In January 2023, everyone in Adrina Hines’s family was sick with the coronavirus. Then the two boys, Maximus and Jaxson, came down with a nasty stomach bug. By February, everyone was healthy—except for Jaxson, the youngest. “No one else was sick, but Jaxx never just never got better. He got worse,” Adrina remembers. She took him to the pediatrician who said it sounded like pneumonia and ordered a chest X-ray and antibiotics. The X-ray did reveal a bit of pneumonia, but it also showed something else in the upper right quadrant of his chest.

“Something Else”

Some mothers might freak out when hearing their three-year-old's imaging showed “something else.” But Adrina kept her cool. She works in an administrative role in healthcare and thought it might be a calcification or kidney stones. “He was on antibiotics and already feeling so much better. I wasn’t nervous.”

But then an ultrasound showed a one-centimeter mass in Jaxson’s liver. “That’s when I started to get worried,” she says. “I wasn’t panicking, but one centimeter is kind of big. I also couldn’t think of a reasonable explanation for a liver mass. It didn’t feel good.”

Tick…Tick…Tick…

Jaxson was referred to a gastroenterologist, but the first available appointment was four weeks away. When they finally went in, “We’re thinking they are looking for a one-centimeter blood clot. After an outpatient MRI, they found a five-and-a-half centimeter tumor!” says Adrina. “And instead of discharging us, they said we needed to wait in recovery for the results. Being so close to the healthcare process, I knew that wasn’t normal. They don’t usually make you wait for results.”

Next Adrina took Jaxson to see an oncologist. Additional blood work revealed nothing unusual, but because of the growing tumor, the oncologist said cancer couldn’t be ruled out and recommended a biopsy. The problem, according to Adrina, was that there were no pediatric specialists in Las Vegas available to do a needle biopsy. Instead, they were referred to a general surgeon, and Adrina hated thinking about what that meant for her little boy: “Instead of a needle to take a sample of the tumor, he would have to get his chest opened up, which would mean weeks of recovery."

A consultation could be scheduled for six weeks away. “That was just for a consult to say yes or no to the open chest biopsy, and we had been told pathology would take another four weeks to come back,” remembers Adrina. “So now I’m thinking it’s going to be 10 weeks before we know anything. If this thing grew from one centimeter to five in just four weeks, my son might not be alive in 10 weeks! I went into full panic mode.”

A Rare Tumor

Adrina sought advice from an oncologist she knew through her work. She told him about Jaxson’s case and wondered about traveling several hours to Salt Lake City, where he would be able to get a needle biopsy done. The oncologist told her he would be happy to take Jaxson's case, but the tissue from the biopsy would still need to be sent out. “This is a very rare tumor,” he said. “You can’t just send the sample anywhere. You have to send it to a pathologist who has seen these rare cases more frequently.”

For the rest of the day, ‘a very rare tumor’ kept playing in Adrina’s head. “You never want your kid to have anything rare.” She remembered that her uncle, Randy Garcia, had once told her that if she ever needed help with a health issue to let him know. So she called her uncle and explained the situation.

“Don’t do anything else here,” Randy said. “If they don’t have the specialists you need, they’re just doing the best they can. If you don’t trust them with the biopsy, you sure can’t trust them with treatment. You have to go somewhere that really specializes in pediatric liver tumors.”

Her uncle’s words rang true. It was the same advice her oncologist colleague gave, and Adrina began researching pediatric liver specialists around the country. But she felt out of her depth. How does that work? Do we just walk into one of these hospitals?

Randy told his niece, “I have a contact for you. Once I call them they’re going to move fast. I know it’s been slow going so far, and you’ve had time to think. If we get this ball rolling, you have to be willing to drop everything and travel to where there’s a specialist.”

Adrina had done enough thinking and waiting. Her baby boy had a fast-growing tumor. “I’m ready,” she said.

Moving Fast

The next morning Adrina got a call from Healthnetwork Medical Coordinator, Amanda Bise, who recommended she take Jaxson to Cincinnati Children’s Hospital. Adrina agreed immediately. The next day she spoke to Dr. Katie Sommers, an oncologist at Cincinnati Children’s, and within a week, Adrina, her husband Jeremy, and Jaxson were on a flight headed northeast. In Cincinnati, things continued to move quickly. “They did everything back to back so we didn’t have to wait for anything,” says Adrina. “The same day we arrived, they did the biopsy. After the biopsy, they said we’d have preliminary results within 48 hours and should have a good idea if it was cancer or not.”

Good News, Good News, Scary News

Two days later the family went to see Dr. Sommers, who delivered some good news: “It’s not cancerous.” Jaxson’s tumor appeared to be a congenital hemangioma, a vascular condition where blood vessels don’t formulate correctly during development. And more good news: Because of the positioning of the tumor, Dr. Sommers felt confident they could remove it with surgery and avoid the need to shrink it with chemotherapy. Then came the scary news: Jaxson would need surgery. Dr. Sommers said if the tumor stayed too long and continued growing, it could lead to heart problems or turn cancerous.

“It was a huge relief to hear it wasn’t cancer,” Adrina says. “But I knew we weren’t through it yet. Liver surgery is no joke.”

The Right Place

While feeling some anxiety about her toddler having to undergo a major surgery, Adrina mostly felt relief and gratitude. A week ago we were trying to figure out how to get him a biopsy. Now we know it’s not cancer, she thought. “I was so glad we didn’t stay in Vegas and wait. We would have been worrying all those weeks. How would he have handled such a complex surgery if we had not traveled to Cincinnati Children’s? I really felt like we were in the right place.”

Jaxson’s surgery took ten hours. His caregivers included a vascular team, an oncology team, and two pediatric liver surgeons. Because his tumor had started intertwining with other organs, the surgeons removed the right side of his liver, his gallbladder, appendix, a shave of his right kidney, and reconstructed his diaphragm. After a couple days in ICU Jaxson was discharged, and less than a month later, he was back in school—“running, jumping, playing,” according to his mom. “He calls his scar his shark bite.”

Adrina couldn’t stop thinking about how differently things could have gone. “If we had not gone through Healthnetwork and traveled to Cincinnati, we would have spent months wondering and worrying. It would have been a lot of stress on our family. He might have needed a full liver transplant versus just a liver resection. Because of the support Healthnetwork provided, eight weeks post surgery he was completely back to his normal three-year-old life.”

“Healthnetwork Made it Possible”

It’s been a year and a half now since Jaxson’s surgery. Looking back, Adrina says, “If you’re not in the right place, you just don’t realize what the options are. The doctors can only be as good as their support team is. If they don’t have the right tools, accurate information, or the right pathologist to read the samples, they can only make decisions based on what they have. The Cincinnati team had all the best tools and resources, and Healthnetwork made it possible for us to get there. I’m so grateful.