Jenny’s story: A tumor, a dragon slayer, and the gift of time

Jenny Carr and the book she wrote for her neurosurgeon, Vince DiNapoli, MD, PhD.

“It was a good story,” Jenny’s husband says. “There were a lot of good things.”

There wasn’t a cure, of course. There is rarely a cure for glioblastoma multiforme, the most virulent of brain cancers. But there was the gift of time, a year and a half beautifully spent.

Jenny Carr appreciated that gift, every precious moment of it, and her thank you to her neurosurgeon, Dr. Vincent DiNapoli of Mayfield Brain & Spine, was a personal testimonial unlike anything he had ever received.

Jenny had already passed away when her husband, Terry, presented Dr. DiNapoli with a children’s book, Vincent the Dragon Slayer, that Jenny had written. A kindergarten teacher for 30 years, Jenny was a story teller who saw heroes, joy and hope wherever she looked.

When Dr. DiNapoli held the book in his hands, he felt overwhelmed. A lump welled up in his throat.

The 18-page story, illustrated by Ben Williams, is about Princess Jenny, whose castle is invaded by an evil dragon. Princess Jenny chooses Dr. DiNapoli, “a great knight from the land of West Virginia,” to slay the dragon and fight for her.

Dr. DiNapoli removed as much tumor as could be seen during a demanding, 7-hour operation. He spared all eloquent tissue, so that Jenny would still be able to talk and walk. Jenny then underwent radiation therapy and chemotherapy. “It’s a difficult diagnosis to deal with,” Dr. DiNapoli says. “The surgery and radiation take over your life, at least for a short period of time.”

After Jenny recovered from her treatment, she felt good. In a two-page letter to Dr. DiNapoli at the end of her book, she wrote that the operation gave her an amazing gift. “It gave me extra time to spend with my family and friends. I can tell you, I didn’t waste that time.” She enjoyed Thanksgiving, two Christmases, a trip to Florida, a cruise, and a few hundred simple but priceless days with her family. Jenny understood that while time is finite, its value is infinite.

Jenny’s approach to mortality begs our attention.

“She used the time she had to her best advantage,” Dr. DiNapoli says. “I think it’s a good message for our cancer patients because many of them spend so much time focused on ‘How am I going to beat this? Where am I going to go to get the next best treatment?’ They spend so much time on that, they don’t take time to do the things they want to do. It’s important to seek the best care you can for yourself, but you also need to take the time to spend with your family. She had 18 months to do the things she wanted to do.”

Eventually, the glioblastoma returned.

“We know that, ultimately, just taking the tumor out will not do the job,” Dr. DiNapoli says, reflecting. “It is glioblastoma’s deadly nature to infiltrate cells unconnected to the tumor mass. Even years ago, when they took out whole lobes of the brain, resecting even margins around the tumor, the cancer still came back. So even though taking out that tumor helps survival and prognosis, we know that the tumor is not a local phenomenon. This disease process is something different. There is something in the immune system in the brain that is allowing these tumors to occur.”

Someday, when the cure for glioblastoma arrives, Dr. DiNapoli says, it will not involve surgically cutting out the tumor. It will be an entirely new therapy. “It will be something coming out of the immunotherapy realm, something that will come out of the body and attack the cancer cells and kill them off.”

Jenny was fine, Terry says, until the last couple of weeks, when her condition began to steadily worsen. She passed away in February 2017 at the age of 59.

“It turned out the way it turned out,” Terry says. “We had this whole year that was pretty good. We went to Florida. We walked a mile on the beach. We had a great year.”

Jenny remained thankful until the end. “Even though the outlook for my situation has changed, I want you to know that I consider your surgery on me an amazing success,” she wrote. “To me, you will always be Vincent the Dragon Slayer.”

— Cindy Starr