On an early summer day in 2019, Danielle Leventhal stepped into room 205 at Seven Bridges Middle School in Chappaqua. Danielle, a 2012 graduate of Horace Greeley High School, had attended Seven Bridges, as did her younger brother Alex.
In a story that embraces the remarkable twists and turns of fate, Danielle was returning to Seven Bridges–on her actual 25th birthday–to speak to Brian O’Connor’s fifth grade class as a part of his curriculum on the CNN Heroes program.
Celebrating Heroes
For 12 years, O’Connor’s social studies class has watched CNN Heroes and discussed the 10 everyday heroes and their amazing accomplishments. Students then write a letter to one hero, sharing how they were inspired by their story. “We have sent out 5,000 letters in the last 12 years,” says O’Connor, who will teach the program for the 13th time this year. Many heroes write back and have even come into the classroom to meet the students and share more of their story.
CNN’s production team got word of O’Connor’s program and visited the school to film a three-minute segment for their 10-year anniversary special. O’Connor attended the live event at the Museum of Natural History in New York. There he met and connected with Brad Ludden, a 2016 Top 10 CNN Hero and the founder of First Descents, a non-profit organization that provides life-changing outdoor adventures for young adults impacted by cancer.
Jennifer Leventhal (Danielle’s mother) had stayed in touch with O’Connor over the years. When she saw the segment, she reached out to offer congratulations. “Jennifer also shared that Danielle had been diagnosed with cancer, had gone through treatment, and was going to take part in a First Descents program,” says O’Connor. O’Connor later invited Danielle to come to speak to his students about her powerful First Descents experience, which is what she joyously did that summer day in 2019.
Diagnosis
After high school, Danielle, a gifted artist, graduated in 2016 from the Sam Fox School of Design & Visual Arts at Washington University in St. Louis with a double major in painting and art history. She was busy painting and working in the art world when, in 2017 at 22, she noticed a pain in her shoulder and chest. It impacted her breathing on her runs, so she went to urgent care, but the EKG showed nothing. Danielle wasn’t satisfied. She requested a chest X-ray. It revealed a softball-sized mass near her aorta. “Danielle had excellent body intuition and her follow through helped save her life for another four adventure-filled years,” says Jennifer.
Despite the diagnosis of a rare sarcoma, Danielle had unrelenting hope balanced with a firm grasp on reality. “If you looked at a snapshot of Danielle and her high school friends and asked which kid could handle adolescent cancer the best? I’m sure Danielle’s name would not have come up,” says Jennifer. “She was gentle and perhaps even delicate, but she was indeed fiercer than we, or even she knew and funnier than she had ever been.”
William D. Tap, M.D. chief of Sarcoma Medical Oncology Service at Memorial Sloan Kettering (MSK) was Danielle’s oncologist. In addition to surgery, her treatments included proton therapy, a radiation treatment used to shrink the tumor, followed by chemotherapy, studies on acupuncture and eventually clinical trials of new drugs.
Sarcomas are a rare group of malignant cells that begin in the bones or soft tissues says Dr. Tap. “There are some 60 different sarcomas and for each sarcoma subtype there may only be a few hundred to a few thousand people diagnosed in the United States each year,” he adds.
Because sarcomas are so rare, and because youngsters often have lumps and bumps that are not given adequate attention, sarcomas are often misdiagnosed or receive a late diagnosis. “Sarcomas present with a remarkably wide range of symptoms from belly pain to shortness of breath,” says Dr. Tap. “Honestly, they are easy to miss.” Treating sarcomas in the young adult range (age 15-39) is very challenging. “The survival rate of pediatric cancers has increased greatly, but we need more research to discover how we can positively treat these rare cancers that are affecting young adults.”
This demographic also has a diverse range of needs, worries and concerns, specific to their age group says Dr. Tap. There are questions regarding their education, career, future fertility, and emerging independence. “For well-rounded care, it’s important that the medical team understand these unique psychosocial aspects and how they affect the patients’ life,” says Dr. Tap.
Danielle was an inaugural participant in Tap’s Adolescent and Young Adult (AYA) program at MSK. The program brings together care experts across specialties along with the patient’s oncologist. This can be a social worker or fertility expert–whatever is needed. “They usher the patient through treatment and assist with the stressors of their diagnosis,” says Dr. Tap. “The program also creates a peer group environment where patients can have meaningful dialogue and combat the isolation the patient may be feeling.”
Dr. Tap praises Danielle’s ability to grow with her cancer diagnosis. “She gained an agency and confidence that strengthened her relationship with her family and friends and that was dramatic to see,” he says. Her dedication to help develop the program for others to benefit even when her disease was threatening her life showed strength and resilience, which Dr. Tap says is a testimony to Danielle as a person.
Her mother recalls an early lesson Danielle took home from AYA. She learned that it’s your journey. How much you want to share is your choice, she says. “If you look at cancer as a slice of pie, it’s a small part of the whole pie. It’s not nothing, but it’s not everything either,” she says. As she got sicker, Danielle shared more. She wanted to create a legacy with intentions of being helpful to other young adults with cancer.
Sharing opened new doors. One day in New York City Danielle spotted Suleika Jaouad, who at 22 was diagnosed with leukemia and documented her journey in The New York Times column, “Life Interrupted”. Danielle thanked her for her articles and later hand delivered a portrait she had painted of Suleika. It was Suleika who encouraged Danielle to go on a First Descents trip. “She said it would change her life,” says Jennifer, “and it did.”
