As 9-year-old Jaxon and his parents, Robin and James, walked into Johns Hopkins All Children’s Hospital in St. Petersburg, Florida, the memories flooded back.

“Over by the bridge (connecting the main hospital and Outpatient Care Center) there are these animals I used to jump on and play with,” Jaxon says, enthusiastically.

For the first time in a long time, they weren’t returning to the hospital for a doctor’s appointment, an oncology scan or a checkup. They were here to tell Jaxon’s success story. It’s a message they hope will resonate with other families.

“Pretty neat to walk down these hospital halls,” James says. “It feels good to know that we were here, and Jaxon’s life was saved here. That’s a good feeling.”

A Difficult Diagnosis

It’s hard to believe that six years earlier, Robin and James weren’t sure if their son would walk again or have normal bodily functions.

Jaxon, by all accounts, was an average, healthy baby. He crawled at 6 months old and walked by 9 months.

Yet, when Jaxon was about 2½ years old, Robin and James noticed he seemed to be having a difficult time urinating and having bowel movements. By the time he turned 3, their concerns grew.

“Our pediatrician kept telling us it’s constipation,” Robin says. “I even brought him to another hospital and was told the same thing. They did an X-ray and didn’t see anything. Come that March, it was more serious, and his stomach was distended, and he couldn’t use the bathroom for almost two days. James was going to bring him back to the same hospital, but we decided let’s go straight to Johns Hopkins All Children’s and within a half hour of him being here in the ER, they did the ultrasound, and they saw something in his stomach.”

Doctors at Johns Hopkins All Children’s determined whatever was in Jaxon’s abdominal cavity seemed to be compressing on his bladder. Once they were able to insert a catheter into Jaxon’s body, they drained a significant amount of retained urine.

Doctors determined Jaxon had a pelvic mass. A biopsy revealed it was ganglioneuroblastoma, a type of tumor that arises from nerve cells and can grow in the adrenal glands, neck, mediastinum (the area between the lungs), abdomen and pelvis.

A Long and Complex Surgery

Raquel González, M.D., in the hospital’s pediatric surgery and radiology division, told Robin and James that she and her team needed to perform surgery on Jaxon. The entire procedure took 12.5 hours (10 of which doctors spent operating), wrapping up just after 1 o’clock in the morning.

“The mass was originating in Jaxon’s pelvis, which is in the hip area and was causing pressure on the bladder and rectum leading to his symptoms,” González explains.

She remembers discussing Jaxon’s findings in the multidisciplinary tumor board to strategize the best treatment approach. “After doing a biopsy on the tumor, we decided the best step was surgical excision,” she says. “Intraoperatively, upon performing the extensive dissection, it became evident that the tumor could not be removed in its entirety without compromising any other structures. The tumor was in close proximity to Jaxon’s bladder and rectum but also adhered to large nerve endings, which control various intra-abdominal organs such as his bladder and rectum, as well as his lower body. Dividing these could affect his ability to control his bladder and bowel function.”

It made for a very complicated surgery.

“I started off trying to get the tumor from the abdomen,” González says, “but it was so intertwined and deep down in the pelvis that we had to turn him while he was asleep. And that was a big ordeal, because Jaxon was intubated, and we are all sterile. So, we're trying to have this concerted effort of moving him without contaminating anything. That was hours and hours of trying to access and remove the tumor.”

González says ganglioneuroblastoma is a challenging tumor to remove because it often adheres to neighboring structures. In Jaxon’s case, the tumor adhered to his pelvic nerves, bladder and rectum.

“It was not a tumor that we could remove fully without compromising any other structures. So, the safest thing after hours of operating, was to leave some residual tumor behind because it could not be removed safely,” González adds.

By the end of surgery, they had removed more than 85% of the tumor.

James and Robin credit Gonzalez with the meticulous work she did on Jaxon’s tumor. When they saw photos of the tumor that was inside their son, they couldn’t believe it. It was 10 centimeters long, about the size of a small cantaloupe, in Jaxon’s toddler-sized abdomen.

“He had the best care,” James says. “He had the best surgeon, Dr. González. To have almost all of the tumor taken out, she was phenomenal.”

Jaxon Begins Recovery

Following the surgery, doctors weren’t certain if Jaxon would be able to urinate normally.

“My wife, she was the champion,” James says. “After his surgery, she took off three months, and she stayed home and rehabbed him. She basically taught him how to walk again, he had to learn how to run again and he overcame everything and now he’s a little champ.”

Jaxon regained all of his bodily functions.

“He is moving, running, voiding and stooling,” González says. “Who celebrates urinating or stooling? Usually nobody. Yet, we do! Those are all the things that we celebrate because pelvic tumors can encroach on those nerve endings and can knock off bodily functions. The fact that Jaxon is able to do all these vital functions is a blessing.”

Leaving a Legacy

In January 2024, doctors at Johns Hopkins All Children’s gave Jaxon and his parents great news. Jaxon no longer needed to come back to the hospital to have regular visits with the oncology team and testing every few months to monitor the tumor.

With Jaxon’s battle against cancer behind him, he’s using his time to advocate and raise money for pediatric cancer causes. Through his involvement with the Children’s Dream Fund, he has been able to throw out a first pitch at a Tampa Bay Rays baseball game and a Boston Red Sox game. He was named a Thunder Kid at the Tampa Bay Lightning’s Hockey Fights Cancer game in November 2024, where he got to skate out onto the ice at Amalie Arena in front of a nearly sold-out crowd. He has also taken part in Coop’s Catch for Kids, Lightning coach Jon Cooper’s event, which has raised more than a million dollars for pediatric cancer research.

“At the last Coop’s Catch event, I caught a 28-inch tarpon,” Jaxon says with glee.

González is inspired by Jaxon’s dedication toward helping others. “Jaxon and his parents have taken a very challenging situation, pulled through and said we’re going to make a difference. That is amazing and says a lot about their family.”

43 for Life

Jaxon’s battle with cancer also paved the way for a special number that you’ll see embroidered on all of his jerseys and on a chain around his neck: 43. It pays tribute to the day he had surgery: April 3.

“43 for life!” Jaxon proudly says. It has become his catchphrase.

Jaxon is in honors classes in school, and he loves playing sports, first baseball, then football and now hockey.

“I had to relearn how to walk, and the doctors told me I might never be able to run again but here I am running and I’m like a really fast skater too!” Jaxon says with enthusiasm.

“We are forever grateful to the staff here. He’s a miracle, and he’s alive because of them,” James says as tears well up inside his eyes, and he gazes lovingly at his son.

“We’re so blessed to have the doctors that we did,” Robin adds.

Jaxon’s tumor was donated to pediatric cancer research, something he and his parents hope will help in moving one step closer to finding a cure.

“I don’t really want the kids who have what I have, to go through that,” Jaxon explains. “I feel lucky. I could’ve not been here today.”