Fighter. The word that best embodies the whirlwind and emotional journey that Katherine Mueller has been on. Those following Mueller — a Severna Park native — are aware that she was diagnosed with a rare form of cancer called neuroendocrine tumors (NETs) in November 2018. At the time, she was 28 years old, and the odds of her survival were low. The typical person would want to curl into a ball and give up. Mueller did the opposite.
In 2019, she and her family organized Fight NET Cancer with Katherine at Severna Park Taphouse, raising an unbelievable amount of $73,000 for the Neuroendocrine Tumor Research Foundation (NETRF). The monetary amount was then matched through the NETRF’s Spark Hope campaign.
NETRF was founded in 2005 in the Boston area by a NET patient with the goal to find the best scientists and to build awareness around the uncommon disease that impacts only 175,000 patients in the U.S. Ninety-two percent of all revenue raised for NETRF funds innovative NET research projects around the globe.
“Katherine truly inspires all of us at the foundation to do as much as we can to raise critical funds for NET research,” said Susan Payson, chief development officer at NETRF. “Partnering with patients like Katherine and coaching her from afar in fundraising has allowed us to follow her cancer journey’s highs and lows, which has motivated us to expand NET awareness and grow our fundraising program. It’s emotional for all of us.”
Mueller learned that her wishes to have a follow-up fundraiser in 2020 wouldn’t be possible, at least not the way she initially envisioned it, because of the COVID-19 pandemic. Instead, and with the help of her husband, Matt Mueller; mother, Robin Sells; and stepfather, Larry Sells, they went “virtual.” In less than two months of fundraising and including the initial success, a total of $201,000 has been raised and contributed to the Katherine Mueller NET Research Fund at NETRF.
Although fundraising was going well, this past February, Mueller had devastating news. She had acute liver failure and a prognosis of only three to four weeks to live.
According to Mueller, “Of course, Matt and I just could not accept that news. We took the weekend to cry and be with family, but as soon as offices opened Monday morning, we were calling around, making appointments and reaching out to anyone we could think of that might be able to help get us in with a liver specialist at one of the top Maryland hospitals for a second opinion quickly.”
Thanks to a favor called in by Dr. Eric Liu, a NET specialist in Colorado, Dr. Jean Emond, a world-renowned liver transplant specialist and the chief of transplantation services at Columbia University/NewYork-Presbyterian, took on her case.
“I literally didn’t think a transplant would ever be a possibility for me because of having stage 4 cancer,” explained Mueller.
After overnighting her health records, Emond confirmed the initial assessment that Mueller would have only weeks of life without a liver transplant. Dropping everything, Mueller and her husband hopped in the car and headed to New York.
Following an in-patient evaluation, she learned that she was an eligible candidate for the national liver transplant recipient list. Soon after that, she received a healthy liver from a man who saved her life.
“I never in a million years expected the turn of events that led to me receiving a liver transplant, effectively resetting my clock,” Mueller said. “Doctor after doctor told me that transplant would never be a possibility for me, simply because of my diagnosis. Dr. Emond and his team at Columbia University took the time to delve into the details of my individual case and decided to take a chance on me … I am living proof that cancer patients should not be discriminated against when it comes to organ transplant eligibility.”
Today, Mueller is about a month post-liver transplant and total pancreatectomy. Technically, the surgeon removed all visible cancer. While Mueller and her family remain hopeful, it is too soon to label her as cancer-free or even NED (no evidence of disease).
“Right now, I am just enjoying my life and feeling extremely grateful for every moment I have and every extra memory I can make with the ones I love,” said Mueller.
Without the research by NETRF-funded projects over the past 15 years, Mueller wouldn’t have had nearly the number of treatment options or specialized imaging techniques readily available upon diagnosis.
“My purpose for fundraising for NETRF has always been with the next generation of NET patients in mind,” explained Mueller. “If I am able to save even one family from going through the heartache mine has been through, then that is a legacy that I can be proud of.”
For anyone who has fought cancer or had a loved one touched by the dreaded disease, Mueller’s unwavering faith is an inspiration. Her story is also a reminder that miracles do happen and that when a supportive community comes together, they can have a hand in miracles too.
“She keeps me moving forward,” said Payson. “I don’t think she realizes the impact she has on people. She’s such an optimist and breath of fresh air with a can-do attitude. She’s going to do great things down the road.”
For anyone who would like to learn more or contribute to the Katherine Mueller NET Research Fund, visit bit.ly/katherine_mueller. You can also get involved by contacting Susan Payson at firstname.lastname@example.org.