Larry Hightower is a husband of 48 years to his wife Shirley, daddy to two children Amy and David, and “Pop” to four granddaughters and one grandson. Larry is a son, a brother, an uncle, a cousin, a nephew, and a friend. He is a veteran of United States Navy, having served the on the USS Vesuvius AE-15.
He is also a two-year survivor and fighter of mesothelioma, an extremely uncommon type of cancer that affects the linings of the lungs.
Recently, the Mesothelioma Cancer Alliance (MCA) had a chance to interview Amy (Hightower) Byrd about her father’s struggle with mesothelioma, and the inspiration it has given her to achieve new things her own life.
Mesothelioma as a Family Disease
Amy stressed that her father is first and foremost a family man. “Family has always been important to my daddy,” she said. “Growing up we would have Sunday lunch at my grandparent’s house. He was actively involved in my brother and my childhood activities and supported and participated in the sports we were in.”
Her father’s focus on family has continued and grown as the next generation grew as well. “As Pop to his grandchildren, he attended their sports games cheering them on,” Amy recalled. “He played on an over-40 men’s softball team. Dad and my mom had recently started driving to see the USA. They would look for the best BBQ places to eat on their trips.”
Many of the things Larry loved doing best were things done with family, according to Amy. “My daddy is an avid fisherman, gardener, and chef. Prior to his diagnosis of Mesothelioma in July 2014, he would spend his free time on his boat fishing with friends and family. He has taught all of his grandchildren how to fish. He has had a garden every summer plowing and planting rows of fresh vegetables. He would work this garden all summer, teaching his grandson how to till a garden. Daddy loves to cook, bake and grill and is always watching cooking shows to get different ideas.”
None of that changed once Larry was diagnosed. “While his diagnosis of mesothelioma has made some changes in his life one thing remains the same—FAMILY!!”
Fighting Mesothelioma Like a Sailor
“Mesothelioma,” Amy stated. “I had never really heard of it except the lawyer commercials on TV. I didn’t really know what it was not even sure how to say it. The day dad was diagnosed a friend of mine that works in the oncologist’s office told me not to research anything on the cancer.”
The reasons: The prognosis for mesothelioma is almost never good. If caught at an early stage, or when the individual is relatively young, there is much better chance of overcoming the toll that the disease – and the treatment of it – takes on the patient’s body. However, Larry Hightower was in his 70s when he was diagnosed.
“Dad had his first chemo treatment on his 72nd birthday,” Amy told the MCA. “We met with a surgeon to see if surgery was an option. He basically said at dad’s age it would be quantity or quality of life.”
Nobody wants to make such a decision, for themselves or for a loved one. Given his age and the progression of the disease, however, it seemed like a number of treatments were closed to Amy’s dad that might have been available to someone at a younger age. As a naval veteran, Larry didn’t want to give up, but he was unable to find doctors experienced with mesothelioma cases near his home in Georgia, “His local oncologist told him recently he didn’t expect him to live six months,” Amy explained. “This doctor has only treated my dad and maybe one other patient with mesothelioma.”
Determined to carry on the fight, Larry and his family searched for other options around the country. “We found that we have to go outside of the state to get the best care,” Amy said, explaining that the doctors near their home “aren’t sure how to handle the compassion and care of a mesothelioma survivor – especially one like my dad who want to live and is willing to go outside of comfort zone to do what he has to do to get the care he needs to fight. My mom has been there every step of the way and I have traveled with them when possible.”
The search for quality treatment carried Larry and his family to some of the best mesothelioma cancer centers in the country. “Dad’s journey had taken us to Philadelphia to meet with Dr. [Joseph] Friedberg and his team of specialists [at the University of Pennsylvania]. Dr. Friedberg and his team decided that dad was not qualified for surgery. So he continued 12 rounds of intense chemotherapy.”
Chemotherapy, even in large doses, was not enough to put the cancer in remission, however. “After chemo ended, we met with Dr. [Anne] Tsao at MD Anderson in Houston, Texas. She admitted him on a trial drug. Dad was on this drug for 10 months and saw improvements and tumor shrinkage. He was on the trial the longest of anyone.”
Nonetheless, even with the experimental treatment, Larry’s tumor ended up growing again. “Once the tumor grew outside the allowed range he was dismissed from the trial. My dad being the fighter he is said, ‘What’s next?’”
Now, Amy’s dad is taking part in another trial using immunotherapy, a form of treatment that focuses on kickstarting or boosting the body’s natural immune system response to cancer. Although it’s too early to tell how well the immunotherapy drug is working, there is some evidence that Larry is improving from the treatment. “We do know that he has more energy and feels better than he has in two years,” Amy said.
Find Inspiration in the Struggle
“I have wondered what my purpose in life is,” Amy admitted. “I am not sure how to bring awareness about this disease to others.”
Even so, it seems that Amy has much of the same fight in her that her father has. Just as her dad spent so much of his life doing things with and for family, Amy has turned her own passion of running into an awareness activity. And just like her father, she doesn’t settle for doing things in small doses – she runs marathons!
“I run marathons and my shirt says, ‘If my dad can fight Mesothelioma I can finish this 26.2!’ I am able to share during my races with a few people how people are exposed and are eventually diagnosed. I have told a friend who was remodeling an older house that she was worried had asbestos in it to have it inspected.”
Her awareness about mesothelioma and the dangers of asbestos are much sharper now, having seen what her dad has gone through these last two years and knowing more about the physical effect asbestos has on the body. “We assume dad was exposed to asbestos in the Navy. He worked in the boiler room and the ships were covered in asbestos,” she said. After the Navy, Larry worked for BellSouth. “He could have also been exposed installing phone lines for the phone company, as many of the lines had asbestos in them,” Amy added.
“I am not sure how the ban of asbestos in the USA can happen until it affects a family member of Congress. I feel that so many people could be suffering from this disease but do not realize they are. It was almost 50 years from my dad’s discharge from the Navy till his diagnosis. He thought he just had severe allergies. Bringing awareness to our naval veterans will help save lives.”
More than anything, though, Amy brings it all back around to the one thing that matters most.
“My daddy will always be my hero: He is a fighter and a survivor. Through this journey the past two years, he has still put his family first. He doesn’t want to miss anything.”