Sawyer is a young man with a big personality; he loves to sing, dance and put on a show! He is the ‘hub’ of his huge family, being one of eight children, always the first to give everyone a hug and the loudest to cheer for others. He is both a big and little brother, an uncle, an artist, a basketball player, and the world’s biggest Spiderman fan! He was also born with an extra chromosome, having been diagnosed with Down syndrome at birth.

Sawyer was never one to complain, but the day after Christmas in 2025, he kept saying how his “head hurt” and asked over and over if he could have medicine. That was his family’s first red flag to his health – Sawyer did not like to take meds. This went on for three days. Certain he was coming down with the flu, Sawyer’s dad took him to the doctor where they prescribed antibiotics for a sinus infection. Later that evening Sawyer passed out, and upon receiving a FaceTime call from Sawyer and his dad, Sawyer’s mom, Renee, knew something was very wrong. Sawyer was taken immediately to the ER where Renee was meeting him. No sooner had she walked in did the doctor say, “We have found a mass on Sawyer’s brain.”

An MRI showed the details. It turned out a tumor was in the pineal region of Sawyer’s brain and completely occluding the flow of cerebral spinal fluid which caused hydrocephalus. The next day was New Year’s Eve, and Sawyer spent it undergoing a third ventriculostomy and a biopsy. Sawyer was diagnosed with germinoma of the CNS.

Sawyer is a rare case. Having Down syndrome coupled with a solid tumor in his brain is nearly unheard of. Sawyer’s doctor told his family that Sawyer was one of 25-30 known cases in the country in the last 50 years, and that data was so thin they weren’t sure how to treat him.

After his procedures, Sawyer was sent to a nearby hospital where doctors performed genetic testing and held meetings with other doctors from different parts of the country all with one goal in mind: treat the cancer while preserving this incredible kid.

After almost two excruciating weeks of waiting, they finally had a plan. Since children with Down syndrome have higher toxicity rates, meaning their bodies don’t process things like a typical person, everything was tailored specifically to Sawyer and closely monitored.

First, Sawyer completed 16 consecutive weeks of chemotherapy like a champ! His family was pleased to find out that this alternative treatment to his situation had yielded an 80% reduction in the size of his tumor. Then, he had to have the remaining tumor resected in hopes that he’d be able to receive a lower radiation dose as the next part of his treatment. Unfortunately, because there were viable cells remaining, Sawyer had to do the full standard course of five weeks of radiation. Doctors used limited MRI imaging to ensure treatment was only being delivered where absolutely necessary – it was important to not just save Sawyer from his cancer, but to protect his cognitive function so he could still do all the things he loved after treatment.

A month after finishing this treatment, Sawyer was declared NED (having no evidence of disease)! It was a rare feat, and to say his family celebrated is an understatement.

“My hope for Sawyer is that he will live a long life that is rich in both experience and joy,” said Renee, Sawyer’s mom. “He wants to be a rockstar, he says, and I hope one day to see him living his dream! I also hope that he learns what a brave young man he is, and he is able to use his story to inspire others.”

Throughout Sawyer’s journey, his main concern was never himself. He worried about everyone else. “He’d tell us all ‘I will be ok I promise’ if he ever saw a tear fall,” shared Renee. “He smiled through every treatment, even when I could see in his eyes he was hurting. He never once let the pain show. In his mind, he had to protect the rest of us from hurting. That’s what makes him a true hero.”

To others who may also be facing a childhood cancer diagnosis, Renee shares this advice: “It can be scary to not know what is to come. I learned quickly to ask all the questions and that no question was a wrong question. They were all valid. Find a team with a leader a driver that you trust. Also, for caregivers, find time to process what is happening. Give yourself moments to let it out when your child is not looking or being entertained by someone besides you. You have to in order to stay grounded.”

Renee also shared that her family received support from Alex’s Lemonade Stand Foundation (ALSF) during this time. “My favorite was the planner, where I could keep track of all that cancer treatment entails,” said Renee. “It made me feel a little less panicked knowing I had it all right there!” Sawyer’s younger siblings have also been enrolled as SuperSibs, getting encouraging activities and packets in the mail.

To Renee, ALSF means hope for the future of pediatric cancer research, and for every child and sibling and family that is faced with this terrible disease.

Information provided by Renee, Sawyer’s mom
Updated September 2026