In 2018, 5-year-old Lucas Doll began struggling with sleep disturbances and sudden onsets of vomiting that defied explanation. For a year-and-a-half, Lucas, along with his mother, Lina, visited numerous specialists, but none could provide a diagnosis.
During this period of uncertainty, Lucas participated in a sleep study. It was here that a vigilant radiologist noticed signs of central sleep apnea, a condition that begins in the brain. Recognizing the potential gravity of this finding, the radiologist recommended an MRI. This crucial decision led to the discovery of Lucas’ brain tumor.
On Dec. 2, 2019, Lucas underwent surgery at the Medical University of South Carolina to biopsy the tumor. It was then that this spirited Mount Pleasant boy was diagnosed with DIPG – diffuse intrinsic pontine glioma – a rare and aggressive brain cancer that almost exclusively affects young children. The prognosis for DIPG is grim, with palliative treatment doing little more than extending the child’s life by weeks or scant months.
Seeking a second opinion, Lucas was seen by experts at St. Jude Children’s Hospital in Memphis, Tennessee, and began a short course of radiation therapy that lasted about a month-and-a-half. The hope was to shrink what remained of the tumor. During Lucas’ time at St. Jude, a miraculous discovery was made in this already complex case: Lucas did not have DIPG.
It was the first miracle in a line of many that gave the Doll family hope. Though Lucas did not have the rare and deadly DIPG, he still had a ganglioglioma, which is a low-risk tumor. However, his tumor contained a gene mutation that mimics one found in DIPG. Lucas’ case was so rare that, at the time, he was one of only five others in the world with the condition.
Lucas was entered into a clinical trial in Ann Arbor, Michigan, where he and his family would travel every nine weeks for the next two years for Lucas’ dose of chemo and imaging.
It’s now 2025, and Lucas is a thriving, happy, healthy young man. Reflecting on their journey, Lina recalled, “In the beginning, everything moved so fast. We went from MUSC to St. Jude, radiation … ” she trailed off. “Then, when we entered the clinical trial, we went to Michigan every nine weeks to get medicine. Every nine weeks for two years,” sighed Lina. “Not many of the children in the trial were being treated successfully, but Lucas responded well.”
What followed was either a successful trial or a miracle. “In April of 2022, I was just overcome with the belief that Lucas would be OK. Going to Ann Arbor every nine weeks was robbing Lucas of a childhood, and we discussed stopping the clinical trial. His doctors wanted to continue, but I, I don’t know, call it mother’s instinct. I just felt that he was cured.”
Taking a leap of faith, the Dolls discontinued the trial, though they kept up with regular check-ups – first, every three months, then every six. Lucas was doing so well he was moved into a survivorship clinic and will have one final MRI in March. After that, he will no longer require visits with oncology-related physicians. He will be released to his primary care physician to be treated.
“For all these years,” laughed Lina, “Lucas always went with the flow and trusted us – his mom and dad. Now that he’s almost 11, he’s asking questions. I’ll never lie to him, but, sometimes, the answers make him a little anxious. At times, even a cold will make him nervous.” Despite the anxiety, Lucas has many more good days than bad. He is blossoming now that he is free from his diagnosis. “For so long, Lucas’ life was about appointments – going here, going there, tests, treatments,” recounted Lina. “Now it’s like he’s waking up. He’s outgoing, social and merging into a more normal way of life.”
Lucas loves sports and excels in school despite having missed so much during his treatment. “He never missed a beat when it came to his education. He’s very loving and kind, and his teachers are always complementing him on how wonderful he is,” Lina smiled.
Lucas has a passion for history and is incredibly knowledgeable. He also enjoys art and painting with his aunt. “He’s got an excellent vocabulary and loves to win a good debate,” his mother said. “He’s strong-willed and has a natural drive.”
Reflecting on their journey, Lina shared, “I had moments when I was terrified. Now I thank God for what we have. I lost my joy for a while, but I’ve regained it. I appreciate the simple things. Coffee in the morning, movies and popcorn with Lucas. This was a spiritual awakening for me, and I do regret a little that I didn’t write it all down. I want always to remember the miracles and joy in life.”
Lucas’ resilience has been remarkable both during and after treatment. Despite the challenges, Lucas has emerged strong and mature. “Our life is now filled with activities,” Lina stated. “Boy Scouts, karate, homework and flag football.”
Lucas has kept a large box filled with letters that he received while undergoing treatment, reminding him of the outpouring of love and support from so many. Lina hopes to help guide other parents through similar journeys, offering them hope and strength.
Lucas’ story is a testament to the power of hope, resilience and the unwavering support of loved ones. He hopes that his journey, filled with challenges and triumphs, serves as an inspiration to others.
By Amy Gesell
