Community Corner
Mother Honors Her Late Son by Creating a Foundation in His Name
With Caleb's Crusaders, a former Frankfort resident is raising awareness of a rare disease that killed her 4-year-old boy.
In February 2010, Caleb Tokarski, 3, was diagnosed the common flu and an ear infection.
A week later, however, Caleb was at Children’s Memorial Hospital in Chicago fighting for his life. The flu wasn't the flu. It turned out to be hemophagocytic lymphohistiocytosis or HLH.
But the diagnosis came too late.
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After spending 52 consecutive days in the hospital with his mother, Amanda Tokarski, by his side, Caleb died, six days after his fourth birthday.
In September, Tokarski a former Frankfort resident who currently lives in Manteno, started a foundation, Caleb’s Crusaders. She wants to raise awareness for parents and pediatricians so other afflicted children can have a happier ending.
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“There are few other foundations for HLH,” Tokarski said. “People need to be aware of this disease because it mimics other childhood diseases. Doctors need to check for it if there are multiple symptoms. It can attack the body very quickly if it is not treated in time.”
According to the Centers for Disease Control website, HLH is a rare life-threatening syndrome that occurs most commonly in children. It can be genetic, associated with malignant or autoimmune disorders or caused by a virus. Symptoms can include fever, jaundice, low-blood counts and spleen enlargement.
Because Caleb had never really been ill, Tokarski took Caleb to the doctor when he began vomiting and stopped retaining fluids. The doctor said “flu” and gave Caleb a shot to control the vomiting. It worked for a day, so Tokarski brought Caleb back.
The doctor repeated the shot, examined Caleb’s ears and diagnosed an ear infection. This puzzled Tokarski because Caleb’s ears did not hurt. By the end of the week, Caleb’s condition had deteriorated, and he was admitted to St. James Hospital in Chicago Heights.
“After they did a couple of blood tests, the pediatrician came in and said, ‘The cancer team from Children’s Memorial is coming to get Caleb. They think he needs a blood transfusion,’ ” Tokarski said.
Doctors told Tokarski that Caleb faced two alternatives: He either needed a liver transplant or needed to be treated for HLH. It was the latter.
The next day Caleb’s lungs were so bad doctors induced a coma and placed him on a high-frequency ventilator. The 4-year-old never fully awakened, even after he had surgery for bowel perforation.
“If I squeezed his hand, he’d squeeze back,” Tokarski said. “If I tickled his feet, he’d curl his toes.”
After his death, Tokarski, who lost her job while Caleb was sick, visited her parents in Arizona and contemplated life. That’s when Tokarski knew she had to fight for other children like Caleb.
“I have to focus on the positive,” she said. “As time goes on, it gets easier, but nothing will ever be the same. He was a very wonderful little boy, so I try to do something in his honor every day.”
On June 5, Caleb's Crusaders Foundation will host a launch picnic-BBQ in Frankfort. The foundation is currently seeking donations for raffle items and suggestions to make the event successful. Contact Tokarski at info@calebscrusaders.com.
