Theo Stephen Theo Stephen (Photo provided)

Theo is my clever, funny, tenacious, fiercely loving 12-year-old son. He’s a tight hugger, a voracious reader, a LEGO® builder, and a video game enthusiast. He’s passionate about American Sign Language and recently declared that, for college, he wants to go to Rochester Institute of Technology to become a math teacher for deaf and hard of hearing students at a school like his own. Theo is my young man, who I am beyond grateful to see thriving in this world, because when Theo was a year old, he was diagnosed with a brain tumor.

Theo’s first recognizable symptom was a fairly persistent head tilt. Getting ready to celebrate his first birthday that weekend, we took Theo to the pediatrician, thinking he may have an ear infection that we didn’t want to interfere with the festivities. The doctor at his sick-visit didn’t see anything concerning and sent us on our way. Family and friends came to Theo’s barnyard birthday bash and, even though he didn’t seem as chipper as usual, he dug right into his birthday cake!

Three days later, however, Theo’s balance rapidly deteriorated and he could no longer sit unsupported. We were back at the pediatrician’s office, this time with a different doctor. This doctor noticed a slight change in his head circumference. She told us she was looking for signs of pressure in his head, which she didn’t see. She determined that because Theo would be seeing his regular doctor in 2 days, he should be re-examined and sent for scans if there was no change for the better.

His regular pediatrician got right to business. He very calmly spoke to us about hydrocephalus and explained that he wanted to see a computerized tomography (CT) scan to verify his suspicion and to hopefully see the cause. We went directly to the emergency room, where the scan confirmed a mass in Theo’s brain.

Theo underwent surgery to remove 80% of the mass that was situated between his brain stem and cerebellum. It felt like pathology took an eternity, but eventually it was determined to be medulloblastoma – a malignant tumor requiring several rounds of chemotherapy, as well as stem-cell transplants.

Lori Stephen Family Lori Stephen (center) and family   (Photo provided)

Upon the completion of treatment, we were full of hope that this ordeal would be behind us and feared that it wouldn’t be. Theo was a year old when he was diagnosed with brain cancer. His life was just beginning, yet we were facing the agonizing fear that this could be the end. But here we are, 10 years later, blessed with Theo’s good health and true happiness.

Theo has overcome more challenges than most people are faced with in a lifetime. Some of the effects of his tumor and treatment are hearing loss, vision issues, speech delay, extensive dental issues, fine and gross motor deficits, and growth hormone imbalance. As his parents, we sometimes worry that Theo will view these challenges as barriers. But more often than not, Theo proves to us and everyone else that nothing can stop him.

It is my privilege to believe in Theo, and it is my passion to advocate for him. Theo’s future looks bright, and I want others to see that. But I also want people to know that work still needs to be done to ensure the best treatments and quality of life for people with brain tumors.

My involvement with the National Brain Tumor Society (NBTS) started in 2013, when our family participated in the Race for Hope 5K in Washington, DC for the first time. At that time, Theo was 2 ½ years old and had completed his treatment for medulloblastoma a year earlier. A beautiful group of our loved ones, known as Theo’s Green Racers, has gathered each year since then to continue supporting NBTS’s efforts to advocate for the brain tumor community. In 2017, Theo and I also started attending Head to the Hill as volunteers for NBTS. We have met with lawmakers to share Theo’s journey and, hopefully, inspire them to support legislation and funding for programs to continue the necessary research that will lead to better outcomes for people diagnosed with brain tumors. Theo was 6 years old when he first visited the Capitol; his captivating presence made quite an impact at that time, and he has continued to hone his advocacy skills each year since.

It was our advocacy at Head to the Hill that led to NBTS nominating me as a consumer advocate for the Rare Cancers Research Program (RCRP). One of our main tasks each year at the Capitol is continued and increased funding for the Congressionally Directed Medical Research Programs, so I was very enthusiastic about the opportunity to be involved. If I’m honest, it was Theo who caught everyone’s attention in those meetings, but he’s not old enough to fill the role just yet! So I was gifted the incredible honor of serving on this panel of brilliant and lovely folks, all of whom are invested in making a positive difference in the lives of people, like Theo and our family, who are affected by rare cancers.

Being a consumer advocate without scientific or medical training, I initially felt intimidated and nervous that I may not be able to contribute something valuable to the panel. However, I felt very quickly that my perspective was immensely valued by everyone involved. The opportunity to participate in discussions about rare cancers with scientific and medical professionals was humbling and enlightening. Every person in the room approached each discussion with confidence in their area of expertise, as well as humility and an open mind, and always with high regard for the ultimate impact on the patient and caregiver community. I have enormous gratitude for the work being done in the scientific community, and I now have the unique perspective of witnessing the commitment those folks have to benefiting those who rely on their scientific efforts the most.

— Lori Stephen

The views, opinions, and/or findings contained in this paper are those of the author(s) and should not be construed as an official Department of Defense position, policy or decision.

Last updated Friday, May 26, 2023