When Levi was diagnosed with leukemia in 2022, his mother, Hannah, began to share the roller coaster ride that is a childhood cancer diagnosis. Her writing style is compelling because of its authenticity and truthfulness, and she finds it helpful to release some of the emotions through words.
Levi had a very rough first year of treatment. He was sick most of the time, suffered from neuropathy, and one of his medications gave him seizures. His treatment will last for three and a half years and should be complete in August 2025.
Here is a brief look into his journey through his mother’s heart. Hannah is mindful to celebrate milestones, including his kindergarten graduation:
I’m so proud of him.
All parents are proud of their kids.
But with him, there’s a deep, immeasurable amount of beaming pride.
He’s fought and is still fighting for his life.
He’s closed huge gaps in his “academics.”
He’s covered and conquered pre-k and kindergarten skills in a year.
He’s pushed himself even though not feeling good.
He’s never, ever once quit.
He’s so strong. And he’s one of the best people I know. Being his mama is my greatest pride.
A few weeks later she shared a glimpse into her own feelings that many parents can relate to:
I’m tired. Deep in my bones, deliriously tired from this journey. I’m tired of watching my child suffer with indescribable pain and nothing that helps him. I’m so tired of fighting to get him help. I’m tired of this being our life. I’m so tired of very, very few people understanding. I don’t know how I can do this for another year. But as he continues to fight, we will stand by him each step of the way.
Then she shared a glimpse of what is in Levi’s heart and mind on a visit to celebrate the end of treatment for a friend:
We walked into the hospital and Levi began having what I can only explain as a panic attack. He clung to me and wouldn’t let go. He was terrified to go back to the 5th floor where he was diagnosed. He kept saying, “Mama, don’t you remember how bad it is there? It’s my worst nightmare. Mama I already lived my worst nightmare.”
After leaving the hospital, he asked, “Mama, what if my cancer comes back?”
A day that was so exciting was also so heavy. I don’t have the answers to his question. I can’t tell him the cancer won’t come back. I can’t tell him everyone will be okay. It’s heartbreaking, and it’s not fair.
In dealing with all of the emotions inherent in this world of childhood cancer, Hannah found herself angry, which isn’t typical for her. CURE helped to connect her to a therapist who listened to her concerns and helped her understand that it is okay to feel angry, as long as she doesn’t park herself there.
“CURE’s Counseling Program has been a huge blessing for me,” Hannah said. “Because Levi became stoic and didn’t want to tell us when he was in pain, he began seeing a counselor also and learned that he doesn’t have to wait until the pain is at a high level before telling us.”
Levi is in the homestretch of his treatment now. He’s smiling more and loves to go swimming whenever he can. His strength and perseverance make an impression on anyone lucky enough to meet him or read his mother’s writing.
When we do these things, we have the opportunity to move from a quick check-in about school that involves the parent looking at the calendar on their phone to check the family’s itinerary and the teenager answering quickly before going to their room to a more intentional interaction that includes eye contact, lightheartedness in nonverbal communication and shared laughter about an event of the day, and two family members ending the conversation hopefully feeling more connected to one another. If a conversation is not as pleasant in subject matter, this skill still allows for connection via expressing understanding of one another’s points, even if full agreement cannot be reached. While many of us know the importance of aspects of the GIVE skill, intentionally utilizing the skill as a whole grounds us in the goal of connection with our teenager and provides us with a framework of how to do so.
“My world just dropped with those three letters,” Heather said. “I was absolutely crushed.”
Kelson faced significant health challenges from the day he was born. He began having seizures at four weeks old, which forced him to spend twelve weeks in neonatal intensive care. At six months old, he was diagnosed with a form of epilepsy. That was followed by scoliosis, neuropathy, hydrocephalus, and a host of other medical complications. Poor Kelson couldn’t get a break.
Seven Days of Kelson’s Kindness
“You learn very quickly when you start treatment that you can’t ask questions about the future,” shared Ella’s mother, Allison. “Her doctors didn’t know if she would ever be able to eat or have a normal life. She didn’t learn to eat until she was 18 months old, and her mouth muscles didn’t develop. She had to have intense speech therapy until she was three years old. But she is a picture of resiliency and is now ahead of where she should be developmentally.”
