Ryan: From First Breath to Cancer Survivor

From before he was born, Ryan was a Children’s Hospital Colorado patient.

Ryan was one of the first babies born at our Colorado Fetal Care Center. At the time, his mom Jennifer’s pregnancy was considered high-risk, requiring expert care. Before birth, Ryan was diagnosed with gastroschisis — a birth defect that causes the intestines and other organs to come through a hole in the abdominal wall and sit on the outside of the body. While many infants need surgery to fix his condition, after his birth, Ryan’s surgeon was able to give him a pain medication to relax his body and then manually re-insert his intestines and bladder. After 23 days in the NICU, Ryan went home and grew into a happy and active toddler. But that wasn’t where Ryan’s care ended.

The first signs something was wrong

When Ryan was 4 years old, he began experiencing strange illnesses that doctors couldn’t diagnose. His symptoms started with a stomachache and leg pain and progressed to flu-like symptoms and double ear infections. This lasted for several months, and nothing seemed to help. Jennifer also noticed on a trip to the East Coast that Ryan had a few bad nosebleeds and bruises lasting much longer than they should. At the time, his family didn’t know those symptoms were part of a larger condition.

After the trip, Jennifer noticed that Ryan was especially lethargic and wondered if the ear infections were back. At urgent care, his temperature hit 104 degrees, and he was immediately transferred to the Children’s Colorado emergency department. Our experts ran every test possible to rule out pneumonia, flu and strep throat, but everything came back negative. In the early morning hours, they decided to run a complete blood count test to learn more about the different cells in Ryan’s blood. While Ryan’s dad, Jeremy, took their other son home, Jennifer waited to get a diagnosis. Finally, the on-call Center for Cancer and Blood Disorders doctor broke the news that Ryan might have leukemia.

“I was sitting there by myself on the phone with my husband bawling my eyes out,” Jennifer says. “As a parent, finding out your child has cancer and there’s no way to fix it is the worst feeling in the world.”

Staying strong during leukemia treatment

Ryan was admitted for three days, during which he had surgery to put a port in his chest and received several infusions. He then went home to continue treatment. For eight months, Ryan did well with chemotherapy but struggled with accessing his port and steroid injections. His care team took extra care to help Ryan address these challenges, including using medications and distractions to help his anxiety and make de-accessing his port easier. These adjustments were especially helpful on days like Halloween when Ryan didn’t want to get treatment. Jennifer fondly remembers his doctors and nurses coordinating their costumes to match his. As he trick-or-treated through the halls dressed as the ladybug from James and the Giant Peach, the rest of his team followed along as different types of insects.

“Children’s Colorado does a tremendous job at making holidays special — especially Halloween,” Jennifer says.

Ryan’s diagnosis affected him in every way — physically, emotionally and mentally — Jennifer recalls. But she knew how important it was to ensure Ryan, her other son and their entire family kept going. That included keeping Ryan in school, even during the COVID-19 pandemic, to provide some sense of normalcy.

“I had to figure out how to let other people know that my child needed other accommodations without labeling him weird or special,” Jennifer says. Ryan’s school took extra care to address his specific needs and give him a space to grow.

Life in remission

After months of treatment, Ryan hit remission. And once he was in the maintenance phase of care, his family was able to spend less time at the hospital. But once things finally slowed down, the reality of the situation they had just gone through set in. Jennifer found that supporting other families through cancer helped her cope.

From his birth to his birth defect and surviving cancer, Ryan found a home at Children’s Colorado — somewhere he can get care across his lifetime, no matter the diagnosis. Today, Ryan is 12 and thriving. He’s ready to start seventh grade and loves participating in theatre, creating art and playing volleyball. With his family and care team by his side, Ryan can do anything.