The Leo Project roars onward

Chilmark woman defies cancer, builds Kenyan resource center honoring late friend.

0
Jessica Danforth with a Kenyan student named Consolata. —Courtesy Jessica Danforth

After a four-year fight with recurrent breast cancer, Jessica Danforth isn’t laying low, she’s building a center for children in Kenya. Diagnosed in 2015 following unusual pain after a half-marathon, the part-time Chilmark resident had just begun a job in San Francisco. She had to leave that job and undergo treatment at the University of California San Francisco Medical Center. Throughout an odyssey of surgeries and chemotherapy, Jessica’s best friend, Caitlin O’Hara, buoyed her spirits with daily texts and phone calls. Caitlin had her own malady, cystic fibrosis, which took her life in 2016 after a double lung transplant. At Caitlin’s funeral, Jess vowed to do something profound in her memory. She did. 

With a laptop, a phone, and chutzpah, Jessica erected a resource center for kids in Jua-Kali, Kenya. She follows in the footsteps of her mother, Stephanie Danforth, who has long been committed to improving education there. The center is meant to provide extracurricular opportunities local schools can’t, such as music, art, and coding, which were mainstays of Caitlin’s. Called The Leo Project, the name is homage to O’Hara’s astrology sign and indicative of the mascot of St. Mark’s School in Southborough, where Caitlin and Jessica went to high school. The 5,000-square-foot building in Kenya is nearly complete, but Jessica’s fundraising efforts remain vigorous. On July 17, television actress and producer Amy Brenneman and Chilmark mixed-media artist Kara Taylor will host Jessica for a ticketed cocktail and performance event at the Kara Taylor Gallery. The Beach Plum Inn, Cathy Walthers, Kitchen Porch, Chilmark Coffee, and the Grey Barn will cater the event, which will include a performance by Brenneman, an undisclosed musical guest, and a silent auction. Ticket proceeds will be dedicated to the Leo Project. 

Indefatigable

“Medically she’s had a very long haul,” Stephanie, a retired pediatric nurse practitioner, said of her daughter. “Things have happened to her that I’ve not heard happen to other people at all. A lot of people who have breast cancer end up with a lumpectomy or a mastectomy, they heal well, and they go on. That was not Jessica’s journey, you know, 13 surgeries later and a recurrence thrown in.”

Despite her condition, Jessica proved charming. 

“When she would be leaving from chemo or when she’d walk in to get her chemo, every nurse there hugged her, and they were so sad when she was leaving, and she was too,” Jessica’s sister Carly Danforth said. “She has a way [about her]. She was everyone’s favorite patient because it’s not ‘Poor me,’ it’s ‘How about you? I want to learn about you.’”

After five months of chemotherapy, when it looked like she’d overcome cancer, it reappeared. 

“Both her oncologist and her oncological surgeon, both actually had tears telling her that she had a recurrence,” Stephanie said. “Neither of them had actually seen a recurrence so quickly like this in both of their 19 years of practice, and you know that night, her surgeon came over to her apartment and just sat on her bed with her with her arm around her until midnight.”

That surgeon was Dr. Laura Esserman, a medical legend whom Time Magazine named one of the 100 most influential people in the world in 2016.

“When you care for people, you learn so much,” Dr. Esserman wrote in an email. “You learn about the courage that others are able to summon. You see people at their weakest and their strongest. What impressed me so much about Jessica was her resilience. She had to face the enormity of decisions and the consequences of having a life-threatening breast cancer at such a young age — the challenge of having to lose a breast at a time when your life is in full blossom — the inability for her reconstruction to heal, and the yearlong saga before salvage with a skin flap. But through it all, Jessica found she had the power to get through yet another trauma. There is a certain radiance that glows within her that eventually allowed her to heal and triumph over each setback.” 

Jessica described Dr. Esserman as a truly wonderful human being, and noted she famously sings to her patients as they are administered anesthesia. The first song Esserman ever sang for Jessica was a request, the Beatles’ “Blackbird.”

