In winter 2023, 14-year-old Duncan Simmons began experiencing pain in his leg. This pain worsened over time and started to spread to his hips, back, and neck.
“The pain was spreading everywhere,” says Duncan. "I couldn’t really sit down or get around on my own. I had to crawl if I needed to move somewhere."
Duncan’s parents, Chris and Neelie, were alarmed by Duncan’s pain and took him to the closest emergency room. Here, Duncan underwent multiple blood tests, scans, and an x-ray.
“The x-ray didn’t show much. They took his blood multiple times because something wasn’t right, but they couldn’t figure out what it was,” says Neelie, Duncan’s mom. "Things weren’t adding up."
Duncan’s pain continued to intensify. In the first days of 2024, Duncan underwent an emergency MRI.
"The initial physicians who looked at his MRI results had some concern,” says Chris, Duncan’s dad. "One of the doctors was a prior lymphoma survivor and shared that the scan looked similar. His bloodwork was inconclusive, so they continued to run more tests."
After going to the ER twice, Chris took Duncan to the emergency department at UPMC Children’s Hospital of Pittsburgh on Jan. 15.
Diagnosing Duncan's Pain
"Duncan had pain running through his arms," says Neelie. "He couldn’t sleep. He couldn’t eat."
After being admitted, Duncan underwent more diagnostic tests, including a CT scan.
“The CT scan was one of the final scans to run, and it revealed a mass in his abdomen,” says Chris.
Pediatric hematologist-oncologist Andrew Bukowinski, MD, happened to be on rotation and was assigned to Duncan’s case. He shared the news with Duncan and his family.
“With Dr. Bukowinski, we were able to get the ball rolling immediately,” says Chris. “He was there to answer our million questions and talked through next steps with us.”
The first step was to get a sample of the tumor and have it tested by pathology to reach a definitive diagnosis.
“Duncan had to undergo emergency surgery so that they could get a sample of the tumor,” says Chris. "The team did the biopsy and workup over the weekend, which confirmed that Duncan had Burkitt’s leukemia."
Burkitt’s leukemia is a rare blood cancer that affects white blood cells called B lymphocytes. This cancer occurs when tumor cells develop in the bone marrow and then go to the lymph nodes.
A Difficult Regimen
“Once it was confirmed that it was Burkitt’s, Duncan started chemotherapy,” says Chris. "For the first treatment, we were in the hospital for three weeks straight and then were able to go home for two weeks. After that, Duncan had chemo every 21 days, barring any issues."
With Burkitt’s being an aggressive form of cancer, the chemotherapy treatment was a difficult regimen. It caused Duncan to be readmitted to the hospital for three to four days due to fevers several times throughout treatment.
“Thankfully, we live close to Children’s, so we were able to come home easily and allow Duncan to be in a place he was comfortable in. This helped so much, especially mentally,” says Neelie.
Throughout Duncan’s treatment, progressive scans were taken to track the size of the tumor.
“After one of the scans, Dr. Bukowinski shared with us that the tumor was responding to the medicine very well,” says Chris. "We saw that the tumor was being obliterated."
After six months of chemotherapy, Duncan’s treatment was complete, and he returned home. Dr. Bukowinski and the team did follow-up bloodwork and testing to ensure Duncan was cancer-free.
“Dr. Bukowinski sent Duncan’s bone marrow samples for testing, and we learned that they were completely clear," says Chris. "I’ll never forget that moment. We rejoiced as a family!”
For extra security, Dr. Bukowinski recommended having genetic testing done to ensure that recurrence wasn’t likely.
“Dr. Bukowinski went above and beyond and sent Duncan’s samples to a high-level genetics facility to do some additional testing to ensure that the treatments were taking hold. We wanted to make sure we wouldn’t have to worry about the cancer coming back,” says Chris.
All genetic tests came back negative, and Duncan and his family were cleared to go on their annual beach vacation.
“Throughout Duncan’s journey, Dr. Bukowinski was always available. Even when he wasn’t on service or was in clinic, he would come check on Duncan during his break or after his full day of work,” says Chris. "It was so comforting to have someone who felt like family. He always kept us in the loop and presented information to us in a way we could understand."
In addition to Dr. Bukowinski’s constant support, Duncan and his parents highlight that his care was a true team effort.
“Duncan truly received the best care. The nursing staff was absolutely incredible,” says Neelie. "The pain management team was there from day one to help Duncan when he was experiencing excruciating pain. We felt so supported by the social workers who helped us with paperwork and insurance questions, and provided us with food services.
"Every team member saw Duncan where he was and met him there. The team was so good at figuring out what he needed.”
Neelie also recalls the excellent psychologists who helped her and her husband navigate conversations with their two other children.
“There was great family support at Children’s, too,” says Neelie. "The team of psychologists was available to me and Chris and helped us with how to talk to Duncan’s older and younger siblings. Duncan was receiving emotional support throughout his care, so it was nice to have emotional support for our other children. It helped manage their emotions and fears that came with Duncan being sick."
The partnership of UPMC Children’s and the Mario Lemieux Institute for Pediatric Cancer Research was another critical part of Duncan’s healing.
“With the Lemieux Foundation’s support of pediatric cancer research, there was a new medicine for Duncan’s condition which helped attack the b cells. The research they are doing is so important and is healing kids who are very sick,” says Chris.
“My son is a product of all of the collaboration amongst team members and a successful result of their clinical trials. We can’t express our gratitude for Children’s enough.”
Thinking of Other Kids
Duncan recently decided to donate his Make-A-Wish wish back to the hospital to allow kids to have food they would enjoy during chemotherapy.
“The biggest thing for me in the hospital was not being able to eat,” says Duncan. "When you are in the hospital for so long, the cafeteria food gets old, and food can be a big source of comfort."
Duncan is currently in talks with DoorDash about providing food delivery to children undergoing cancer treatment at Children’s.
“Whatever Duncan was craving, we would go track it down and pick it up,” says Neelie. "Food helped build his strength to continue treatment. If we'd had the ability to stay with him and order it for delivery, that would have been so helpful."
“We are incredibly proud of Duncan for wanting to give back and provide that service to other kids going through a similar journey,” says Chris.
Now, as a 16-year-old, Duncan is an active teenager who attends MMA training three to four times a week and loves going to the gym with friends. He is healthy and thriving.
Duncan’s treatment and results may not be representative of all similar cases.