Tens of thousands of people across the country today live with a form of brain cancer. There are forms of those tumors that are not curable, notably tumors found in children. Many are hoping for a clinical trial breakthrough to benefit all people living with cancer.
The journal entries begin a few months ago for a teen who believed in taking on new challenges, living up to one's full potential. It’s what led Dylan Lawrence of Clarksville, Tennessee, to play every instrument he could find.
“Guitar, acoustic and bass, the drums, tuba, sousaphone,” listed Susan Lawrence, Dylan’s stepmom. “You put the kid on a path, and he would just run with it. He just took to it like a sea turtle to water.”
Since he was three, Dylan loved sea turtles, which led him to decide he wanted to be a marine veterinarian.
“It’s so difficult to sum him up,” Susan smiled. “He’s so many different things; a kind, funny, intelligent ball of energy.”
Dylan started writing these journal entries after he got a hard diagnosis.
“In December, he got really sick,” said Susan. “We took him to the emergency room. His neurologist came in and told us he had diffuse intrinsic pontine glioma, that it was incurable, and the average prognosis is six to eight months.”
Dylan was only 16 when he got the news.
According to the American Cancer Society, more than 25,000 malignant tumors of the brain and spinal cord are diagnosed in the US each year.
For Dylan, the tumor was located in a part of the brainstem called the pons, where it can’t be surgically removed because it could damage critical parts of the brain. According to DIPG.org, this tumor usually happens in children between the ages of 5 and 7. Fewer than 10% of them survive two years after they’re diagnosed.
“I think we have a serious chance of really being able to cure this in the next 10 years,” said Keith Desserich, chairman and co-founder of the Cure Starts Now Foundation.
He says because DIPG can’t be handled through usual treatments, the effort to find a cure may bring something that benefits the cures of all forms of cancer.
“By not having the options of chemotherapy, radiation, and surgery, you’re forced to find something new,” he said. “I wouldn’t be doing this if I felt this was going to fail.”
The foundation works through DIPG.org, which lists 69 current trials across the world. Dylan chose one. He flew out to California to take the preliminary steps to be part of a trial at Stanford University. The treatment is called CAR-T therapy, which involves engineering T-cells.
Dylan recorded messages while in California.
“There’s a lot of hope in this trial. Not necessarily just for me, but I have hope for others as well,” Dylan said in the message. “I can help the research further along. Eventually, this will be cured. No one will have to go through what I’m going through. I have hope this will do great things.”
“He had a biopsy at Stanford,” said Susan. “He went back and had another surgery that placed a catheter in his brain.”
Our news team with Scripps was making plans with Dylan and his family to possibly fly out and meet him in California and tell his story as he went through the clinical trial. We did not get that opportunity.
While at home, Dylan died the same week he was scheduled to return to California and begin the trial.
“Cancer is not a smiling bald child who’s getting better. Cancer is ghastly and horrific, and it took our son away,” said Susan.
People all over the country have sent Dylan’s family toy sea turtles in memory of the kid who taught to live life to its full potential.
“When Dylan was diagnosed, even in those first couple of days, he said, ‘I don’t want my life to be pointless,’” said Susan. “I promised him it wouldn’t be.”
At his request, Dylan’s brain has been donated to Stanford’s lab to study DIPG. Susan is now Dylan’s voice, bringing attention to clinical trials.
Susan read from Dylan’s journal.
“I imagine most of the people reading this will already know me, but if we never get the chance to meet, hi, I’m Dylan J. Lawrence. Take what time you have as a blessing.”
For more on Dylan’s story, visit his family’s Facebook page.
For more on Cure Starts Now and DIPG, click here.