My son, Hunter, is a survivor of pediatric cancer, B-cell acute lymphoblastic leukemia (ALL).
The early days were a blur of tears, fear, medical terminology, hospital stays, tests, and endless blood draws. As a parent, nothing can prepare you for watching your child face something so much bigger than anything they should ever have to experience or carry. I wished I could protect him from every poke, every procedure, and every bit of pain and fear he endured, but I quickly learned that some battles cannot be fought for our children. Instead, we fight by advocating for them, finding ways to ease their fears, and standing beside them and their doctors every step of the way.
This experience changed our entire family – our routines, our priorities, and our understanding of what truly matters.
Hunter was diagnosed with ALL in March 2023 and achieved remission. While we were grateful that his cancer responded to treatment, the journey became far more complicated. During and after treatment, he faced numerous medical challenges, including the beginning of avascular necrosis in his hips, brain and lung lesions, seizures, blood and platelet transfusions, anaphylactic reactions to chemotherapy, and, ultimately, a diagnosis of hemophagocytic lymphohistiocytosis (HLH) in September 2024.
His medical team believes that the intense immune disruption caused by cancer treatment triggered HLH, a rare and life-threatening inflammatory condition. Since then, he has required ongoing care, including steroids, Gamifant® infusions, immunomodulating medications, frequent imaging, and consultations with specialists across multiple institutions.
Although HLH has brought new complications, his care team has worked tirelessly to control the disease, monitor his brain and lung lesions, and create a long-term plan focused on stability, close surveillance, and helping him return to enjoying his childhood.
Hunter rang the bell to complete cancer treatment in May 2025 and just recently had his port removed in June of this year. He has been feeling extremely well, and we anticipate he will return to school in September. He has been homeschooled for the majority of his time since Kindergarten because of his medical journey.
As my son has grown, we have continued to navigate medical appointments, ongoing medications, and the emotional impact of everything he has experienced. Childhood cancer will forever be part of our story. It has shaped how we view the world, celebrate milestones, and define strength in even the smallest warriors.
Throughout this experience, I learned more about myself and what I am capable of as a mother. I continued to work full-time while taking intermittent leaves during his most difficult hospital admissions. I learned how to hold a smile on my face while my heart was breaking, simply to ease my child's fears. I have had to hold my son down with doctors to help administer care for what he needs while fighting tears and my heart screaming to make it stop, but knowing we're doing what's best for him. I sat in on rounds with doctors during our hospital stays to better understand what was happening to my son's body so I could advocate for him and make informed decisions about his care.
Perhaps one of the most defining moments of this journey was sleeping on a hospital couch while nine months pregnant, determined to remain by Hunter's side while preparing to bring his little brother into the world. No matter how exhausted, scared, or overwhelmed I felt, I knew my son needed me there.
This journey has tested our family in ways we never could have imagined, but it has also shown us the depth of our resilience, the strength found in hope, and the extraordinary courage of a child who continues to inspire everyone around him.
Hunter is a huge Halloween advocate, and for the last two years, our family has created a spooky display to celebrate his favorite holiday and raise funds for childhood cancer to give back to organizations like Blood Cancer United that have helped us during our difficult moments. Post-hospital stay in September, when he was diagnosed with HLH, his first stop was a Spirit Halloween store to shop for new items for his Halloween tent.
Karissa
Family member, caregiver, advocate
