In the photo, 3-year-old Maverick Koll, wearing his favorite “Wild Kratts” goggles and a dinosaur-themed outfit, grips the handlebars of his new tricycle in glee and excitement.
“Despite all that Maverick has been through in his short life, he has persevered and has always remained a strong-willed, loving and happy soul. This picture represents his strength in so many ways,” his mother, Niki Koll, wrote in a description of the photo. After being diagnosed with chronic granulomatous disease, Maverick underwent a bone marrow transplant at University of Minnesota Masonic Children’s Hospital when he was 2 years old. He spent seven weeks receiving care in the hospital.
The Kolls and six other families captured many such tender and profound moments in 2017 during the hospital’s second “Perspectives” project.
“Perspectives: A Visual Journey of Patients and Families from University of Minnesota Masonic Children’s Hospital,” represents a collaboration between photographer Jim Bovin, the hospital’s Child-Family Life Services department and the Creative Arts Therapy branch of the Integrative Health programs. The first Perspectives project debuted in 2016.
As part of the project, Bovin provided cameras and photography training to the families—all of whom have children who were or continue to be hospitalized for a severe or chronic health condition. Working with Bovin and Child-Family Life staff, the families documented their healthcare journey at University of Minnesota Masonic Children’s Hospital. They shared their experiences and photos in a curated exhibit unveiled at the hospital on Feb. 19, 2018.
A generous donation from the Margaret Hagen Smaby Fund for Innovation in Arts and Healing through the Earl E. Bakken Center for Spirituality & Healing enabled the effort. Fundraising from Fashion Fest, a night to sip, shop and support University of Minnesota Masonic Children’s Hospital, helped make Perspectives possible.
The families shot more than 14,000 photos throughout the project, which has become a powerful coping tool. Perspectives has allowed families to explore their feelings while also sharing their stories and the impact their illness has had on their lives, according to Bovin.
“Sometimes they are capturing a candid, silly or light-hearted moment. Other times they would capture situations where their child is having a very difficult day and you see that emotion,” Bovin said at the unveiling of the project at the children’s hospital at a special ceremony on Feb. 19. “I encourage parents to capture all of these moments; to visually communicate with others who might not understand what their day-to-day life is like in the hospital.”
“This partnership between Child-Family Life Services and Jim Bovin is another great example of how collaboration between professionals in our hospital helps nurture and support our pediatric patients,” said Pediatrician Lynn Gershan, MD, who is the medical director of the Integrative Health program at the children’s hospital. “MaryAnn F. Kohl, a well-known art educator, said: ‘Art is as natural as sunshine and as vital as nourishment.’ We couldn’t agree more.
“We have seen that patients who learn this new skill feel empowered and gain a sense of mastery and control that plays a role in their healing,” Gershan added.
“Doing this project was one of the best things I could have done for our family and for Maverick,” Niki Koll said. “This project has been such an amazing gift of healing for us. Maverick most likely won't remember much of anything as he is so young, but I want him to know what he endured and has overcome.”
“Madilyn was intubated on a ventilator for 36 days and was not able to feed by mouth for 42 days total. This photo captures the moment when we were finally able to start bottle feeding again. The speech therapy team worked with her quite a bit at the beginning to get her to take from the bottle. Luckily, she hadn’t forgotten how to latch onto the bottle. Feedings started slow though. She only took a third of an ounce the first time, and it took her about five minutes. It has been a long process, but she has made tremendous progress since then.”
-Geoffrey and Amanda Clarke, parents
“This picture was taken during one of Nathalia’s chemotherapy treatments at the hospital. The photo represents so much: strength, determination, hope. Strength, because Nathalia has already endured so much, including cancer treatment and major reconstructive leg surgery. Determination, because she will not allow this cancer to define her life. Hope, because she knows this is just part of the journey on the road to defeating this ‘beast.’”
-Kathryn Augusta, mother
“Despite all that Maverick has been through in his short life, he has persevered and has always remained a strong-willed, loving and happy soul. This picture represents his strength in so many ways. The same day he had to go down for a CT scan, he got this tricycle and refused to give it up. Maverick spent nearly seven weeks in the hospital, but only went one day without riding his trike. He loved to strap on his ‘Wild Kratts’ goggles and ride in circles around his room, which made me very dizzy trying to keep his IV lines from twisting up! Once Maverick was able to leave his room, he spent hours every day cruising through the halls of the hospital’s transplant floor. He went so fast we all had a hard time keeping up!”
-Niki Koll, mother
“Eddie was diagnosed with heart failure when admitted on Jan. 9. He needed constant medication to stop the heart failure from progressing. To deliver that medication, he had a PICC line placed on day three. This picture was taken on day 266, when Eddie was momentarily disconnected from the PICC line and jumped out of bed to run around the room. Eddie understood he needed to be in the hospital and on medication; he never complained about that. For the most part, his attitude was pretty good. But this picture shows how he truly felt about constantly being connected to an IV pole.”
-Christina Kunze, mother
“Hurler syndrome children develop joint stiffness, which makes simple movements like raising their arms difficult. At physical therapy, we were always looking for fun ways to have Juliette raise her arms. Bubbles were a hit every time! This photo captures how we would like to remember her bone marrow transplant journey: Juliette’s tired, worn-out body is recovering its strength and achieving milestones that would have otherwise remained out of reach. But she is oblivious to all of this. She only thinks about how much she loves bubbles. The Perspectives project is also meaningful because it allowed us to document the bond between Juliette and the brother who donated bone marrow to save her life.”
-Natalie Anaya, mother
CORAH AND EMMAH OHLQUIST
“This picture means so much to us. This was the day Corah had a gastric tube placed in her tummy. Our other daughter Emmah was SO concerned for her baby sister that she started to cry when they took Corah away for her procedure. We tried to keep Emmah busy, but she kept asking about Corah.
When we were finally able to see Corah again, Emmah asked for a stool so that she could see her sister. I tried to help her, but she pushed me away and said ‘No, me do, Mom.’ I knew I needed to take a photo of Emmah because she was trying so hard to see Corah. Emmah was diagnosed with stage 4 neuroblastoma in 2016, and went into remission in 2017. Corah was born in June 2017 with a congenital heart defect. We have had so many ups and downs. It meant the world to my husband Jeremy and I to see how much love Emmah had for her baby sister.”
-Chelsee Ohlquist, mother
WYATT, HARPER AND ALEXANDER ZAVALA
“Our triplets Wyatt, Harper and Alexander were delivered nine weeks early, and needed NICU care. This photo represents the first time I was able to hold all three of my babies together. I happened to be in the nursery by myself that day, and our primary nurse Tara set everything up so I could hold them all at once. It was a surreal moment, both exciting and scary at the same time. Because there I was in this quiet, private nursery, holding and staring at these three infants and they were mine. A moment in time I will never forget.”
-Kari and Jaime Zavala, parents