Pam remembers the exact moment Benny told her he loved her for the first time. The 1974 hit, “I Honestly Love You” by Olivia Newton John, was playing on the radio as they sat in Benny’s navy blue Camaro.
“He told me, ‘Listen to this song.’ And that’s how he told me he was in love with me,” Pam says. They would be married four years later, in 1978.
They settled in Edison, NJ, and built a life together, going on to be parents to three wonderful children, two sons and a daughter. Pam still lives in that house, now filled with mementos from their life together – a working antique juke box, a free-standing wooden phone booth and a Bobby Orr pinball machine.
Benny was a man of eclectic interests. Pam would come to know him as an antiques enthusiast, including vintage cars. He later gave a makeover – from the inside out – to his vintage 1968 Cadillac convertible (pictured).
Futures Forever Changed
Pam and Benny were life partners, and she thought they would grow old and enjoy grandparenthood together. That all changed during Benny’s regular checkup in the fall of 2006, when his doctor noticed he had an elevated white blood cell count. Benny was referred to a specialist, but with no physical symptoms evident, doctors decided the best course of action was continued careful observation, based on his symptoms at the time.
Benny began to have night sweats. By the fall of 2012, his night sweats had increased in frequency, his weight had started to decline and he had developed enlarged lymph nodes – tell-tale signs of chronic lymphocytic leukemia (CLL). Many people with CLL have no early symptoms, but his doctors now had a definitive diagnosis and decided he needed more aggressive treatment for his CLL.
Benny had a way of making everything OK. I miss his smile.
At that point, Benny began doing chemotherapy once a week. It was around this time that Pam started keeping a binder, where she furiously scribbled notes from each doctor’s visit.
The terms Benny’s doctors used were sometimes complicated, and she recalls how challenging it was to understand what this foreign jargon meant. She relied on explanatory literature from patient groups to help translate the jargon she had scrawled in her binder and to understand Benny’s disease.
“Kindness from our family and friends and their thoughtful caring gestures got me through,” Pam says.
Pam and Benny adjusted to a new normal as the next year rolled around. Then, in the spring of 2014, Benny got a call one day from his doctor telling him that his white blood cell count was no longer rebounding in response to chemo.
He needed to go to the hospital right away. There, the doctors found that Benny’s CLL was now complicated by a new diagnosis of acute myeloid leukemia (AML). AML is a very aggressive blood cancer that can occur in a small percentage of patients after treatment for CLL.
His health deteriorated rapidly, and he never came out of that hospital, passing away a few short weeks later, over Memorial Day weekend.
As it turns out, Pam and Benny’s second grandchild was born in that same hospital during this time, several floors beneath where Benny spent his last few weeks.
“I remember going up and down that elevator,” Pam recounts. “What an emotional roller coaster!”
Although Benny only got to meet his first grandchild, Pam knows that he would be proud of his family. Due to Benny’s illness, their daughter changed her major from teaching to medical field studies. And, one of Pam’s daughters-in-law, Stacey, works at Intellia Therapeutics alongside researchers who are developing next-generation engineered cell therapies for AML and other difficult-to-treat cancers.
New photos that include Stacey’s son, Pam and Benny’s third grandchild, now line the walls of Benny’s home in New Jersey. She and her family are building new memories every day, and have faith that scientific advances, like Intellia’s genome editing work, may someday stop AML.
Genome editing is the future. Although it didn’t come in time for Benny, maybe it can help someone else someday.