Meet Dallas, who stayed resilient through treatment for a rare disorder
Although Dallas has spent countless hours at Children’s Health℠ to receive treatments for a rare condition — including a surgery to remove an eight-pound cyst from his stomach — he mostly remembers the fun he had at the hospital and the heroes he met along his care journey.
8-year-old Dallas was in and out of the hospital for months as his care team worked to treat a rare condition, and an even rarer complication. But if you ask Dallas what he remembers about Children’s Health, it's this:
“I liked the playroom and Seacrest studios,” he said. “A dog came to visit me. Dr. Chung was nice. I ate a lot of spaghetti.”
The fact that this is what comes to mind for Dallas — instead of all the treatments and procedures — shows just how big of an impact supportive services and comprehensive care can have on a patient’s experience at Children’s Health.
Dallas’ journey started with tummy troubles when he was 6 years old that ultimately led to a collaborative effort between specialists from both Children's Health and across the country who worked together to provide incredible care.
In medicine we have a saying: ‘Think horse, not zebra,’ meaning we should consider the most likely scenario before considering a rare or unusual diagnosis. But in Dallas’ case, it was a true zebra — or maybe even a unicorn from Mars.
— Dr. Dai Chung, Chief Executive Medical Officer and Senior Vice President of Surgical Services at Children's Health
A rare condition
When Dallas’ stomach hurt and the pain wasn’t getting better, his parents took him to the pediatrician. They’d noticed that Dallas’ belly stuck out a bit, but they figured he was just growing into his body.
But their pediatrician was concerned that his protruding belly might be a sign of a bigger health problem and sent them to Children’s Health. Tests revealed a large, fluid-filled cyst in Dallas’ abdomen caused by a rare condition called lymphangioma.
“Lymphangiomas are typically non-cancerous and don’t always need treatment,” Dr. Chung said. “But in Dallas’ case, his cyst was very large and was causing pain and digestive symptoms because it was pressing on other organs.”
Sometimes these cysts can be shrunk with an injection. But the size of Dallas’ cyst and how close it was to vital organs made the risk of side effects from the injection too high. Instead, Dr. Chung mapped out a complex surgery plan to remove the cyst and individually seal off hundreds of lymphatic vessels that were causing the cyst.
“We appreciated how Dr. Chung was honest with us about this being a big surgery,” Dallas’ mom, Tiffany, said. “From the start, he communicated so well, kept us in the know and made sure we understood everything that would happen.”
Over the course of a three-hour surgery, Dallas had an eight-pound cyst removed from his stomach. His care team kept a close eye on him as he recovered as some kids can develop a fluid leak after this type of surgery. But Dallas healed up well and showed no signs of complications.
“He was on the up and up,” Victor, Dallas’ dad, said. “He went back to school, back to playing football. But a few months later, he started having stomach issues again.”
As the demand for pediatric health care continues to rise in North Texas, Children’s Health is positioning itself to meet the unique and most complex needs of young patients like Dallas for decades to come.
After breaking ground in late 2024, Children’s Health, in collaboration with UT Southwestern Medical Center, kicked off the construction of a new Dallas pediatric campus that will feature more space and the latest in life-saving technologies to care for the next generation of kids.
An unheard-of complication
Dallas’ stomach issues brought him back to Children's Health. Tests revealed a chyle leak, which meant fluid from his lymphatic system was leaking into his abdomen.
“This type of leak is rare,” Dr. Chung said. “But when leaks do happen, they happen right after surgery, so it didn’t make any sense why he had this leak seven months later.”
In many cases, chyle leaks can heal by following a low-fat diet. Since bodies form chyle when digesting fat, eating less fat means a body will produce less chyle. And when there’s less chyle, there’s less pressure on the leak, allowing it to heal.
Although cutting out bacon and other favorite foods was no fun for Dallas, it helped him get better. But then he’d get worse again, before feeling better — again. With no consistent improvement, the care team moved to total parietal nutrition, where he’d get his nutrition from a formula through an IV.
After consulting experts across the country about other treatment options, Dr. Chung determined surgery to close the leak was Dallas' best option.
"The surgery went well, and Dallas proved his resiliency yet again," Dr. Chung said.
Recently, after thorough analysis of a biopsy, Dallas’ care team discovered he was born with a rare genetic disorder that falls within the PIK3CA-related overgrowth spectrum, which causes the body to create too much tissue. His physicians prescribed him a new medication to help slow the abnormal tissue growth.
For his family, the diagnosis has allowed them to better understand Dallas as they continue to support him on his care journey.
A doctor that makes all the difference
Because Dallas could still develop more cysts, he’ll need ongoing checkups with his care team. But for now, he can focus on the things he loves, including football, playing outside, video games and his Pomeranian, Cocoa.
"We deeply appreciate that Children’s Health has so many specialists in one place and is a place that really feels like it’s for kids," his dad, Victor, said. "As a military family, we've moved around a lot — and we know firsthand that not all cities have a hospital that could've met Dallas' unique needs."
And while Dallas remembers the fun times and the hospital cafeteria’s spaghetti, when Tiffany and Victor think of Children’s Health, they think of Dr. Chung.
Dr. Chung made all the difference. Every step of the way, he treated Dallas like his own son.
— Tiffany, Dallas' mom
Dallas expressed his thanks to Dr. Chung with a letter and a drawing. The drawing shows a stick figure of Dr. Chung (wearing a superhero cape) removing a cyst (which Dallas drew as a bubble) from Dallas’ belly.
Tiffany had an artist adapt Dallas’ drawing to put on a mug. That mug now lives on Dr. Chung’s desk.
“It’s a treasure,” Dr. Chung said. “Looking at this mug keeps me grounded. It reminds me that at the end of the day, no matter what, it's always all about the kids and their families.”
Meet more Children's Health patients
Read more patient stories like Dallas’ and meet our Patient Ambassadors to learn how Children's Health makes life better for children.
How you can help
Help kids like Dallas by exploring our ways to give or by giving today!
Kids count on us. We count on you.
Give to support innovative research, lifesaving treatments and compassionate care.
Did you enjoy this story?
If you would like to receive an email when new stories like this one are posted to our website, please complete the form below. We won't share your information, and you can unsubscribe any time.
