Kid Captain Beau Byers thriving after rare cancer diagnosis
When severe pain led to the discovery of a tumor in the Swisher, Iowa, boy's bladder, a team at Stead Family Children's Hospital guided his treatment and recovery.
Beau Byers’ first stomachache came and went. When the pain returned a couple of weeks later, it was so intense that his parents took him to a doctor.
Beau had recently turned 3 and started at a new daycare.
“He was my healthiest baby,” says his mother, Laura, who has three children with her husband, Nate. “He was born right on time, a big, normal baby.”
The doctor thought Beau was constipated and that a high-fiber diet and medication would help. But the pain only worsened, eventually becoming so severe that Beau would run in circles, screaming.
His parents sought help from other local health care providers, concerned that he might have appendicitis, but no one could offer a diagnosis.
“As a parent, you want to protect your child, and I didn’t know what to do,” Laura says, recalling that she broke down and cried when it seemed no one could help. “It was four or five weeks until we had any real answers.”
Diagnosis at Stead Family Children's Hospital
Those answers came after she took Beau to see Tracy Shaw, MD, a pediatrician at University of Iowa Health Care Stead Family Children’s Hospital. Laura’s sister-in-law, who took her own children to Shaw, had recommended her. Shaw ordered an ultrasound right away.
“Beau was eerily calm for the ultrasound,” Laura recalls. “That’s when I first started to get an inkling that this was more serious than what we thought.”
The radiologist came back with an image of a white mass “the size of a softball in a 3-year-old’s bladder,” Laura says. “You don’t think ‘cancer’ when you have something like this. You think ‘stomach bug'." They then met with pediatric urologist Gina Lockwood, MD, who explained that the mass was a tumor and likely was embryonal rhabdomyosarcoma, a soft-tissue cancer that originates from embryonic skeletal muscle tissue.
“It’s a memory I’ll never forget,” Laura says. “Nate started crying and I sat there in shock.”
An estimated 350 new pediatric cases of embryonal rhabdomyosarcoma occur each year, or just four cases per 1 million children.
Surgery followed by weeks of chemotherapy
Beau was admitted that night to Stead Family Children's Hospital.
“We spent a lot of time with Dr. Lockwood, who assured us that this was a type of cancer that kids heal from and did her best to look another mom in the eye and tell me that my baby would be OK,” Laura says.
The next morning, Beau had surgery to remove the tumor. He also had a CT scan to determine how far the cancer had spread.
The surgery removed most of the mass, but removing the origin of the tumor — at the base of his bladder — would have caused problems with urinary function.
“Dr. Lockwood was patient and so open and generous with her time. She answered every question we had, and I am so thankful she was our first line of defense in this fight,” Laura says. “The good news was that the cancer had only spread to the two lymph nodes outside of his bladder. This is when I broke down and cried. I knew enough about metastasis and how this could have been much, much worse.”
After surgery, Beau had a port placed and started his first round of a planned 42 weeks of chemotherapy, followed by six months of maintenance therapy. Depending on the week, his schedule included an overnight hospital stay, a treatment day lasting more than five hours, or treatment five days in a row.
“We had become close with the nursing staff, front desk staff, as well as the people checking us in at the entrance of the hospital,” Laura says. “Stead became our home for a long time, and although we didn't like why we were there, we sure loved the staff and the care Beau was given.”
Beau also received 33 radiation treatments. He needed to be sedated each time and couldn’t eat beforehand.
“As you can imagine, not letting your 3-year-old eat until after his 2 o’clock radiation appointment was a total disaster, especially when the goal was to keep his weight up,” Laura says.
She and Nate advocated for Beau to have the first appointment available each day, which the hospital staff accommodated.
“We know there are so many people behind the scenes, helping patients gain access to care in the best way,” Laura says. “This will always stand out in my mind as one of the more generous and compassionate ways we were helped at Stead."
Road to recovery
Beau's tumor responded well to treatment, with no new growth detected after the first nine weeks of chemotherapy. Helping him feel comfortable during treatment presented a different challenge.
“Beau was a tough nut to crack,” Laura recalls. “He was 3, kind of stubborn, and too smart to be tricked by any game or pretend play to get him to comply with almost anything. The Child Life team was a huge part in getting him to relax, open up, play, and try to make the most out of a really scary situation.”
Beau’s older brother, Lane, was instrumental in Beau’s recovery, even shaving his head in solidarity.
Beau’s cancer is now considered in remission. He has resumed his active life and regularly returns to the hospital for checkups.
“You wouldn’t look at him and think this kid had cancer,” Laura says. “He is thriving.”
Now 8 and in second grade, the Swisher, Iowa boy enjoys baseball, basketball, climbing, running club, soccer, fishing, and building forts and paper airplanes. He also is interested in art, clothes, and fashion.
“He’s a social butterfly, and he’s hilarious,” Laura says. “He’s like a magnet. He attracts people.”
Laura remembers rocking Beau back to sleep in the middle of the night when he was an infant.
“While I was looking out his window, I distinctly remember thinking we're so lucky to live in a community that has a wonderful children's hospital,” Laura recalls. “I don't know why that thought popped into my head, but it may have been intuition about what was to come. We’re now four years post-diagnosis, with his last scan in May continuing to be stable and clear.
“Each provider spent many, many, hours taking us through this journey, while holding our pain so we could take care of our son,” she adds. “We are so grateful to Stead and the staff that helped save our boy. The confidence and care we received is unmatched. I couldn't imagine taking our son anywhere else for treatment.”
Kid Captain Hall of Fame
Each football season, we welcome 12 unforgettable patients into our Kid Captain Hall of Fame. Explore our four most recent stories.
Ellie Walker was 3 years old when she was diagnosed with an extremely rare and aggressive form of pediatric brain cancer at University of Iowa Health Care Stead Family Children’s Hospital. She experienced more than a year of radiation and chemotherapy as well as countless hospital stays, blood and platelet transfusions, surgeries, scans, lumbar punctures, and other difficult treatments and side effects.
Kindergarten was hard for Charley Rasmussen. She often felt sick, lost 20 pounds in a single month, and experienced severe pain that sometimes woke her at night. As her health declined, her family searched for answers. In January 2018, Charley was diagnosed with Addison’s disease, a rare condition in which the body does not produce enough essential hormones.
When Kaelyn O’Brien couldn’t walk down the hallway and her speech became slurred one morning, her parents thought their 11-year-old daughter was having a stroke.
JJ Ward underwent emergency bowel surgery less than a day after he was born. Diagnosed with meconium ileus, surgeons removed one-third of his small intestine and inserted a temporary feeding tube. The obstruction can serve as a sign of cystic fibrosis, and tests confirmed that JJ had the disease.
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