Tri-State 5K Walk/Run
The Multiple Myeloma Research Foundation is delighted to recognize the Bob Heller Team as the MMRF Spirit of Hope Honoree at the 2016 MMRF Team for Cures: Tri-State 5K Walk/Run.
Bob Heller Team Story
Anne Koproski was searching on the internet about eight years ago when she came across the MMRF Tri-State Race for Research. She found information on the event too late to participate but the seed was planted to get involved with the MMRF. Anne’s older brother, Bob Heller, was diagnosed with multiple myeloma over 11 years ago. He lives in Seattle. Anne and Bob’s other siblings live mainly in the northeast. Their sister Jane lives in New York, their brother Tom in New Jersey, and Anne lives in Connecticut. Truly a “tri-state team” if there ever was one and what better way to support Bobby then to promote this race. It was hard for Anne, Jane and Tom feeling so helpless and so far away when they just wanted to rally around and support him. The Race for Research (now Team for Cures) seemed the way to go. Originally, none of the Heller family were racers, not even runners, but they were gung-ho to walk their way to whatever they could!
The Bob Heller Team chose their team name for purely practical reasons. They picked it as they wanted Bobby’s many friends to recognize the name and hopefully come on board. The Heller Family uses the race as a time to gather as many friends and family together for a mini reunion. They normally follow the race with a BBQ at Anne’s home in Wilton CT. Bobby will give the family a call from Seattle, have a few laughs, and share stories of growing up together. Last year, they reconnected with a cousin the family hadn’t spent any time with in over 20 years! One year the family was very fortunate to have Bobby join them and that turned into a college reunion for him and 17 close friends.
The siblings agree this award is all about Bobby. He is the one they admire for his perseverance, sense of humor, caring of other people, and fearlessness in the face of the many trials he has faced. He inspires their whole family.
Bob is a full time practicing attorney with an active social and professional life. He was a regular at his gym and enjoyed working out alone or with friends. In 2004, he found himself becoming more and more fatigued, even without any exercise. He was ultimately diagnosed with multiple myeloma. The diagnosis came with a statistical five year life expectancy. The family was familiar with the disease since their aunt had been diagnosed with it two years before Bob’s diagnosis. At diagnosis, she was 80 whereas Bob was 52. Due to her age and disease progression, she was not a candidate for many of the options coming available to Bob. As a result, she passed way in 2005.
When Bobby told his family about his diagnosis he said his only goal was to stay alive long enough for them to find a cure. Anne, Jane and Tom were desperate to be tested to be a stem cell donor. Each one of them yelled “pick me, pick me!” Their sister, Jane, won.
Bob started with thalidomide and dexamethasone and within a year he had his first bone marrow/stem cell transplant. This was an autologous transplant of his own stem cells followed by a second transplant of his youngest sister, Jane’s stem cells. After these initial treatments, Bob participated in established treatment protocols including lenalidomide, donor lymphocyte infusions, bortezomid plus doxil but always developed some level of disease progression. Later, he participated in a number of studies involving proteasome inhibitors and immunomodulatory agents. Bob would participate in a study for as long as a year to a year and a half until the disease progressed which led to his being dropped from the study. The last study in which he participated was an anti-CD38 monoclonal antibody therapy. This was effective for almost a year but then Bob’s eligibility was withdrawn due to disease progression. He is now starting Daratumumab and is very hopeful for a successful outcome.
“I have lived from study to study for a number of years and this brings home to me, very forcibly, the benefits provided by MMRF and other research support organizations. I owe them my life.”
“I am now in my 12th year since diagnosis. I go to work every day with the incredible support of my co-workers. I socialize, exercise, play music, cheer for the Seahawks and worry about the Mariners just like everyone else in Seattle. All this without the crippling fear of cancer hovering over my head. I live my life more fully than I would have thought possible when I was first diagnosed. I will always be grateful for the unwavering support of my family, particularly my brother and sisters, and all the friends and relations who have always been there for me.”
Bobby has thrown himself wholeheartedly into whatever goals he sets for himself. He is a Wesleyan University alumnus, where he was captain of the football team, first-string center (ahead of his teammate and longtime friend, New England Patriots Head Coach, Bill Belichick), twice honored All American and inducted into the Wesleyan Athletic Hall of Fame in 2010. In the 80s, he saw a need in his law firm for communicating with their deaf and deaf-blind clients and learned sign language, becoming a volunteer guide, interpreter and setup person for over 28 years at the Washington State Deaf-Blind retreat in the process. He loves everything Irish and their enjoyment of spontaneous musical events lead him to learn to play the fiddle, by ear. He can’t read a note of music but now participates in Irish music sessions around Seattle.
Bob successfully juggles all his chemo treatments with a heavy litigation schedule. It’s no surprise he works in an office that is supportive of him, given how supportive he is of others. He will speak with anyone newly diagnosed with cancer. He presents at conferences and speaks about legal issues in health care to cancer support groups.
Bob’s co-worker Marilyn McAdoo says, “Bob’s big heart and love of people have guided him through his life and career. His passion for family, music, the law, and the many, many people in his life is his trademark. If you don’t know Bob, you’re missing out. If you do, count yourself lucky.”
His family knows some days are harder than others. When results from a new study do not go as well as their family hoped, he will call and say, “Well, I just went home and kicked the cat. I will start again tomorrow.” (No worries; he doesn’t own a cat and would never kick one at any rate!).
“I am so amazed at his resilience. The energizer bunny has nothing on him! It is because of continued research and studies that he is still with us and the hope for continued progress and an eventual cure, keeps him (and the rest of us) going,” said his sister, Anne.
Since their involvement in the Tri-State Race, many people have come to tell the Heller family they either knew someone who passed away who had multiple myeloma or that someone in their family currently has multiple myeloma. They find strength and comfort knowing they are not alone. One woman their brother Tom works with found out right before they started fundraising for the 2016 race that her brother was diagnosed with multiple myeloma. This woman didn’t have knowledge of the disease or where to turn. She is thrilled to have an opportunity to support the Bob Heller Team’s efforts and is trying to attend the event. Besides Bob, it’s these other people with their stories and the way they have embraced the team’s efforts that gives them perseverance to continue.
According to Bob, “The only thing the patient can bring to the table is attitude. We can’t do the medicine part. But attitude is everything. Living life every day, enjoying every moment without worrying about myeloma is huge. The support of family and friends is immense in that regard.”
The MMRF works tirelessly to find a cure to extend the lives of patients just like Bob, and is proud to honor the Bob Heller Team as the 2016 recipient of the MMRF Spirit of Hope Award, given at every MMRF 5K Walk/Run event to a person who inspires hope and shows extraordinary commitment to the MMRF. The Bob Heller Team has touched the myeloma community with their strength of character, their kindness, and their embodiment of hope.