Jessica credits vulnerability for strengthening her resolve: “Being afraid and being able to be OK with that,” she wrote in an email. “I would say that general anesthesia (x13) has taught me more about trust and the act of surrendering than anyone or anything else ever could. I can’t tell you the number of times that my medical teams said, ‘We have never seen anything like this,’ which — as a patient — is probably the worst combination of words to hear, but my surgeons and chemo nurses and my oncology team (and everyone else at UCSF) have become like family to me, and I keep showing up because I trust them.” 

Soul friends

“Cailtin always let her know that she was there for her no matter what,” Maryanne O’Hara, Caitlin’s mother, said. “She just had a really caring attitude toward Jess, and when Jess was diagnosed with cancer, Caitlin, who was so accustomed to medical issues, helped her so much, and learned everything she could about breast cancer.”

Caitlin, who would visit Jessica and her family on the Vineyard, loved steamers at Larsen’s and breakfast sandwiches at 7a, Maryanne said. And Caitlin and Jessica loved to unplug, eat pie, and drink milk, and daydream together at the beach in Chilmark. 

At St. Mark’s, it wasn’t long before they discovered each other.

“I can clearly remember Caitlin telling me about Jess,” Maryanne said. “It was one of those instant, soul-friend connections.”

“For the first year of treatment, I had Caitlin. We were both in our early 30s, and our friends were all getting married and having babies,” Jessica wrote. “We were on opposite sides of the country; she was waiting for a lung transplant, and I was immunosuppressed and going through chemo, so we were unable to see one another. We spoke and texted and emailed; not once or twice a day but constant communication. A Leo, she was fiercely loyal and infinitely protective. We spent hours talking about the things that we would do when we were both healthy again. First, a trip within the U.S. Somewhere with access to the best hospitals. And then Russia, because she wanted to see Red Square. After that, Kenya.” 

Caitlin died on Dec. 20, 2016, at the University of Pittsburgh Medical Center. 

“She was supposed to live,” Jessica wrote in her blog, Kenya Handle This. “She should have lived. She should have had the chance to use her new, perfect lungs; to see her oxygen saturation at 100 percent. But she had to wait too long for her transplant, and her body had been through far more than any should endure.”

Despite the devastating loss of her best friend, Jessica rallied. She rallied both for herself and for Caitlin. 

Atop a list of promises she made to her departed friend at her funeral, promises that included doing “all that I can to fix the organ donation system,” “to plant a garden that will mean for many what Prouty meant for you,” “to always be kind,” “to advocate for those who are unable to advocate for themselves; to always be aware of the plights of others,” Jessica said, “I promise to do something extraordinary. I promise to make you proud, and I promise to keep your light and your spirit alive.” It was this promise she and her family credit with pushing forward the Leo Project. 

“Jessica met her setbacks with humor and grace,” Dr. Esserman wrote, “and an amazing smile that lit up the room.” She recalled photographs Jessica had taken of the children she adored in Kenya. “In them, you see the joy and resilience of these children, reflecting what she herself had to find to get better.”

“I feel like I need to live — to really live — for Caitlin,” Jessica said, “and the Leo Project is a manifestation of that promise that I made to her.”

Jessica has also made promises to herself. “My goals and aspirations for the coming year(s) are first and foremost, my health,” she wrote. “I also aspire to do things differently than I did before cancer, because what I was doing before was clearly not working. If I am afraid of something, I do it. If I am tired, I take a nap. If I feel a certain way, I say it. I try to always be kind. I don’t spend time worrying about my 401(k) (or lack thereof), and have stopped comparing my path and my timeline to that of my peers. None of us have any idea how long we are going to be here and what is going to happen. If there is something that you have always wanted to do, do it. If you are miserable at your job, quit. If you are surrounded by anyone who is toxic, leave.”