BILLINGS — Eight-month-old Rowan Edgell is one of only a few babies in the nation navigating an extremely rare form of cancer, but his Christmas story has a miraculous ending.
See Rowan's health progression since April:
When Rowan was just one month old, his parents Serena Edgell and Zachary Edgell discovered a rapidly growing lump on his right thumb. What started as a concerning bump quickly became a race against time to find answers for their newborn son.
"I just knew something was wrong, because lumps don't just pop up for no reason," Serena said.
After extensive testing, including biopsies and MRIs, the family was referred to Dr. Navine Pinto at the Children's Hospital Colorado by Billings Clinic, where they finally received a diagnosis.
"So Rowan has an infantile fibrosarcoma, which is a soft tissue tumor that appears primarily in infants," said Dr. Breanna Breeding, the pediatric hematologist oncologist at Billings Clinic.
"When I scoured the medical literature, I could only find three reported cases of a tumor similar to Rowan's. And I couldn't find any medical literature for infantile fibrosarcoma treatments other than chemotherapy," Pinto said.
As far as treating the tumor, the Edgell family was faced with three options: chemotherapy, amputating part of Rowan's hand, or an experimental treatment.
Facing the possibility of amputation or chemotherapy for their infant son, Serena and Zachary were determined to find another option.
"We wanted to find out what was wrong with him, and we were pretty much a big no on chemo," Zachary said.
That's when Breeding and Pinto collaborated on an innovative approach. Instead of traditional treatments, they decided to use an oral medication typically used for children with brain cancer.
"Rowan's tumor has a mutation in the genes that creates a protein in what's called the MEK pathway, and the medication blocks that pathway so it can't make that protein," Breeding said.
"We know that treatments, like chemotherapy, do work for some people, but they come at a really high price," Pinto said.
The experimental treatment required Pinto, Breeding, and the Edgell family to write letters to convince their insurance company to cover the $16,000 monthly medication, but the leap of faith paid off.
"The scariest part should be, my kid has cancer, not that his medication is not approved," Serena said.
"We had to convince Rowan's family's insurance that this was the right thing to do," said Pinto. "Luckily, they were on board."
Treatment for Rowan began in September. Around 3 p.m. each day, Rowan takes an oral syringe of his medication. After four months of treatment, Rowan's tumor shrank significantly.
Now, Rowan can use his hand normally. The happy, giggling baby shows no signs of the battle he's been fighting.
"When we started the immunotherapy in September, you didn't realize how big it was until it shrank," Serena said.
The success story represents a breakthrough in pediatric oncology, demonstrating how targeted treatments can offer hope where traditional options fall short.
"For me as an oncologist, it's just really cool to get to use something that you know, based on the science, is going to work," Breeding said.
Rowan's siblings, 9-year-old Corbin Edgell and 7-year-old Adaline Edgell, have been supportive throughout the journey.
"It's awesome. I've been wishing for this for a long time. He just brings so much joy to me, and I'm so happy about it," Corbin said.
"I feel so happy, and I'm just so happy he's almost healed," Adaline said.
The family credits their strong support system, including both hospitals, their employers, and the Billings community for helping them through the challenging months.
"I'm just grateful that Denver and Billings Clinic could team up and do this," Serena said.
On Monday, Rowan will undergo a follow-up MRI to determine if surgery will be needed to remove any remaining mass.
However, his parents and the medical team remain hopeful that won't be necessary, and the mass will be small enough to dissolve with the medication.
"He's just been so laughable and just so fun and just so happy through this process, which is really hard," said Serena.
For Pinto, Rowan's case represents the best of modern medicine.
"The biggest blessing about this whole thing for me is that Rowan won't have any idea who I am," Pinto said.
"Medicine has evolved so much," said Zachary. "There's always another direction nowadays."