'Gentle giant' Sam battled neuroblastoma into remission

“Just looking at him, you would never know what he’s been through,’’ said his dad, Lance.

It’s hard to imagine that Sam is, at age 6, already a veteran of more than two years of treatment for a rare type of cancer called neuroblastoma. This cancer, which typically occurs in children younger than 5, is triggered when immature nerve cells begin to develop tumors.

Sam’s cancer appeared just before he turned 3, beginning with some vague symptoms. Sometimes his neck hurt. And after sitting on his dad’s lap, he complained that his hip hurt, too. Next, his parents, Lance and Angie Paulson, noticed that his gait was off, and that he seemed very pale.

They were worried because in 2018, there was a nationwide spate of cases of a paralytic disease in young children. But two visits to urgent care did not reveal a source and initially, ibuprofen seemed to make him feel better.

Their third trip took them to the Emergency Department at American Family Children’s Hospital. There, a physician suspected cancer, ordered an ultrasound, and before long, pediatric oncologist Dr. Kenneth DeSantes was examining Sam, gently touching his abdomen to feel for tumors.

It turned out that Sam did indeed have a tumor, which originated in the area of the adrenal gland, on top one of his kidneys. He was diagnosed with neuroblastoma on his third birthday, in November 2018.

He was admitted for his first of many stays at AFCH. The Paulsons met with Dr. DeSantes, who described the standard course of treatment as a long roadmap involving detours if the cancer relapsed, which in Sam’s case it did.

“He was honest with us (about how difficult it would be for Sam), but you could just feel the empathy from him,’’ Lance said of DeSantes. “He told us, ‘If you want a second opinion, I will support you in any way you need.’ ‘’

But as the Paulsons did their research on neuroblastoma, they learned that De Santes was part of a Pediatric Cancer Dream Team, and that many of the cutting edge trials for the disease were available close to home in Madison.

Indeed, following chemotherapy, Sam took part in a first-ever trial using a radioactive compound called I-131 MIBG, which seeks out cancer cells, as part of the initial therapy for children with “high-risk” neuroblastoma.

Because the treatment temporarily makes the patient radioactive, Sam had to live for a time in a special, lead-lined room at AFCH.

“We told him it would be like living on a spaceship,’’ Lance said. “Sam was such a champ about it, such a strong little guy.”

But cancer treatment is tough, even on strong guys.

A lengthy surgery to remove the tumor also involved sacrificing Sam’s left kidney. And that was followed by a 30-day round of “very tough” chemotherapy, that resulted in diarrhea so bad that Sam needed care from a wound care nurse.

Still, the care team at AFCH helped keep Sam’s spirits up. Every night, Sam liked to set a “bear trap” somewhere on his floor at the hospital.

“Every morning, no matter how sick he was, he wanted to go check his trap,’’ Lance said. “And each night, the nurses and child life team would have put another stuffed animal in the trap.”

Other things lifted their spirits, including Santa arriving in a fire engine during Sam’s first stay in the hospital and visits from the therapy dogs. Both twins were present for a visit from NFL star and former UW football player J.J. Watt.

“He not only signed footballs for the boys, he asked them to sign a football for him,’’ Lance said. Later that night, when everyone else had gone home, Lance went down the hallway and saw that Watt had stayed behind.

“There was J.J., all by himself with some nurses, holding and rocking a little baby,’’ Paulson said. “I’ll never forget that.”

Sam’s therapy would eventually encompass more than two years of treatments that included chemotherapy, surgery, radiation, immunotherapy and two stem cell transplants. And he took part in a second clinical trial to evaluate the drug DFMO, combined with chemotherapy and immunotherapy.

“The foundation of our relationship with Dr. DeSantes is trust,’’ Lance said. Angie added that when the DFMO temporarily affected Sam’s hearing, there was no question about ending that part of the clinical trial immediately.

For the entire time, either Angie or Lance slept at the hospital and the other parent was home with Maxfield, who missed his twin badly. They had no family locally, which made them appreciate the AFCH staff even more.

“Those nurses are literally angels,’’ Lance said. “The nurses, the CNAs, the child life staff, the therapists, the fellows, they were all so amazing.”

They were especially appreciative of Lisa Keller, NP, who was always available by phone when Sam had issues when he was home from the hospital.

“Lisa was so responsive,’’ Lance said. “We would call her day or night and she was literally always there for us.”

Today, Sam’s cancer is in complete remission and he barely seems to remember all he's been through. His parents, though, are changed forever.

“We love our boys even more than we did before,’’ Angie said. “We appreciate the little things, like just being able to take them to play at a park. I remember thinking, 'Oh, God, it is so wonderful to just have this moment with them.' "

Samuel participated in a number of clinical trials and he benefitted greatly from neuroblastoma research offered at American Family Children's Hospital. Angie and Lance are grateful beyond words for the care Samuel received from Dr. Desantes, Keller, nurses Luray and Lynnae and their entire care team.

Going forward, the Paulsons want to be a resource to other families facing pediatric cancer.

“If there’s anything we can do to give back, please let us help,’’ Lance said.