Chuck’s Story

Chuck’s Story

Chuck is a self-professed type A personality. An ‘Irish Catholic kid from Boston,’ he reached the top of the corporate ladder in a demanding position as Vice President of Business Operations with the National Fire Protection Association. Naturally, he tackles any challenge as if it were a business problem by gathering all the details and forming a plan of action. This has been his approach to his fight with cancer.

Chuck was diagnosed with Renal Cell Carcinoma (RCC) in 2015, a form of kidney cancer that originates in the lining of the small tubes (tubules) within the kidney.

A father of four girls, he was planning a trip to see his oldest daughter at college during parents’ weekend. He was tired, having lower back pain, and fighting a serious cold. Perhaps, he thought, he was feeling under the weather from burning the candle at both ends. It was budget season at work, and he was working long hours. He stayed behind while his wife, Liz, and his younger daughters went on with the weekend. When he noticed blood in his urine, he thought maybe he had a urinary tract infection from the antibiotics he was taking for his cold. But then there was more blood. Liz, a pediatric nurse, urged him to visit his primary care physician. After a number of tests revealed nothing, his primary care physician wasn’t satisfied. She recommended a CAT scan just to be sure.

That call came at six o'clock in the evening. His doctor told him he had a mass the size of his fist inside his right kidney. Facing significant uncertainty Chuck rolled up his sleeves and began assessing the information so that he could form a plan of attack.

A Difficult Treatment Journey

While RCC is typically diagnosed in older adults, Chuck was only 48 at the time. Chuck and his primary care physician teamed up with the doctors at a world-renowned cancer center in Boston to quickly develop a plan to schedule the removal of the right kidney. Post-surgery, Chuck entered his first clinical trial and went into 2016-17 thinking and feeling cancer free, taking prescribed medication and being continually screened.

“Post-surgery was tough but once I got past the first year, I was doing quite well. I was still able to do my job, working in the career I love. I’m a very driven person, so being able to do the things I did before my cancer diagnosis helped keep me in a positive state of mind,” he said.

But in the summer of ’17 came more disappointing news for Chuck. The cancer was back, growing, and spreading throughout his lungs. Surgeries to remove the growths could not keep up. At this point, in 2018, Chuck’s doctors presented an opportunity to participate in another clinical trial involving a combination of two approved therapies in people with advanced kidney cancer. The treatment helped for two years, until the side effects risked too much damage to his other healthy organs, including his remaining kidney.

Now Chuck is collaborating with his doctors and his medical team on a new action plan as his scans continue to show signs of metastases. He has the same determination as he had in the beginning, meticulously and systematically chronicling his history, researching the latest advancements in kidney cancer treatments, and working as a partner with his care team. He says, “there have been a lot of ups and downs throughout this journey. But there’s no looking back. We can’t whine about why this didn’t work or why that didn’t work. We can only stay focused and keep moving forward.”

Thankful for Faith, Family, and Friends

Chuck’s family continues to drive him. “I want to see our youngest daughter graduate from college. I have been lucky to see three out of the four girls’ college graduations and know the engagements and then weddings will soon follow. My goal is to walk all four daughters down the aisle and be here for the birth of our grandchildren with my wife Liz. Ninety percent of this fight is the attitude you bring and losing is just not in my vocabulary,” he says with a smile.

Chuck also recognizes that his diagnosis and ongoing treatments have been a roller coaster for his family, taking an emotional toll on his daughters particularly. “I have the easy part, I’m the patient, I know how I feel,” he says. Chuck is grateful for his family’s extensive network of support, being one of three children and his wife, one of six. He also sees his healthcare team as part of the extended family.

In July of 2021, he reluctantly agreed to take a leave of absence from work to focus on his health. Not surprisingly, he’s using his extra time to connect with the RCC community and work as a speaker and advocate with organizations focused on kidney disease.

“I’m just an ordinary guy fighting an extraordinary disease,” explains Chuck. “We have made great strides in understanding Renal Cell Cancer over the last ten years. When I started my fight there were only a handful of potential treatments for patients like me. Now there are close to twenty FDA approved therapies to fight this disease. The progress we have made gives you hope, and as a patient, hope is really the last piece you can hold onto. It’s the most important part for all of us.”

Chuck has not participated in any CRISPR Therapeutics studies. Chuck was compensated by CRISPR Therapeutics for his time.