In March 2019, 21-month-old Lukas started behaving differently.
“His attitude changed, he wasn’t eating normally, and he became very clingy,” shared Nicole, his mom. “At first, we chalked it up to normal toddler behavior, but a few days later, he also developed red spots on his torso and neck that didn’t go away.”
The red spots were petechiae, tiny round spots due to bleeding under the skin. Nicole called her mother, who’s a nurse, and described Lukas’s symptoms. She told Nicole to take Lukas to the doctor.
Nicole and her husband, Jeff, took their son to Advocate Children’s Hospital – Park Ridge. Lukas had blood work done, and a short time later, they got a phone call saying the tests had come back positive for leukemia.
“We raced back to the hospital, where more tests were done throughout the night. Dr. Caitlin Agrawal came into our room the next day and confirmed it was leukemia. I just lost it,” recalled Nicole. “I ran out of the room and fell to the ground, crying. It was like my world was crashing down on me.”
Nicole and Jeff experienced a whirlwind of emotions – they were scared, nervous and worried for their young son.
“We also felt naïve because we didn’t understand what was happening. It was terrifying.”
One day, Nicole was feeling particularly anxious and had a panic attack. A young pediatric cancer patient happened to be walking out of a patient room with her mother. She saw how distressed Nicole was and came over to talk to her.
“She told me that treatment really wasn’t that bad and that she was almost finished with hers. She hugged me, and then her mom came over and talked to me about her daughter’s journey,” she said. “Hearing from another mom who was dealing with a similar situation gave me hope.”
Lukas stayed in the hospital for 12 days while he had his first rounds of chemotherapy. Nicole, a teacher, remembered that one of her kindergarten students had been treated for leukemia years ago.
“I reached out to the boy’s mother, and she walked me through every step, telling me what I could expect in the days, months and years to come. She had already walked this journey, and her son is now thriving. I finally started to feel calmer about Lukas’s diagnosis.”
For the next nine months, Lukas had weekly cancer treatments.
“He had chemotherapy, spinal taps and blood work. He also had oral chemotherapy plus a steroid. In the beginning, the swelling and weight gain were so bad that he couldn’t walk,” shared Nicole. “It’s heartbreaking to see your child go through all these changes. They have no idea what’s happening and they’re so helpless.”
When COVID-19 hit, Nicole felt isolated. She started a Facebook group for parents of children fighting cancer. She even started her own foundation, Childhood Cancer Warriors, to provide support and resources for families going through cancer.
“Our mission is to support families from the point of diagnosis and beyond. There’s no way we could have gone through Lukas’s cancer journey without a support system of family and friends.”
Moving forward
Lukas was in his maintenance phase of treatment for the next two and a half years. The day after his fifth birthday, he took his last oral chemotherapy pill. On June 3, 2022, he got to ring the bell at Advocate Children’s Hospital – Park Ridge, signaling the end of his long treatment. Nicole and Jeff are extremely grateful to the team at Advocate Children’s Hospital for saving their son’s life.
“They are the most amazing people we’ve ever met. They are angels from heaven, and if it wasn’t for them, Lukas would not be here. They encouraged us, supported us, hugged us, gave us advice, and listened to our concerns every step of the way,” said Nicole. “It was just like they were a part of our family. They made us feel like we could do this.”
Today, Lukas is an active, thriving kindergartener.
“He says he learned to be strong and brave because of his cancer journey. He was always excited to pick a toy from the toy chest after a procedure because it meant he was extra brave. For us, this experience has highlighted how every day is precious and meaningful. I’m looking forward to making more memories with my family and watching Lukas grow and live the life he deserves.”
How you can help
Advocate Children’s Hospital is part of Advocate Aurora Health, a not-for-profit organization. Many of our programs and services, including pediatric cancer programs, are supported by the generosity of donors. Please consider making a gift today and helping children like Lukas and their families. For more information, please contact Amy Valenzio, Development Manager.