First Descents
Brad Ludden, a professional kayaker, was in his teens when his young aunt was diagnosed with breast cancer. He took her and her friends on a kayaking adventure and learned that outdoor adventure could be profoundly healing. Ludden founded First Descents to offer healing adventures to young adults impacted by cancer and other serious health conditions.
“First Descents” is a term used widely in adventure sports. It’s a feat that someone has completed before anyone else and merits respect, as in kayaking white water rapids that have never been descended,” says Emily Burick, First Descents development officer and now an ambassador for Danielle’s Dreams Adventure Program.
Burick says First Descents encourages participants to make the most of the time you have, in the places you are in, and the people you are with. Their tag line, Out Living It, is a play on words celebrating the spirit that participants embrace.
In 22 years, some 10,000 young adults have gone through the core program, which includes a weeklong adventure free of cost. Adventures range from rock or ice climbing to whitewater kayaking and surfing. Participants develop an unwritten bond and become like a second family and can continue to adventure with peers through the #Out Living It project.
Burick met Danielle on her weeklong First Descents ice climbing adventure in Ouray, Colorado. She knew her as Donut. “It’s a tradition that everyone gets a nickname. It happens sometime from when the staff picks you up at the airport and you arrive at the lodge, says Burick. “From then on you introduce yourself as that nickname. The beauty of it is that it allows you to assume a new identity and be free.”
Jason “Buck” asked Danielle which of her paintings were her favorite and she said, “A donut”. She had made many paintings, but her favorite was a series of donuts. The name stuck.
“Donut was kind, radiant, and joyful,” says Burick. “She took part in everything, and it was not without fear.” The program helps participants learn what they are in control of, and what they aren’t, how they can take on the challenge and how not let cancer define them.
“It was important for Donut to be an advocate for herself and others, she became so involved and that was very characteristic of her,” says Burick. Danielle/Donut introduced First Descents to Soul Ryeders, a Rye-based organization that offers resources, programs and community support to those impacted by cancer. The two organizations have since established a partnership. “She didn’t want her experience to just be about her, she wanted it also to be about others, that was who she was to her core,” says Burick.
Sharing and Caring
It was in that spirit that Danielle returned from New York City to Seven Bridges Middle School. “Danielle was an amazing role model, she was so prepared, had an amazing presence, and connected with the students as if she were a veteran teacher,” says O’Connor. She was candid and age-appropriate in speaking about her treatments and her ice climbing adventure with First Descents. She encouraged the students to be kind, appreciate family and friends and reminded them if they didn’t feel well, they must tell someone.
Danielle did not know that O’Connor had a surprise planned that day. He had invited Brad Ludden to Skype into the session and they all sang happy birthday to her. “In my 22 years of teaching that was the most memorable moment,” says O’Connor. “The room was filled with good vibes and the kids were so happy to honor her. I will never forget it, and I believe the students will remember it too.”
Danielle’s Dreams
When the pandemic hit, Danielle devoted herself to her artwork, painting daily and instead of going out, embracing what she called an “In Living It” spirit.
Danielle passed away on August 4, 2021, at 27 after outliving terminal cancer for four years.
Her legacy continues as Danielle’s Dreams works to “sprinkle joy through art and adventure” for young adults with cancer. Two programs, Danielle’s Dreams Adventure Program, First Descents and Danielle’s Dreams Art Programs, AYA at MSK, allow you to support Danielle’s Dreams through tax-deductible donations.
And this month you can take part in a Virtual Fitness Fundraiser honoring Danielle on her birthday. On Wednesday, June 15, 2022 at 7 p.m. Lauren Chiarello Mika, a fitness instructor at Memorial Sloan Kettering Center and founder of Chi Chi Life, hosts a 45-minute virtual Pilates Fusion Class, which is appropriate for all ages and abilities.
Lauren is a two-time Hodgkin’s lymphoma survivor who has been cancer free for 13 years. She also took part in a life-changing First Descents adventure and is now mother to identical twin boys born in 2020.
Jennifer and Danielle took Lauren’s virtual Pilates Fusion class in 2020-2021. “I called them the Dynamic Duo,” Lauren says. “Here was a mother and daughter moving beside each other, bonding physically and emotionally.” Danielle made a painting of Lauren and her boys, which she sent to her along with a meaningful note. “I will always treasure these,” says Lauren. “It shows the spirit of giving that Danielle embraced.”
Lieutenant’s Island
No. 2, Oil on Canvas, 2019, winner of the “Popular Vote” award for the cover of the 2020 Wellfleet travel guide
First Descents Virtual Fitness Fundraiser
Wednesday, June 15, 2022 at 7 p.m.
Take part in a 45-minute virtual Pilates Fusion Class, hosted by Lauren Chiarello Mika. The low-impact, mindful movement class is appropriate for all ages and abilities and supports the mission of First Descents. It’s a perfect way to honor and celebrate Danielle on her birthday and offer adventure to young adults like Danielle impacted by cancer.
Your $45 registration fee includes the virtual class and a custom-designed “Donut” hat in honor of Danielle.
Register or donate today: https://support.firstdescents.org/event/danielles-birthday-fundraiser/e402259
Resources
- Danielle’s Dreams, daniellesdreamteam.com
- First Descents, firstdescents.org
- Soul Ryeders, soulryeders.org
- Chi Chi Life, chichilifenyc.com
- Adolescent and Young Adult Program at MSK, https://mskcc.org/experience/patient-support/lisa-and-scott-stuart-center-adolescent-and-young-adult-cancers-msk/when-young-people-get-cancer
