The Hidden Challenges of Survival: Robbie’s Story

A Childhood Changed by a Devastating Diagnosis

In 1999, nine-year-old Robbie was an active, energetic kid, who loved iceless hockey and wrestling. Like many children his age, he was always on the move, but his mother, Cathi, noticed something wasn’t quite right. Doctors initially diagnosed him with ADHD, but over time, his symptoms became more concerning. Following a wrestling meet where he barely ate and later began vomiting, Cathi took him to his pediatrician, who attributed his issues to sinus problems. Unsatisfied with this explanation, Cathi pushed for more answers. The doctor then recommended a CT scan at a local hospital.

The results were alarming. Cathi and her husband Rob Sr were told that Robbie needed to be transferred immediately to a hospital an hour away, where a brain surgeon would be waiting. An MRI there revealed the true cause of his symptoms—it wasn’t ADHD; Robbie had medulloblastoma, an aggressive brain tumor, and cancer had already spread throughout his brain and down his spine. He required immediate surgery.

A Life-Saving Surgery and a New Reality

“They told us he might not survive the operation,” Cathi recalls. “We called our family and asked them to come to the hospital to say their goodbyes. But after seven long hours of surgery, Robbie pulled through.”

What Robbie’s parents didn’t know at the time was that Robbie’s journey with cancer and its aftermath was just beginning. Following the surgery, he spent two weeks in intensive care before undergoing aggressive chemotherapy and radiation. High doses of each were necessary to attack the cancer, but they also caused lasting damage. The doctors warned that treatment could lead to long-term side effects, but at the time, the focus was simply on ensuring Robbie’s survival.

Now, at 35, Robbie lives with the consequences of those treatments. “I have a lot of health problems, like loss of hearing, loss of vision, and my body is just pretty much wiped out,” he says. “I go through depression, but then I bounce back. It’s kind of hard to describe.”

The toll on his body has been immense. Along with impacts on his hearing and vision, he also faces balance and memory issues and struggles with depression due to the lasting physical limitations caused by his aggressive tumor treatments. Seizures, which began about three years ago, have added another hurdle, sometimes occurring multiple times a day. While doctors at Mayo Clinic are working to manage them, the seizures remain unpredictable, and until they are fully under control, Robbie is unable to drive.

More recently, Robbie suffered a brain stroke. “He’s had so much radiation that his body is just breaking down,” Cathi says. “It feels like every time we climb up the mountain, we get knocked back down.”

Finding the Joy 

Despite the hardships, Robbie finds joy in his work and his hobbies. He has worked for a total of 15 years at two different stores, and he loves his job. “His managers and co-workers are amazing,” Cathi says. “He never wants to miss a day.”

When he’s not working, Robbie immerses himself in building large, intricate Lego sets, especially Star Wars-themed ones. “I do love Legos,” he says. “It keeps me busy. Puzzles also help keep my brain active.”

Adds Cathi, “He has every Lego set you could imagine. If you saw his room you’d be like OMG! His room is covered with Legos. So that keeps him busy. And his work is amazing!”

The Emotional Toll of Survival

But the emotional struggles remain. “I try to stay positive, but sometimes it’s so hard,” he admits. “I try to be happy when I know I’m not.”

“He would like to have a normal life and just wants to be like everybody else,” Cathi says. “And he gets really down that he’s not.”

Robbie and his mom recently reached out to the Pediatric Brain Tumor Foundation (PBTF) to explore support options. The long-term effects of brain tumors and their treatments are often misunderstood. Many assume that once treatment ends, life returns to normal, but for survivors like Robbie, the journey never truly ends.

A Community That Understands

PBTF Family Support Manager Jenn Kelley suggested Robbie join one of PBTF’s virtual support groups for adult survivors. Groups meet over Zoom every other week for eight sessions. “It’s a space where survivors can connect with others who truly understand what they are going through,” Jenn explains.

Robbie is enthusiastic about giving it a try. “Okay, yeah. I think that would be a good idea.”

For Cathi, the group offers hope—not just for Robbie, but for herself as well. “I think it would be helpful for both of us. Because it feels like every day there’s something new to overcome. It feels like it never stops.”

Robbie’s journey highlights the reality childhood brain tumor survivors often face—that surviving the disease is just the first step. The lifelong physical and emotional challenges that follow can be overwhelming. Yet, through work, hobbies, and the support of loved ones, Robbie continues to push forward.

Commemorating the Day That Changed Everything

Each year, on the anniversary of his diagnosis—which happens to be St. Patrick’s Day—Robbie, his mom, and his dad mark the day with a nice dinner and a shamrock shake, something he missed out on the day he was diagnosed. “We acknowledge the day this way because that’s what we did the year after his diagnosis to make up for him missing those things the year before. Now it’s a tradition. But we actually sort of hate St. Patrick’s Day,” Cathi admits.

Robbie hopes that by sharing his story, more people will understand the long-term impact of brain tumors and the importance of ongoing support. He’s even writing a book about his experiences. “I decided to write something to try to help other people going through tough times get through life.”

How PBTF Can Help

For survivors like Robbie, the challenges don’t end when treatment does. Yet through care, understanding, and connection, including assistance from organizations like the Pediatric Brain Tumor Foundation, there is hope.

If you or a family you know is facing a pediatric brain tumor diagnosis, PBTF is here to help. Whether you need emotional, financial, or medical support, we offer valuable resources and a compassionate community that understands the journey—from diagnosis through treatment and beyond.

Visit curethekids.org/support-for-families for a wealth of helpful information. You can also connect with our Patient Family Advocacy team by filling out this brief form or emailing [email protected] anytime.