A Magazine from Akron Children's
Sometimes life asks us to make decisions without knowing what the outcome will be. And often those steps through the unknown — despite the trials, the bumps and the fear — can catapult us into something just as beautiful as it is unexpected.
Rocco Jr. with his care team, Dr. Kevin Watson, gastroenterologist (left); Morgan Houser, nurse clinician; and Dr. Justin Huntington, division director of pediatric surgery.
Crystal Brodzenski and Rocco Ross Sr. began fostering in 2018, but most of their placements had been short term. So, when they got the call about a 4-year-old boy in need of a place to stay in early 2020, they knew opening their home to him meant embracing the unknown.
“We knew nothing about him other than he was given to us by Summit County Children’s Services,” said Rocco Sr.
The pandemic hit just weeks later, and it was clear the boy would be with them for the foreseeable future. But their love for him was only growing stronger, and he had quickly become a natural and essential part of their family. Two years later, they officially adopted him and named him Rocco Jr. after his adoptive father.
Rocco is a Nepalese immigrant. Despite Crystal and Rocco Sr.’s certainty that he was meant to be a part of their family, there were many unknowns around his adoption — including his family health history. So, when he started having health complications, they had no additional context to explain them.
Rocco always had low energy and a pale complexion, so it wasn’t until an Akron Children’s nurse practitioner noticed a heart murmur that anything seemed out of the ordinary. He was referred to a cardiologist who ordered some routine blood work.
Later that night, Crystal received a terrifying phone call.
Rocco’s hemoglobin levels were so low he was at risk of going into cardiac arrest at any moment. They had to get him to the hospital immediately — without causing him to panic. “It was hard to navigate telling him what was going on without scaring him,” said Crystal.
Rocco spent the weekend at the hospital receiving blood transfusions. While there, it was discovered that he was not only severely anemic, but he also had a significant amount of blood in his stool. The family met Kevin Watson, MD, FAAP, gastroenterologist, who worked with Rocco’s hematologist to manage his symptoms. After he was stabilized, Dr. Watson then performed a colonoscopy.
“It wasn’t until we did his colonoscopy that we discovered the underlying cause of his issue,” said Dr. Watson.
He and his team found thousands of polyps in Rocco’s colon. The extreme volume of them made biopsies impossible, which led Dr. Watson to diagnose Rocco with “familial adenomatous polyposis,” or FAP for short. It is a rare genetic condition that causes hundreds to thousands of precancerous polyps to form in the colon and rectum. If untreated, it leads to a nearly 100% risk of colorectal cancer.
According to Dr. Watson, this diagnosis is very rare, especially in kids. And without his family health history, FAP was not even a consideration until the results of Rocco’s colonoscopy proved otherwise.
Alongside Dr. Watson and his team, Rocco and his family immediately began creating a plan. He would need to have his colon and rectum removed, receive a temporary ileostomy bag to collect digestive waste and undergo reconstructive surgery.
They met with Justin Huntington, MD, division director of pediatric surgery, who told Crystal and Rocco Sr. that the best thing to do for Rocco’s young body was to divide the procedure into three separate surgeries over several months. They began in February 2024, when Dr. Huntington removed his colon and created an ileostomy.
“Learning the ileostomy bag was difficult,” said Crystal. But their nurse, Morgan Houser, helped them through every step of the way. “After that first surgery, we worked with her a lot. She must be the most patient person in the hospital. We felt so supported.”
Rocco’s second surgery was that spring when Dr. Huntington and his team removed Rocco’s rectum and created a J-pouch out of small intestine to act as a reservoir for stool. And his third and final surgery was to reverse the ileostomy bag.
FAP is a lifelong condition, so he will undergo scopes at least once a year for the rest of his life. Rocco still works with the gastroenterology team, as well as neurology and genetics to prevent any future polyps growing anywhere else in his body.
“Our biggest question after all of this was, ‘Will he have a good quality of life?’” Crystal reflected. But after seeing his high-energy personality return, as well as his complexion, she is confident he will. “He has to drink a lot more water and be mindful of what he can and can’t eat, but he can have a normal life. He gets to play soccer, which he loves, and go to school.”
But more than anything, Rocco’s parents are sure he will have a great life because of his resilience and ability to handle his condition. “He’s been a champ,” said Rocco Sr. He went on to describe how Rocco Jr. uses his experience to help educate kids at his school about the digestive system, and he even hopes to become a doctor or surgeon one day.
“He always says, ‘If we meet someone else with FAP, I can help them,’” said Rocco Sr.
Rocco Jr. with his parents, Rocco Sr. and Crystal.
Now Rocco is 10, and he doesn’t shy away from the realities of his condition. “One of the difficult things we’ve had to talk to him about is that if he has kids someday, there is a big chance they could have FAP, too,” Crystal said.
But Rocco isn’t afraid. He knows firsthand that it’s possible to not only live with FAP, but to thrive.
And that is key to his growth, said Dr. Watson. “Rocco and his family have been so positive throughout this entire process. The power of positive thinking and having gratitude really does make a big difference. That mentality has served Rocco and knowing that his parents have been so supportive carries on with him, empowering him to handle almost anything thrown at him.”
Crystal and Rocco Sr. couldn’t have known what was in store for them when they first met him six years ago. And through all the trials of navigating a mysterious and severe health condition, they couldn’t be more grateful to raise the bright, funny and energetic boy that Rocco is today.
From inspiring stories, to medical miracles, the More childhood, pleaseTM magazine will make you appreciate those precious 6,574 days of childhood.
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