'They Deserve To Be Seen': Mom Pushes For Childhood Cancer Awareness

MANHATTAN, IL — The Blevins family of Manhattan were living a pretty normal life in the spring of 2021. Kaylee and Doug were raising two young children: Haven, 5, and Wyatt, 1. They had just moved to Manhattan from Lockport in March. They enjoyed spending time with each other, being out in the community and going to church. All that changed on Sept. 13, 2021.

That's the day Wyatt's life, and the lives of everyone in the family, was instantly turned upside down. That's the day Kaylee and Doug had their worst fears as parents confirmed. That's the day Haven learned that her brother was very sick. That's the day Wyatt was diagnosed with acute lymphoblastic leukemia, a type of cancer of the blood and bone marrow, according to the Mayo Clinic. It is commonly referred to as ALL.

Wyatt first started showing signs of ALL in July 2021. He was tired a lot. He was running fevers. In August, he started losing his appetite and experiencing digestive problems. He started getting unusual bruising. He was losing interest in the things that he enjoyed, like taking baths, which turned into a painful experience for him.

At first, doctors didn't seem too concerned about Wyatt's symptoms, Kaylee said. They told her each time that she brought Wyatt in for care that he looked good. He didn't have COVID-19. He didn't have the flu. The doctors couldn't pinpoint anything wrong with him. They would send Wyatt home with instructions to get plenty of rest.

But something kept telling Kaylee that her son was seriously ill. She even had a dream that Wyatt had leukemia.

"I had a weird feeling in my gut that it was some sort of cancer," Kaylee said. "And I don't really know why. Everyone thought I was going crazy. Everyone was like, 'It's probably just a bug.' Or, like, maybe he had COVID because some people have had long-term effects. But I thought it seriously could be leukemia."

The Blevins kept a close eye on Wyatt. Then, in September, Wyatt's symptoms got much worse. He had stopped eating and using the bathroom entirely. He was extremely pale. He would wake up in the night crying trying to rub the pain out of his legs.

The Blevins booked an emergency appointment with their pediatrician. Even then, the doctor thought the culprits were constipation and fatigue, Kaylee said. The doctor gave Wyatt something to help with the constipation and, again, sent the Blevins on their way.

Three days after that visit, Wyatt became violently ill. The Blevins rushed him to the emergency room, where doctors took blood samples.

"They could barely draw blood from his veins because his body almost completely stopped producing red blood cells," Kaylee said.

Wyatt's hemoglobin count, a measure of the protein that carries oxygen in red blood cells, was 2.1; a normal range for a child Wyatt's age should be between 9.5 and 13, according to information on the Mount Sinai website.

"It was critically low. He could've died. They were surprised he was even still conscious," Kaylee said.

Wyatt was airlifted to Ann & Robert H. Lurie Children's Hospital of Chicago. Doctors were concerned that Wyatt could have a form of fast-spreading leukemia, Kaylee said. Wyatt needed multiple blood transfusions immediately to get him back to a healthy level.

Within a few hours, doctors confirmed Wyatt's ALL diagnosis. The Blevins' world collapsed.

"When I found out, I didn't want to be right, but I was like, 'I knew it,'" Kaylee said.

The very next day, Sept. 14, 2021, Wyatt underwent surgery to have a port put into his chest, had a biopsy done on his bone marrow, had fluid pulled out of his spine through a spinal tap, and started steroid treatment and chemotherapy.

Often people will say the treatment can be worse than the cancer itself. For the past 10 months, Wyatt has endured different phases of treatment, including multiple rounds of chemo, spinal taps and a virtual pharmacy of chemo medications to help battle the cancer inside him.

Wyatt was in the hospital just after Thanksgiving and just after Christmas. He turned 2 in December, as he continued to fight his cancer.

Wyatt is currently in remission, but his journey is far from over, Kaylee said. He still has to endure spinal taps. He now takes daily chemo medications at home to help control the cancer. He has good days, and he has bad days.

He will continue to receive chemotherapy treatment until at least 2023, Kaylee said.

And, as the Blevins have learned from their personal experience over the course of the past 10 months back and forth to the hospital for treatment, there are many, many other young children going through the same scenario.

"People don't think that kids get cancer. But, unfortunately, we go to Lurie's now once every four weeks and the waiting room is packed with kids. It's heartbreaking," Kaylee said. "... It's something that people just don't think about, which I really didn't, either, until July of last year."

But Kaylee is trying to turn that heartbreak into something positive. She hopes she can help be a voice for children with cancer and help spread awareness of the extreme hardships it can create for children and their families.

That's how Wyatt the Warrior's Fight was born. It's a Facebook group that was originally started by one of Kaylee's relatives, but is now run by Kaylee.

The group page is full of updates on Wyatt. Not all of the updates are pleasant to read or watch, but Kaylee said it's important to see children in the rough times as they go through treatment to counterbalance the videos that show the brighter side of children getting better.

Wyatt the Warrior's Fight also serves as a resource hub for those seeking more information about cancer in children and how research is funded, or, rather, not funded.

Only about 4 percent of federal cancer funding goes toward childhood cancer, according to the Children's Cancer Research Fund.

Kaylee said that there is ample funding for research of other forms of cancer, and hopes that corporations, organizations and individuals will help step up to contribute more for childhood cancer funding.

"There are trials out there, and stuff like that, but they don't have enough funding for the kids to keep these experiments going. It sucks. It blows my mind," she said.

Kaylee said one of her biggest wishes is that professional sports leagues will get involved by dedicating months, or even just single games, to help raise awareness and contribute funding.

"It just sucks. It makes us parents pissed off because if you could see it, you would change," she said.

Childhood Cancer Awareness Month takes place in September, and one way people can get involved is through the Go Gold for Kids With Cancer campaign, put together by the American Childhood Cancer Organization.

Kaylee has also advocated for other childhood cancer groups, including Alex's Lemonade Stand Foundation, The Anthony Rizzo Foundation, Cal's Angels, Bear Necessities, Project Fire Buddies, A Rae Of Joi and Christmas Without Cancer.

Those interested in donating directly to the Blevins can do so through a GiveSendGo fundraising account by following this link.

Kaylee said she hopes one day to turn Wyatt the Warrior's Fight into a non-profit organization.

"I don't want it to stop when he stops treatment," she said. "It's going to follow him forever, unfortunately. He's got a scar on his chest that will never go away. He's got marks on his back from the multiple spinal taps. He has nightmares from going through it.

"I want to change the cancer world. I want people to see the kids. I'm not trying to say that childhood cancer is more important than all the other cancers, but they should at least be equal. They deserve to be seen."