Addie Mae Jessen was two years old when she and her parents moved from downtown Greenwood to a farm east of Franklin. The tiny, blonde farm girl spent her days playing with chickens and goats, riding the tractor, and pedaling around the farm on her bicycle or her little pink tractor.
In July 2020, her mother, Kate, noticed that Addie’s head was tilting to the side. Initially, the doctor thought it was a neck sprain that would improve with ice and rest. A mother’s intuition told her that there was something more.
“We were watching the movie Frozen and Addie said, ‘Mommy, I see two Elsas,’” says Kate Jessen, who has a background in neuro-ophthalmology. “Her double vision triggered my neuro brain.”
Over the next few days, Kate and her husband, Zach, noticed Addie’s depth perception was off as she maneuvered the playground equipment. After a second opinion, a CT scan revealed a mass in Addie’s brain, before an MRI confirmed catastrophic news. Addie had diffuse intrinsic pontine glioma (DIPG). It was a terminal cancer due to the location of the tumor on her brain stem, making it inoperable.
“We were told she had six months to live and that we should go home and make memories,” Jessen says. “We had other plans. We were going to do everything we could while praying for a miracle.”
Research led them to The Cure Starts Now, which funds pediatric cancer research and clinical trials. It also provides support for families enduring childhood brain cancer. The family went to Cincinnati Children’s Hospital to take part in a clinical trial completely funded by The Cure Starts Now. Although Addie’s condition was incurable, they knew her participation in the study could potentially help other children. The trial required Addie to swallow close to 90 pills a week. She also underwent 30 rounds of sedated radiation and was constantly getting stuck, poked and swabbed.
“She was a warrior through it all,” Jessen says.
Ultimately her tumor shrank, which gave her more quality time.
One of the hardest parts of Addie’s treatment was how radiation affected her appearance. Chemo caused her hair to fall out, and steroids prompted weight gain.
“She didn’t want to look in the mirror because she didn’t like her reflection, which broke my heart,” Jessen says. To cheer her up, the Jessens were able to buy Addie a rescued retired barrel horse from Texas with funds raised by Michael Clark, co-founder of BAM Weather and family, after finding out that Addie couldn’t travel to Disney World.
“Addie called Chester her white unicorn,” says Jessen, who notes that animals helped Addie’s emotional health during her journey. “We took her out to see the animals all the time, and Chester would lay his head on her shoulder.”
She got a small camper through the Make-A-Wish Foundation, and Addie would sit in it and watch the horses.
By December 2020 she had finished the bulk of radiation, and she had to have emergency shunt surgery on her brain because spinal fluid had built up, causing extreme pain and nausea. The following month she was diagnosed with a secondary cancer called leptomeningeal disease, which is cancer in the cerebrospinal fluid and leptomeninges – membranes that surround the brain and spinal cord.
“To get diagnosed with a second terminal cancer was a gut punch for us,” Jessen says.
Although doctors suggested she would likely only survive a few more weeks, Addie had other plans. She lived another five months with good quality, because of another clinical trial she was able to participate in at Cincinnati Children’s Hospital.
When Addie was nearing the end of her life on Earth, Jessen recalls a difficult conversation she shared with her precious daughter. Addie was lying in her hospice bed in the living room, and Kate cradled her hand and softly told her that she didn’t have to stick around any longer if she was ready to go.
“I said, ‘I know you’re in a broken body right now. It’s OK to go run and be free and ride your bike,’” says Jessen. “I felt a squeeze on my hand. It was time.”
Addie passed away on May 13, 2021. Because her case was so unique, doctors asked the Jessens if they would consider donating their daughter’s full brain to research. They agreed. To this day, doctors are still learning from Addie’s brain. They are also sending pieces of her tissue to different places that are researching this type of tumor.
“It’s the gift that keeps on giving, and we feel it’s what she would have wanted to do because she always liked helping others,” Jessen says. “Her brain was her last donation – her gift of life to hopefully save another child in the future or give them a better outcome.”
After Addie passed, the Jessens wanted to continue her legacy by helping other children, so they started The Adalynn STRONG Chapter with The Cure Starts Now. Since 2021 they have raised more than $220,000 for pediatric brain cancer research in Addie Mae’s honor.
“They focus on the home-run cure,” Jessen says. “Their thought is that if they can cure the biggest cancer bully – DIPG – then they can use those technologies to cure all of cancer.”
In June 2024 the Jessens put on their first annual Storm Cancer event, presented by BAM Weather, to raise money for The Cure Starts Now. Even though it was a soggy, rainy day, the event attracted 400-plus participants and brought in more than $44,000 for pediatric cancer research and clinical trials.
When Amanda Kilgore and Michael Clark, two of the owners of BAM WX, first heard about Addie’s battle with brain cancer, they wanted to get involved.
“As parents of young children ourselves, their situation deeply affected us,” says Kilgore. They believed that the work of Adalynn STRONG and The Cure Starts Now was incredibly important.
“They not only fund critical research, but also provide essential support and a sense of community to families facing this devastating disease,” Kilgore says. “We are honored to be able to team up with them and help in any way we can.”
This year’s 5K will take place on May 17, which is National DIPG Awareness Day.
The Jessens now have twin children, Wrenlee and Waylon, who turn 3 this month. The twins, born on the same week that Addie passed, resurrected joy in Kate and Zach’s lives.
“It was so quiet after Addie died,” Jessen says. “Now the cartoons are on in the background. It’s chaotic and noisy again, and that’s nice.”
Jessen says the biggest life lesson Addie taught them is to always choose joy.
“Everyone deals with different levels of stress every day, and Addie would always say, ‘It’s going to be OK,’” Jessen says. “If she can choose joy, so can we. Addie never let cancer steal her joy. We find solace in knowing that this life is not our destination, and we will see Addie Mae again one day.”
