AML Survivor and His Family Raise Nearly $250K To Help Other Patients

 

Russ Been, 50, of Fenton, Mo., had been married to his wife, Jennifer, for just three short months when he was diagnosed with Hodgkin lymphoma. After their wedding in June 2003, Russ returned from their honeymoon in Jamaica with a lingering cough. Despite antibiotic treatment for a believed fungus in his lungs, Russ’ cough persisted, and he was referred to a pulmonologist for a CAT scan. It was then that he was diagnosed with stage IV Hodgkin lymphoma, a cancer of the lymphatic system. 

Russ during treatment.

Having previously worked for the Leukemia & Lymphoma Society Team In Training program, Russ’ experience had come full circle. He began intensive chemotherapy with his new wife by his side. 

Although he suffered several severe hiccups along the way, including lung toxicity resulting in a coma, Russ was successfully treated and made a full recovery. He thought he was in the clear. 

An Unexpected Diagnosis

Two years later, Jennifer was participating in a Team In Training America’s Most Beautiful Bike Ride around Lake Tahoe. Russ followed in the SAG (support and gear) vehicle, providing water and food for participants, but he was struggling to stay awake. Knowing something was wrong, his doctor performed a bone marrow biopsy. It was discovered that Russ had developed a secondary acute myeloid leukemia, or AML, from his Hodgkin lymphoma therapy, and he was referred to Ravi Vij, MD, an oncologist at Siteman Cancer Center.

“Unfortunately, secondary leukemia can be a side effect we see from some chemotherapy drugs, as they can have some toxicity and can cause DNA damage to the good bone marrow stem cells,” says Keith Stockerl-Goldstein, MD, the oncologist who has since taken over Russ’ care at Siteman. “Those leukemias are difficult to treat, and we don’t feel they can be cured without a donor stem cell transplant.”

In preparation for a transplant, Russ immediately began inpatient chemotherapy. One of eight siblings, they found a perfect match for his transplant with his brother. He received his transplant in September 2005, and it was successful. Russ was considered cured.

“The blessing was being referred to Siteman,” says Russ. “They were the Henry Fords of stem cell transplants. Walking in with a billion questions, they were all answered before even asking. They had whole teams just for navigating insurance and finding a match for my transplant. I couldn’t imagine going anywhere else. Every need was met and covered.”

Russ with his wife, Jennifer.

Throughout his treatment, Jennifer stayed by Russ’ side every day. “She is the most amazing person most people will ever meet in their life,” he says. “She probably has been through more than I have. I had the easy part — I just went through the treatment. She’s the one that took care of everything.” Together, they grew close with other families undergoing treatment, befriending another patient and her husband from out of town and welcoming them to their house once a week for a home-cooked meal.

Since his treatment, Russ experiences some mild side effects of graft-versus-host disease, or GVHD. He underwent triple bypass surgery in 2013 and was hospitalized with COVID-19 in early 2021. Fortunately, Russ is doing well and remains cancer free. He sees Dr. Stockerl-Goldstein every three months and visits Siteman South County weekly for a shot. He’s grateful for the continued care and resources Siteman offers, including oncology psychology which helped him deal with the survivor’s guilt he experienced at his five-year post-transplant mark.

“We typically use the five-year mark from transplant as the time that we say people are cured of their leukemia. Russ, like many patients, thought at five years we would say goodbye and not be part of his care anymore because he was cured of his disease. We of course continue to see him, and that’s one of the things that’s unique about doing bone marrow or stem cell transplants: our patients remain our patients forever going forward,” says Dr. Stockerl-Goldstein. “Most of the time in the clinic visits, we’re talking about life and family because luckily, we don’t have to talk about his leukemia because it is cured.”

Paying It Forward

Despite his medical journey, Russ can’t imagine a better life. He owns his own company — a real estate acquisition company he co-founded in 2004 — and has a beautiful family. His three children, 13-year-old Hannah and 9-year-old twins Abigail and Benjamin, were born using science, thanks to the forethought of the care team who treated him for his initial diagnosis.

Russ with his three children.

“Dr. Jim Glauber visited us years later when we had our children, and I just cried thanking him,” shares Russ. “My kids are the greatest thing that ever happened to me. What a blessing it is to see my girls and my son excel. We get to do all kinds of adventures, and I go to bed each night lying next to my wife who has seen me through the worst times. I wake up each day thankful.”

To pay forward the good fortune they’ve experienced, Russ and his family have dedicated time and resources to support other families through the Patient Care Fund and the Leukemia & Lymphoma Society. They often donate gift baskets, including St. Louis Blues tickets, for raffles at Siteman South County, and fundraise by participating in races. Jennifer has run countless marathons, and Russ joined her in running the 2013 Disney Marathon. Their oldest daughter, Hannah, ran the 5K and was the top fundraiser in the nation, and their youngest daughter is currently raising money to run the upcoming Disney 5K. Together, they have raised nearly $250K. “We have just been continually blessed,” says Russ. “I have three loves of my life: my family, my company and the Leukemia & Lymphoma Society Team In Training program.”

Russ recalls the first time he visited Siteman and saw the mural on the seventh floor with the word “hope.” “It couldn’t have better defined what they provided. There was never a doubt I was going to survive.”

Read other patient stories here.