In her daughter’s memory, Hebron mom starts group to help other kids fighting cancer

When Rylie Hope Mogan was about 7 years old, she often complained of tummy aches, and her belly was distended, her mom, Lindsay Mogan of Hebron, recalled.

She took her daughter to multiple doctors’ visits over a couple of months and was repeatedly told that Rylie was constipated. Mogan was advised to treat her daughter with MiraLAX, an over-the-counter medicine, and sent on her way.

When another doctor gave the same advice, Mogan said, “I put my foot down.” She recalled saying, “I’m not leaving here until we have more answers. This isn’t right.” It was 5 p.m., and the pair drove from the pediatrician in Woodstock to a hospital in Rockford, where her daughter underwent scans that revealed “a football-sized tumor in her abdomen,” Mogan said.

They were quickly put into an ambulance and sent to Advocate Children’s Hospital in Park Ridge, where they received an unexpected, life-changing diagnosis.

They were told that Rylie had a rare cancer that forms in the connective tissue of the body called desmoplastic small round-cell tumors, or DSRCT. It was Stage 4, and she given about a 7% chance to live through the year. The news came only two days after her eighth birthday, Mogan said.

“That started a long, long road ahead of us, of her going through many treatments, and years of ups and downs,” Mogan said. “My daughter spent more of her time battling cancer than being healthy. We knew that every year was a blessing with her.”

Rylie, called “Hopie” by friends and family, lost her battle Sept. 24, 2022. She was 21.

About a year ago, Mogan started a nonprofit in her daughter’s memory, Hope for Warriors. It is led by family and friends, with Mogan as president; Rylie’s older sister, Haileigh Haugh, 28, of Twin Lakes, Wisconsin, as vice president; and nephew, Juno Ry Haugh, 2, as the “chairman of cuteness.” The mission supports children who are dealing with cancer and their families. The work is inspired by what Rylie had said she wanted to do: help other children battling cancer.

Alex Spivey, the nonprofit’s director of communications and a family friend, said she was one of Haugh’s high school teachers and was aware of Rylie’s battle. What the Mogans have created “is truly a testament not only to Hopie” but to their genuine concern that other families and children facing a similar battle have the support they need, Spivey said.

Mogan said the original plan was that she and her daughter were going to do this together.

“We would come back [to the hospital] and help patients get through this. We had ideas of what we were going to do, and one thing was to make care packages with the things she loves,” Mogan said.

Today, the group, which uses a logo that is a drawing by Rylie, facilitates art therapy, gathers donations and assembles care packages with items that helped Rylie while in the hospital, Mogan said. The team fills bags with things such as art supplies, fuzzy socks, galaxy lights, Nintendo Switches and Polaroid cameras with film so that, like Rylie, the children can take photos and make collages.

The cost of each care package ranges from $200 to $400. Last month, the group held its first fundraiser at Hoops Sports Bar and Grill in Hebron, raising about $15,000, Mogan said.

Kevynne Dudek is a child life specialist and family support coordinator from Advocate’s children’s hospital, where she met Rylie. At the fundraiser, she read a letter describing her experiences when handing out the care packages to other young cancer patients.

Dudek said the care packages help make “their hospital stays a little brighter and more bearable.” She shared a story about a teenage girl named Kaitlyn who finds “solace in art.”

“When Kaitlyn saw these art supplies, her eyes lit up, and she spent the rest of her hospital stay making bracelets and sketching on her new sketch pad, bringing her joy and a sense of normalcy during such a difficult time,” Dudek said.

She then spoke of an interaction with 7-year-old Eva. Dudek said she “walked into her room and noticed a camera hanging around her neck.” The girl showed Dudek “an album she had created to document her hospital stay. While this might not seem like something fun to document, as I flipped through the pages, I saw photos of her with her nurses and family, making every day look like a celebration,” Dudek said.

Dudek said it is not just in the gifts themselves but the “message of hope and support you are sending to these children and their families. It tells them that they are not alone in their fight, that there are people who care deeply about their well-being and are willing to take action to make a difference.”

After her diagnosis, Rylie, an artist who loved looking up at the stars and named her dog Dipper, a nod to the Big and Little Dippers, underwent chemotherapy and a stem cell transplant, her mother said. Rylie soldiered on, graduating from Alden-Hebron High School, where she was a cheerleader and dancer, and her family was grateful for those four years when she was considered cancer-free. But Rylie still was not able to leave it behind her. She had to have scans every three months, then eventually every six months, and she still dealt with stomach pain, had anxiety, fatigue and some depression, Mogan said.

Then, her cancer returned. Rylie’s first rounds of chemotherapy were so hard on her body, Mogan said, that when the cancer returned, she was unable to have the stronger chemotherapy that she needed.

During the following years, when Rylie was in the hospital, she and her mom spent time together and with other children who were newly diagnosed. They sat and chatted with them, and brought care packages.

“We wanted to let them know we knew where they were,” Mogan said.

When Rylie turned 20 in 2022, she learned that she had bladder cancer, her mother said. Some chemotherapy drugs are believed to increase the risk of bladder cancer.

“Her body was very, very tired,” Mogan said.

When she went into surgery for another stem cell transplant, “we didn’t end up leaving. She passed away.”

As doctors whisked Rylie away for that transplant, for the first time, both mother and daughter admitted they were scared. Before Rylie was intubated, she said, “I love you,” and Mogan said, “I love you, too.” Those were their last words to each other, Mogan said.

“I want her name to live on, and that is why I am doing this,” Mogan said. “This means everything to me.”