Last year, Jennifer Keenan Giliberto, a professional photographer, focused her lens on a cancer journey. She captured gut-wrenchingly powerful moments inside hospitals as well as tender moments at home where a husband and wife hold hands and sip tea.
Giliberto felt a deep connection to the project with Josh and Jenna Buehler of Atlanta even before she snapped the first photograph. Giliberto was diagnosed with a brain tumor in 2007 and underwent surgery a year later.
About a year ago, The Atlanta Journal-Constitution wrote a feature about the photo documentary, featuring more than 250 imagesbeginning in mid-March 2015 at Emory University Hospital Midtown, where Josh and Jenna Buehler huddle together in a hospital pre-op room before surgery, and then going inside an operating room to let viewers see the surgery to remove the brain tumor.
Since then, Jenna, 30, gave birth to a baby girl, Reilly, in September. And sadly, Josh died on Nov. 6. He was 41 years old.
Jenna said recently her goal of the photo documentary remains the same: to unveil some of the mysteries of glioblastoma, the most common and most aggressive form of brain cancer, and to also raise awareness for the need for supporting research for brain cancer.
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“I hope it makes brain cancer personal,” Jenna said about the photo project. “What I found most disturbing was toward the end of his life, there was more hope in hospice care than there was with treatment. Josh was not afraid to put his body through anything, He would have done anything to have the opportunity to raise his daughter, but there weren’t even clinical trials for his recurrence. And without funding, there are no clinical trials, no hope.”
In the photo project, Giliberto follows the Buehlers as Josh undergoes radiation, rehab therapy, medical appointments, life at home and later when he begins to wear Optune, a new and highly innovative device that must be worn on the head almost around the clock, sending painless electromagnetic waves to the brain to stop cancer cells from spreading or dividing. She captures moments of apprehension and anxiety, as well as light and playful moments throughout their journey. And she is there to capture Josh as he slips away.
Jenna said Josh had his “good moments, and bad moments” up until the very end. He started having seizures in August, and his health continued to decline.
“We had a lot of friends and family concerned Josh was not aware Reilly had arrived, and when I told him, he laughed. He knew she was here,” she said. “I remember we talked about how perfect she was. … He held and kissed her, and he looked at her; otherwise, he was unable to parent her.”
(To see the complete photo documentary, go to www.thisisdocumentary.com. Warning: This documentary covered a journey that included medical procedures, so some photos may be graphic.)
In December 2014, Giliberto approached her Emory neurosurgeon about her idea for the photo documentary, and he helped identify Josh as a good candidate for the project in March 2015.
Giliberto connected with Josh and Jenna on the eve of Josh’s surgery to remove a cancerous brain tumor. Josh and Jenna Buehler said they immediately felt at ease with Giliberto. They also said they drew support from Giliberto, and felt comfortable asking her questions about the surgery, recovery process, the emotional toll of a cancer diagnosis. She titled the project “This is … .”
“My goal from the outset was to tell the visual, chronological journey of a patient with brain cancer and convey the magnitude of the experience. I set out to open the door, pull the curtains back and expose the viewer to the entirety of the brain cancer experience often veiled from public view,” Giliberto said. “For 20 months, it has been a privilege to document Josh, Jenna and more recently, Reilly’s lives and do so transparently and honestly. I hope these images generate an emotional response and viewers feel the love, strength, perseverance and commitment between Josh and Jenna, and eventually come to some understanding of what this journey is for patients and their families.”