slipped down a stair and fell on her back, which shattered one of her vertebraes. Scans at the E.R. revealed several more tumors in her cervical spine. She had to start systemic chemotherapy. We traveled to MD Anderson in Houston, Texas to consult with the medical oncologist who has the most expertise in her specific genetic mutations that triggered her cancer. Suzie was started on a challenging chemotherapy regimen and we relocated back to Colorado.
Suzie was on this regimen for several months and faced many trials. She was hospitalized several times with neutropenic fever (sepsis) and at one point had nearly no immune system. We are lucky she made it through her treatment, which successfully kept the cancer at bay through January of this year. Sadly, after that point Suzie's cancer no longer responded to treatment and she passed in May.
I am sharing all of this to offer a snapshot of the burden young adults face with a devestating cancer diagnosis. Many are not as lucky as us with personal resources to fund relocation and treatment. As part of this experience I'd like to contribute as possible to organizations like the Ulman Foundation that provide assistance to young adults impacted by cancer.
The AYA community is historically underserved, and organizations like The Ulman Foundation fill a critical unmet need of relocation assistance, fertility and career counseling, and emotional support for young adults and caregivers affected by cancer.
Each year more than 72,000 young adults are diagnosed with cancer in the United States. Young adults (ages 15-39) face a variety of unique challenges with a cancer diagnosis including social isolation, fertility preservation, insurance concerns, delayed diagnosis, and survivorship.
The Ulman Foundation changes lives by creating a community of support for young adults, and their loved ones, impacted by cancer. With your support, Ulman is able to provide free services and resources for the young adult cancer community through programs that focus on patient support services, housing, survivorship, and scholarship. Learn more about young adult cancer and our impact here.