He Had 100 Surgeries as a Kid—Now He’s a Nurse Helping Patients at the Same Hospital

Dealing with a rare medical condition led Caleb Wolf to question his life, but he credits nurses with saving him and inspiring his future career. 

Not every nurse can say they know what it's like to be a patient on the floor where they now work, but Caleb Wolf certainly can. Diagnosed at just two years old with Chiari malformations and pseudotumor cerebri, conditions that caused serious pain, seizures, cognitive issues, and vision problems, Wolf would go on to have more than 100 surgeries and treatments at Children’s Mercy Kansas City hospital in Missouri. 

Wolf faced enormous challenges throughout his long-term stays as a pediatric patient, but fought, not just for himself, but for other patients like him who were forced to spend their holidays in the hospital. He founded a non-profit that gifted kids with holiday and other special gifts during their hospital stays, and then later, as an adult, he found the ultimate way to give back:

He became a nurse himself and now works as a staff RN at the same hospital where he practically grew up. 

A Rare Beacon of Hope

Wolf tells Nurse.org that his favorite part about his work now as an RN on the pediatric orthopedics floor is seeing the hope and connection that just his presence can offer patients and families. His specific medical condition means that he is an adult who lives with a permanent brain shunt, a medical device that Wolf explains is a rarity.

His exact condition is so rare, in fact, that his survival defies medical explanation. Wolf explained that his condition involves an excess of fluid production in the brain and spinal column, but unlike similar conditions like hydrocephalus, which involves dilation to accommodate the fluid, Wolf's channels remained small, building dangerous pressure up through his brain. 

"My mom was worried and asked the neurosurgeon who was there at the time, 'When should I worry?'" Wolfe remembers. "And he was like,' Well, if it was you, I, or anyone else, you would be dead."

"It just doesn't make scientific sense for me to be alive," he adds. 

But it's that same rarity that offers patients and their families on the floor a reason to hope. "I can say, like I was in this bed, not maybe the specific bed, but I was in this hospital," Wolf points out. "I know exactly what it's like to be your child in this situation. And usually that kind of brings a sense of calm, I think."

Wolf shares that parents have even admitted that they had never met an adult with a shunt before, so seeing Wolf not only surviving, but thriving in his role as their child's nurse is eye-opening. 

"They said it kind of gave them a sense of hope," he adds. 

Giving Back to Get Through

While the mere presence of Wolf today to his patients and families can provide a necessary sense of hope, Wolf shares with Nurse.org that his own journey was not always as hopeful. After a severe allergic reaction near Thanksgiving left him near death around the age of 11, Wolf questioned why this was happening to him.  

"I said I'd rather be dead or cured by now," Wolf remembers. "I didn't care which. I just wanted it to be over. I essentially wanted to die when I was 11 and go to heaven, because I was just tired of it."

It's heartwrenching to think of a child who just wanted to feel better, and Wolf found the strength to continue his journey through a somewhat unexpected place: giving back to other kids facing medical challenges.

At only the age of 12, Wolf and his friend Reagan started a group called Henson's Heroes, which supplies toys, gifts, holiday meals, and other items of enjoyment, comfort, and need to patients and their families. What started with a competition between friends to see who could get the most toys donated (spoiler: they filled two entire school buses!) quickly became a community tradition. 

"I was like, 'Okay, I get it now,'" Wolf says. "I kind of understand what's going on here. And that gave me the boost to kind of see, kind of the light at the end of the tunnel."

Today, Henson's Heroes lives on through the hospital's annual Snowflake Shoppe, which allows parents and caregivers of inpatient and dialysis families to "shop" for gifts—donated by the community— without ever needing to leave the hospital. Community members or individuals can still donate online to continue Wolf's efforts with monetary donations that can be directed to the Snowflake Shoppe. 

The Next Step

As Wolf grew and his health stabilized through ongoing treatments, he set his sights on the next steps for his future. Although he initially dreamed of becoming a neurosurgeon, by his senior year of high school, he realized nursing was the answer. 

"It was the nurses who were with me in the trenches 24/7," he says. "They're the ones who made every day as special as possible. They're the ones that saved my life."

Wolf adds that all of his providers were "amazing," but explains that while the doctors were the ones who performed the surgeries that saved him medically, it was the nurses who saved him mentally. 

"If it weren't for them, I wouldn't be here," he says simply. 

He points to the many nurses who cared for him, from the night nurse who stood by his side and talked to him late at night when he was 11 and wanted his life to end ("He was a rock for me to stand on or lean on in a time of need," Wolf remembers) to a male nurse who came in on his day off to play video games with him to the "countless" nurse who engaged in saline syringe water fights with him. 

When Wolf graduated from high school, several of his nurses even pitched in and bought him an engraved stethoscope, which he still has to this day. 

Today, Wolf can proudly wear that stethoscope as an official Registered Nurse at Children's Mercy, having graduated from Missouri Southern State University. He tells Nurse.org that becoming a nurse has "been everything and more than I could have hoped for." 

'I Made It'

He works full-time on the night shift, and while he had some concerns about the impact of staying up all night may have on epilepsy, he is doing well and feeling positive about returning to the hospital as a provider instead of a patient. 

"When I became a nurse and started working there, it just kind of hit me," Wolf shares. "I walked out of a patient room, and I was like, 'I made it.' I did it, you know, through the grace of God, I made it. And we're here, and I just can't believe it, and it's been amazing."

Recently married, Wolf is enjoying time with his wife and their pets, a cat and a dog, as well as looking forward to his future. For now, he is content with his work as an RN in the hospital, but someday, he says he may look into becoming a legal nurse consultant. When he's not working, he says he enjoys "stereotypically nerdy guy" hobbies, pointing to things like building Legos, tabletop role-playing games, and playing video games. 

But most of all, Wolf is focused on his role as a nurse, a full-circle moment in what has been a long and difficult journey. He sees his work as giving the sort of hope he once so desperately needed: 

"It's being able to do what I am doing and help parents see the light at the end of the tunnel, to have hope and think, 'You know, if he can get through it and become a functioning adult on his own as a nurse, then maybe my kid can too.'"

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