Had he been born 50 years ago, leukemia likely would have killed Levi Johnson before his fourth birthday, parents Trevor and Jessie Johnson said.

“Back then, leukemia was a death sentence” for young children, Trevor said.

In the decades since, scientific research, drug trials and new treatments have changed that outlook. According to Levi’s oncological team at Advocate Children’s Hospital in Park Ridge, even a few years ago Levi’s chemotherapy treatment would span 3½ years, not the 2½ he faces now.

Trevor and Jessie hope that a fundraiser in Levi’s name can help future childhood cancer patients and their families. Levi’s Lemonade Stand is set for June 27 and 28 at Stevens Park in downtown Richmond during Round-Up Days.

“We have benefited from the research; they’ve come so far,” Trevor said. “We hope the money raised for research means that a kid diagnosed with leukemia five years from now only has to do chemotherapy for two years, or a year. We hope it helps future people who have to deal with this.”

Their lives have completely changed since Sept. 3, when Levi’s acute lymphoblastic leukemia was diagnosed.

It was late last summer when Levi was on a trampoline with his three older sisters.

“He started crying that he hurt his leg, that is sisters were jumping too high,” Trevor said.

Levi had a limp, but they figured it was a pulled muscle. But then he complained of being cold, had little appetite and seemed to them to be going through a phase.

Then Jessie – who was a nurse for 13 years and now is a photographer – saw red dots on his legs one morning a few weeks later. She set a doctor’s appointment with his pediatrician for the next day.

That night, as they watched TV at home, a call came from the hospital. It was after 10 p.m., so they knew it was bad news.

The doctor, whose name they did not recognize, said Levi needed to go to the emergency room - immediately. The doctor gave them Levi’s white and red blood cell counts, and platelet counts, but would not say what they thought was wrong.

Jessie had an idea what the numbers meant, but Trevor needed more information. As they found someone to come stay with their daughters overnight, he asked AI what those numbers meant for a 3-year-old boy. Chat GTP told him: “‘I am sorry to be the one to tell you this, but your son has leukemia,’” Trevor said.

They drove to Advocate Lutheran General Hospital in Park Ridge, where the children’s hospital is located, getting there about midnight. While a bone marrow biopsy later in the day was needed to confirm the diagnosis, a doctor told them at 3 a.m. what they knew was coming.

“He said he had really bad news, and your lives are about to change,” Trevor said. Chemotherapy was started almost immediately.

It has not been an easy road for Levi. The pokes, the surgeries to put in his IV port, the chemo medications injected into his spinal column and the pills he takes at home can overwhelm the now 4-year-old.

“He cried for every visit,” Jessie said. “We don’t even tell him until day of his appointments,” hoping to alleviate the stress and worry.

But if he makes it through the 2½ years of treatment, “he will probably be OK,” Trevor said.

For the 50-some childhood leukemia patients and their families treated at Advocate Children’s Hospital each year – the ones the Johnson family has gotten to know – their stories are eerily similar.

“They have no idea what is coming,” Trevor said.

That is what they hope to alleviate for future families by raising funds now.

They are working with national organization Alex’s Lemonade Stand. The nonprofit helps families set up lemonade stands across the country as fundraisers for childhood cancer research.

“They provided a starter kit and a lemonade stand coach,” Jessie said.

Trevor called the village of Richmond to find out what kind of permits they’d need. It was Richmond officials who suggested they host it during Round-Up Days to maximize attention. Jewel Foods donated the lemonade, and McDonald’s donated the cups.

The lemonade stand will be open from 11 a.m. to 11 p.m. June 27, and from 11 a.m. to 5 p.m. June 28 at Stevens Park, 10314 Main St., Richmond. There is no set price per cup.

Those who would like to donate but who cannot be at the event can learn more at the Levi’s Lemonade Stand website, alexslemonade.org/2026/levis-lemonade-stand.