The Tiny Warrior
4-week-old Sawyer Long’s journey to diagnosis
Six-month-old Sawyer Long is a tiny warrior.
At just 4 weeks old, he was diagnosed with infantile fibrosarcoma. In his first few months of life, he has faced more obstacles than many do in a lifetime. Thankfully, Sawyer is surrounded by the love of wonderful family and caregivers.
Our hero’s journey
Sawyer’s health journey began on Mother’s Day this year. His mom, Kinsey, was rocking him to sleep when she noticed a bump underneath his chin. The following day, Kinsey and her husband, Jeremy, took Sawyer to see his pediatrician, who expressed concern and suggested they immediately see an ear, nose and throat (ENT) specialist.
“When the ENT specialist examined Sawyer, he said, ‘Oh my goodness. It’s amazing this child is still breathing right now.’ Whatever it was we were feeling the night before had grown exponentially in just 24 hours,” Kinsey said.
The Long family was sent to Novant Health Hemby Children’s Hospital for testing. An MRI, blood tests and a biopsy all followed.
Because of Sawyer’s age and potential diagnosis, his doctors advised the biopsy be sent to a lab for further testing. The next two weeks were excruciating for Kinsey and Jeremy, as they waited for Sawyer’s results.
“Our doctor continued to assure us they would find the answer,” Kinsey said. “She made us feel so taken care of.”
Finally, they had their answer: Sawyer was diagnosed with infantile fibrosarcoma, a rare cancer of the soft tissues. The Longs and Sawyer’s care team considered it a good day when they received the diagnosis. It was the one they were hoping for because Sawyer would be able to be treated with an oral medication called larotrectinib. Thankfully, he would not need chemotherapy or surgery.
The Hemby difference
During their most trying time, the team at Hemby Children’s Hospital felt like family to Kinsey and Jeremy.
“We believe God led us to Hemby for a reason. We were able to be a priority and focus because it is a smaller hospital. The nurses would even argue over who got to care for Sawyer each day,” Kinsey said. “We just felt safe there.”
Kinsey worked with a child life specialist who helped her physically connect with Sawyer in new ways. She could no longer feed or hold him because of his tracheostomy tube. Together, they explored ways to give him positive touch so he could feel his mother’s loving presence.
Kinsey also recalled the support they received from the nurses while they waited for answers in those first few weeks.
“I was so worried and had a hard time sleeping. There were times I would walk the halls in the middle of the night, and a nurse would always be by my side. It meant the world to me,” she said.
Our hero today
After his first few treatments, Sawyer’s tumor shrunk dramatically. He is now home with his parents, and they administer his medication daily. He goes to the hospital every two months for an MRI. At his last appointment, the tumor had shrunk 85% from its original size. The Long family and the Hemby Children’s Hospital team are hopeful Sawyer’s next MRI will show the tumor completely gone.
Kinsey and Jeremy have discussed how they’ll tell Sawyer about what he endured his first few months of life. They agree they will be honest and open when they tell him the story.
“I want to be transparent and tell him everything he went through so he knows how strong he is and how loved he is,” Kinsey said. “I hope through his strength he will be able to help other families and children who may go through a similar situation in the future.”
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