Anyone who knows lifelong Port Jervis resident Katie Onofry Sandberg knows that her upbeat personality does not let much get her down. Despite a life-threatening illness that she was diagnosed with as a teen, the cheerful young wife and mother says she loves life and is always aware that there are others who have it much worse. She is grateful for the support of her family, friends and community as she continues a strenuous course of treatment to fight the disease.
A benefit dinner attended by more than 200 was held recently at the Erie Trackside Manor to assist the Sandberg family with mounting expenses and to show support as Sandberg’s treatment continues.
Sandberg has Cushing’s disease, caused by a tumor on her pituitary gland, which releases too much adrenocorticotropic hormone throughout her body.
“I call this the ‘ugly disease’ because it causes major weight gain in your stomach and face, stretch marks, weak muscles, scarring, pigmentation issues, acne, increased facial hair, and loss of hair on your head,” Sandberg said. “The worst is when I have a hard time holding my baby girl, or not having enough energy to play with her. I do push myself, but majorly pay for it in the end. This can affect you emotionally and cause depression and anxiety, but I get a lot my optimism from my dad and have learned to deal with it.”
Sandberg said a biopsy taken during an eight-hour surgery in 1999 failed to find the tumor and caused her symptoms to spiral out of control. Extensive research and persistence on the part of her mother, Sue Onofry, led her to Massachusetts General Hospital. It was there that the disease was diagnosed in June 2001, the same month that then 18-year old Sandberg graduated from Port Jervis High School.
After successful transsphenoidal surgery a few months later, the tumor was removed and Sandberg was placed on steroids for adrenal balance.
“Seven years later, in 2008, I got off the steroids and was considered cured for the time being,” Sandberg said.
Over the next years, Sandberg earned an associate’s degree in business administration from SUNY Orange and CDA certificate from Keystone College, completed schooling in graphic design from the Art Institute online, worked in early childhood education and in public relations, owned Kate’s Cafe in downtown Port Jervis, married, and became a mom.
“I truly married my best friend. I had known Joe (Sandberg) since high school, but started dating in 2007 and married in 2009. They say you always marry a man like your father. Well, I definitely did in so many ways. He is so hardworking, supportive, and would do anything at all for his family,” Sandberg said. “Then, although I had been told that there was a high chance I would not be able to get pregnant, our miracle occurred. Ella Grace Sandberg was born on July 25, 2011.”
Over the past year, Sandberg’s symptoms returned. Cortisol tests came back in the 600s — a normal range is 18-50. In February, she underwent a second transsphenoidal surgery, which this time was unsuccessful. She was then placed on medicines to help regulate her cortisol levels. She will complete a six-week proton radiation treatment May 23.
“So far, the medicine treatment has been regulating me, which is great, and the radiation has a 95 percent success rate. The only hard part is that it is not immediate. It can take anywhere from one to ten years to work and kill the tumor cells. The key word with Cushing’s is patience,” Sandberg said. “About six months after treatment is finished, I will start testing to see if there is any improvement and to monitor my other hormone functions due to the effect of radiation on my pituitary gland.”
Having the young mom in Boston for so many weeks of treatment has been tough on the family. She said she greatly appreciates daily contact from her friends and family members, and is grateful that her daughter is being cared for by her husband, parents and in-laws.
“I could never have done this or continue to do this without them,” she said. “I am truly blessed.”
For more information on Cushing’s disease, Katie Onofry Sandberg recommends the Cushing’s Research Foundation and she would be glad to answer questions herself at Kosandberg@gmail.com. She hopes that by sharing her story, she might bring awareness and possibly help for someone else.