Ivan Young, 14, likes drawing, video games and military history. Visiting the USS Yorktown in Mount Pleasant, he knew the answers to all of the questions the retired veterans threw his way, said his mom, Kelly Knight.
"He’s very nerdy,” she said affectionately.
His dad, Aaron Young, said Ivan has always been a sweet and kind kid who puts others first – “I know he doesn’t get that from me,” he laughed.
“He’s always been an old soul,” Young said.
Ivan wants to be an architect when he grows up. And thanks to a multidisciplinary team that pooled the expertise and resources of both adult and pediatric physicians at MUSC Hollings Cancer Center and MUSC Children’s Health, the path is now clear for him to do almost anything he wants, with few physical reminders of the extraordinary lung cancer surgery he underwent in 2021.
Ivan had suffered from severe, debilitating migraines since he was about 6 years old. They got so bad that his stepmom brought him in for bloodwork to try to find a cause. The only thing that was off was an exceptionally high sedimentation rate in his blood, which usually indicates inflammation, but further tests didn’t reveal anything. A few months later, he started having trouble breathing.
“At the very beginning, I was really wheezy, and it felt really hard to breathe,” he said.
His mother brought him to a hospital near his home in North Myrtle Beach, where he was diagnosed with pneumonia. But the antibiotics didn’t help. Knight insisted on an X-ray, which showed a mass of some sort. The doctors there said that Ivan needed to see a pediatric pulmonologist, so Young and Knight drove Ivan to Charleston for additional scans. After the chest CT, the three got back into the car to hit the road back to North Myrtle Beach.
“We were almost out of Charleston, and they called and said, ‘Turn around, come back,’” Ivan said. “And they told my mom and dad it was a tumor.”
Ivan and his parents were sent directly to the Emergency Department at MUSC Shawn Jenkins Children’s Hospital (SJCH) to be admitted.
The mass would turn out to be a mucoepidermoid carcinoma growing in his airway. Mucoepidermoid carcinoma is a salivary gland type of cancer that accounts for about 0.2% of lung tumors. It’s not connected to smoking, and about 20% of these tumors are found in people under the age of 20.
The team now had to figure out the best way to remove the tumor.
Robotic sleeve resection
At first, doctors thought Ivan would need a thoracotomy – a type of surgery where a large incision is made in the side of the chest and the muscles pulled back, exposing the organs in the upper body.
But thoracotomies come with significant recovery time as well as extra risks for growing children. In addition, the pediatric cardiothoracic team specializes in congenital heart conditions, not lung surgeries. The pediatric surgeons and lead pediatric oncologist Michelle Hudspeth, M.D., decided to consult with Barry Gibney, D.O., who specializes in adult lung cancer and lung transplant surgery.
Pediatric oncologist Michelle Hudspeth, M.D., checks in with Ivan two years after his surgery. Photo by Kristin Lee .
Gibney started using a robot for his lung surgeries in 2019 and quickly realized its benefits. At this point, he’s performed more than 400 surgeries using the robot. Altogether, he and his partners, Ian Bostock, M.D., and Kathryn Engelhardt, M.D., have performed about 500 of the robotic surgeries, making Hollings one of the busiest robotic lung surgery centers in the Southeast.
“I think this is going to be the future of the majority of minimally invasive surgeries. I would envision a future where every operating room has a robot in it,” he said. “I think that laparoscopy and other minimally invasive approaches were really just a stopgap until we developed the technology to do things robotically. The advantages are so, so much greater. The instruments are easier to work with. The optics on the camera are amazing. And then, there's advantages to the surgeon in terms of the ergonomics.”
While thoracotomies require a four- to six-day hospital stay and have a typical recovery time of six weeks, minimally invasive robotic surgeries typically involve a two- to three-day hospital stay and a two-week recovery time.
However, none of the operating rooms in the children’s hospital is equipped with a robot. Ashley River Tower (ART), the MUSC Health hospital where Gibney typically operates, has robots in its operating rooms but doesn’t usually accommodate children.
The pediatric and adult teams came together to precisely choreograph a robotic operation on the slight adolescent.
Gibney would perform a robotic sleeve resection. This surgery is an alternative to a pneumectomy, or removal of an entire lung, which is the usual treatment when the tumor is in an airway. Instead of removing one of Ivan’s lungs, Gibney would snip his airway, cutting out the tumor, and then reattach the lower airway to the upper airway, thus leaving as much lung tissue in place as possible.
