When LaTisha Culler speaks of her late daughter Ayanna (Yanni), it’s easy for those who never met her to feel as if they know her intimately.
“I used to call her my little ‘Punky Brewster,’” said LaTisha, a big fan of the TV show.
“Yanni danced to her own tune, whatever she felt was right. She loved people, no matter if you were old, young, Black, white. She loved, loved babies. She had a relationship with Christ and anyone who came in contact with her, she would present that whether it was her tight hugs or her bright smile. She just loved life. She loved school. She loved reading, journaling, art. She loved all the things that little girls, pre-teens love to do – she loved jewelry and to shop. Shopping with her was an event! Bath & Body Works was one of her favorite stores and not just to get things for herself but to pick up things for other people. Most of all, she loved family and family get-togethers and, when she was diagnosed, she wanted to make sure everyone stayed together.”
Yanni was first diagnosed at age 7 in 2014 with a tumor of her left adrenal gland. The treatment was successful, and she would remain cancer free for four years. But an aggressive, stage-four neuroblastoma would ultimately take Yanni at age 13 on Feb. 25, 2020. She was a seventh grader at AIM Academy in Canton.
The Culler family – LaTisha and Arlune, Yanni’s big sister, A’niah, and younger brothers Christian and Bryson – would have to figure out life without her.
Ayanna Culler was affectionately known as “Yanni” to friends and family.
The Cullers developed a close relationship with several of Akron Children’s doctors, nurses and therapists with during Yanni’s cancer journey.
The Haslinger Family Pediatric Palliative Care Center played an especially central role in coordinating care, providing emotional support, and giving Yanni creative outlets to express herself. As Yanni’s cancer returned and her prognosis became less hopeful, Dr. Sarah Friebert, the founder and long-time director of the center, helped the family through difficult discussions, and eventually end-of-life decision making.
“I have so much respect and love for Dr. Friebert,” said LaTisha. I thank God for giving us people who were willing to give us the truth but also be in line with where we were in believing that the Lord would keep Ayanna here.”
LaTisha said Dr. Friebert helped lead her family through those most difficult discussions with dignity and respect.
“This photo of Yanni will always be one of strength, inspiration & resilience,” said LaTisha. “She was in so much pain that day, and I wasn’t sure she was going to make it to school. There were lots of tears. All of a sudden, she said she was going to go. She came downstairs looking beautiful as always.” The school had a surprise for her. Everyone wore gold to celebrate her as she entered another long battle through treatment.
Processing a Diagnosis Through Art
Yanni was a naturally creative soul who benefitted from the services offered by Akron Children’s Emily Cooper Welty Expressive Therapy Center.
One day, LaTisha asked if the hospital had any blank journals, knowing how much her daughter loved to write. She never expected that Akron Children’s would have someone like Nicole Robinson on staff. Robinson, in fact, is the only narrative medicine coordinator on staff at a children’s hospital in the United States.
“Yanni and Nicole soon began writing poetry together,” said LaTisha. “They hit it off right away, and it gave Ayanna some type of normalcy.”
Yanni with Nicole, Akron Children’s narrative medicine coordinator.
One memory remains very poignant for LaTisha.
The Expressive Therapy Center was hosting its annual spring art show, “Create. Heal. Inspire.” showcasing the work of its patients – in visual art, poetry, dance and music performance.
“Yanni was set on reading one of her poems, but she was going through another intense round of treatment,” said LaTisha. “This was something different from chemo. This was nerve targeted, so she was very, very, very sick. She was weak and fragile, and they weren’t even going to let her [leave her room] to go to the show. My husband ended up reading her poem for her, but she was there to hear it in a wheelchair. And that was a moment where the Palliative Care Department really put a stamp on my heart.”
Yanni with family in the Expressive Therapy Center, where her art was showcased.
Yanni wrote this poem with Nicole in 2014. It’s titled “Flowers.”
In addition, LaTisha said working with art therapist Emily Grabo allowed Yanni to “still be free and be a kid. I would not say it totally took her mind off the cancer, but it just allowed her to be free and do normal things.”
She also loved working with music therapist Liz Germano, especially with the Native American flute.
“There would be days when she was in pain and, in place of massages, she would request Liz come and play the flute and other instruments as well.”
As the cancer progressed, the therapists even made house visits to keep in touch with Yanni.
“What I loved about this was our other kids were part of it too,” said LaTisha. “It was a family affair. They were not just taking care of the patient but taking care of the whole family.”
Working with Nicole, Yanni wrote three poems – one for her mother and father, one for her sister and one for her brothers, and she was adamant that she wanted Nicole to wait to give her family member the poems after she had passed.
“Her poems were messages she left behind just to give us comfort,” said LaTisha.
“When your family is going through all of this, and things are happening rapidly, you don’t have time to stop and think – we should do this, should we do that,” she said. “They are a blessing. They were a blessing to us in the sense that we didn’t even know what questions to ask. They were right there to step in and fill that void. I would never have thought about capturing our daughter’s heartbeat. I didn’t know that was a thing but when they presented that us to with her favorite worship song, ‘Break Every Chain,’ played to Liz’s flute, that was meaningful to us. And the day she was put on hospice, they had our family create a piece of art with all of our handprints. You are doing all of those things and you are thinking, ‘Is this really real? Is this really happening?’ And afterwards you are just really grateful that they had they kept us up with those acts of kindness.”
The family handprint project guided by Akron Children’s Palliative Care team.
Paying it Forward
September is Childhood Cancer Awareness Month and September 13 is Yanni’s Birthday, so it seemed like the right month to continue to celebrate her.
“Our family loves sports, so we decided to have the ‘Gold Games’ in September, honoring families and children who have gone through childhood cancer journeys at their high school football games,” said LaTisha.
So far students from Alliance, St. Thomas and St. Vincent/St. Mary High Schools have been honored with a special football, gifts and recognition during their Friday night games.
Football players purchase sleeves honoring the child and these funds both directly help the families and a scholarship in Yanni’s name in the Expressive Therapy Center.
LaTisha with Akron Children’s Palliative Care team in matching “Yanni’s Community” shirts for the annual Gold Game.
Sharing Yanni’s Story
LaTisha is still working with Nicole on two books. A book of her own has a working title of “Pieces of Peace that God Gave Me.”
“It’s basically tracking moments in time throughout our journey when God answered our prayers or sent someone or something to help us even before we knew we needed the help,” said LaTisha.
They are also working to publish a children’s book authored by Yanni. It will include a few of her poems and will follow the story of a little girl with cancer who communicates with an angel.
LaTisha’s dream would be to make the book available to newly-diagnosed children.
“It’s not a sad story,” said LaTisha. “It’s her prophetic way of letting children know they’re going to be all right and that God is watching over them.”
Yanni requested a sunflower theme party for 13th birthday, her last. In her later research, LaTisha knew there was something special about this connection. “When there is no sun, when things are dark and not the greatest, sunflowers turn to each other to draw for strength.”