“These are complex operations that really aren't done in many centers in the Southeast,” he said. Most of the sleeve resections that are performed aren’t done robotically, he added.
Knight and Young had to put a lot of trust in the doctors. When Knight left the hospital to get her husband, Young was alone with Ivan and ended up being the one to sign the papers agreeing to the operation.
“That was the worst feeling in my gut I’ve ever had. I have to give you permission to cut my son,” he recalled.
But, he said, the doctors did a good job of explaining what they wanted to do and why. Knight said she’d never really thought one way or the other about the care available at MUSC Children’s Health before, but she was grateful for the innovation and creativity she saw at work as the physicians decided on the best course of action.
“It's hard to explain to someone what it feels like when you have a sick kid, like that kind of sick,” Knight said. “But at the same time, when you find out there's that kind of innovation behind the care that they're going to be getting, then you get confident that he’s in the best possible hands that he could possibly be in. You know, we're here for a reason. God put us here for a reason, with these specific people with these specific talents – and we thank our lucky stars every single day.
“I don't even know how to explain it – just staring mortality in the face through the eyes of your child is sort of … humbling. But he's an amazing kid. He shocks me every day with things that he says. He’s always been a really thoughtful kid,” she said.
Because of Ivan’s small stature, Gibney had to order special supplies for the operation. Ivan stayed in the hospital for a week before the surgery occurred – in “kid jail,” as he called it, on the ninth floor of SJCH, filling his time with video games and TV. Because COVID restrictions were in place, a limited number of visitors could come to see him.
The Child Life team at MUSC Shawn Jenkins Children's Hospital has a variety of toys and games to help patients to occupy their time. Photo provided
Finally, on the day of his surgery, Ivan was wheeled over to ART – it's connected to the children’s hospital by a skywalk – where a pediatric anesthesia team awaited his arrival and participated in the surgery. Gibney was able to use only three of the robot’s four arms in Ivan’s chest cavity, but otherwise the surgery proceeded similarly to the adult surgeries.
After surgery, Ivan was wheeled back to the children’s hospital for recovery.
Life after surgery
Today, Ivan has only three small, barely visible scars from the surgery. Although he’s missing about a third of his lung on the right side, he can breathe normally and run and play like any other kid. Because he was young and the tissues healed so tightly, he needed a follow-up procedure to open up his airways a little more. He has scans to check for any recurrence, but so far his prognosis is good. Plus, his migraines have almost completely disappeared.
“We were able to save him a thoracotomy, which in somebody who’s growing is known to cause things like scoliosis and one-sided chest growth abnormalities. So not only did we save him the pain that comes with a thoracotomy but also some of the growth things that are known to occur,” Gibney said.
Gibney attributed the successful surgery to the collaborative spirit at MUSC.
“I think that’s what makes MUSC unique in the care we provide, is that we do things in a team-based approach. We have the expertise; we know how to reach across the aisle to make sure that we all work together, and I think for this child it really made a big difference,” he said. “Twenty years from now, when he only has a couple of small portal incisions instead of a big thoracotomy incision, and he’s grown normally and is thriving, I think it will have been to his benefit.”
Knight and Young remain grateful for not just the medical care that Ivan got but also for the way that the children’s hospital looked out for his overall well-being. The Child Life team works to keep life as normal as possible for hospitalized children through play and support activities. Knight, having now been on the receiving end of donated games and toys during their stay, said she’ll never look at a toy drive for a children’s hospital the same way. The trio also loved the visits from the always popular Therapy Animal team, which brings service dogs around campus to visit with and comfort patients, visitors and staff.
Ivan gets a visit from one of the therapy dogs. Photo provided .
Young and Knight couldn’t speak highly enough about every aspect of their experience with MUSC Children’s Health and Hollings Cancer Center. Young, who is a bit wary of hospitals after some bad experiences in the past, was pleasantly surprised that he was happy with how everyone at SJCH treated them, whether doctors or non-clinical staff like the environmental services team.
Knight said she felt lucky that this care was available locally. She would have traveled any distance necessary to get the right care for Ivan, she said. Young agreed.
“I couldn’t have asked for a better team to take care of him,” he said.