CLARKSVILLE, Tenn. (CLARKSVILLENOW) – Dec. 16 was a just another day for most, but for 16-year-old high school junior Dylan Lawrence, it would be a day he and his family would never forget.
For weeks, Dylan had been experiencing odd symptoms. He was having trouble with his vision, and his balance and sense of spatial navigation were affected. His mom, Susan Lawrence, took him to the doctor after he started throwing up without a fever.
The urgent care center was unable to provide answers, so Susan took Dylan to Vanderbilt Children’s Hospital emergency room, where they conducted an MRI for Dylan to see if something else might be going on.
“It wasn’t five minutes after he finished the MRI and came back to the room that the doctor was in the room, and pulled up the MRI pictures and showed us the mass,” Susan said.
The doctors came back with a diagnosis that sent a shock through the family: Dylan had a diffuse intrinsic pontine glioma (DIPG) tumor, or as Dylan has humorously named it, Ezekiel.
“It sounded cool,” Dylan said when asked why he chose that particular name.
“Ezekiel” is an inoperable tumor that grows in the brain stem. As of now, there is no cure for this type of cancer and a zero percent survival rate. Doctors told the family Dylan’s prognosis at best, with mitigating radiation treatments, is less than a year.
“I can’t fix this. I can’t heal him – but I can spend the next few months doing everything in my power to fill his life with joy and laughter and adventure. When he’s gone, I’ll spend the rest of my life honoring his legacy,” Susan wrote in a statement to Clarksville Now.
Dylan’s dreams
When he was 3 years old, Dylan fell in love with sea turtles.
“I was at a fair with Florida Mom, and one of her friends won a sea turtle stuffed animal, and I was like, ‘That’s mine now,’ and I stole it. Since then, I’ve been in love with them. I’ve done so many school projects on them, and I have a tattoo now,” Dylan said with enthusiasm.
He lives in Clarksville with his bonus-mom Susan, his dad and three younger siblings. His mom Heather lives in Florida. After the diagnosis, Dylan, Susan and his dad all got matching sea turtle tattoos together on their wrists.
His love of sea turtles shaped his career aspirations, too, and he had taken an interest in an undergraduate biology program at the University of North Carolina. He had even thought about pursing graduate studies in veterinary science.
“I was planning on going to vet school, to be an aquatic veterinarian,” Dylan said.
The family is planning a trip for Dylan to Hawaii to see the sea turtles. They also have a trip planned for Las Vegas, and both trips are funded by a GoFundMe called Dreams For Dylan, which was started by Lawrence family friends Jody and Melissa Alberd.
“He doesn’t have enough time to change the whole world for the better, but he is doing everything he can to change the world around him,” the pair said of starting their GoFundMe.
In addition to traveling to see the sea turtles, Dylan wants to see New York City, Florida, Colorado, Japan, and take a road-trip up the west coast before the illness progresses to where he is unable to travel.
“I want to live it up, dude,” Dylan told Clarksville Now.
When he’s not receiving radiation treatments at Vanderbilt’s Ingram Cancer Center, Dylan plays video games with his siblings, and he plays music. In fact, Dylan plays six instruments, most of which he taught himself to play.
“It’s something I’ve always felt very passionate about, and something that I want to give to other people,” Dylan said.
He enrolled in band at Richview Middle School when he was in the 6th grade, and “took to it like a fish to water, or a turtle to water,” Susan said. He was in line to be band commander at Montgomery Central High School this year, but the pandemic derailed that when extracurricular events felt unsafe to the Lawrence family.
Dylan is passionate about his academics, and he excelled in the face of learning remotely due to the pandemic. On his last report card for the fall of junior year, Dylan received all A’s and one B.
“I’m kind of a good student, I guess,” Dylan said with piercing sarcasm and an eye roll.
Hopes for others
Susan told Clarksville Now that since he was little, Dylan has been helpful and considerate of others more than he was of himself.
“A few weeks before Christmas, right before he got sick, he asked if he could have his Christmas money early. He said he felt so grateful that he has a nice home and nice things, and he wanted to help make that happen for a kid who might not have a great Christmas otherwise. He got money from his parents and grandparents, and he spent more than $100 on Legos and body wash (items requested by the Salvation Army because all the Angel Tree tags had been taken),” Susan wrote in a statement.
He donated the items, and even in the face of his diagnosis, still has plans to help others after he’s gone, including sharing some words we could all live by.
“I don’t want people to limit themselves. I feel like a lot of people that have dreams or aspirations just don’t chase after them. There’s so much potential in every person you see. Don’t do anything stupid obviously, but if you have a dream, why not go for it?” Dylan said.
“I think if I had taken more opportunities, I could have gotten really good at (playing) tuba, I mean I could’ve done a whole lot of things. I feel like there’s a lot of untapped potential in every single individual, and why not embrace that? Make your life your own,” Dylan continued.
Even with the end of his life on the horizon, Dylan said he doesn’t fear death, but he does fear his life being pointless.
“Part of the Dreams for Dylan and the GoFundMe is so that he can have adventure, but when Dylan is gone, he wants to provide musical instruments and art supplies, things with the creative arts, to kids with cancer, to give them a way to process their emotions,” Susan said.
Starting a foundation in Dylan’s name for that cause with the funds that are left over from the donations for Dreams for Dylan GoFundMe will be Susan’s mission in life after Dylan.
“I have a crazy, awesome family. No matter what I say, I could never be thankful enough. I love them so much,” Dylan said.
Fulfilling those dreams
In addition to the GoFundMe, the owners of King’s Bluff Brewery will be hosting events and fundraisers for Dreams for Dylan beginning on Feb. 1.
During the first half of February, you can pay $5 to cast a vote to determine a beard style for the King’s Bluff Beer Lord. For the second half of February, KBB will conduct an auction to win a brewing session. All proceeds from both of these events will be donated to the Dreams for Dylan fundraiser.
Additionally, during the brewery’s Ale-truism month, $1 from a select pint will be donated to Dreams for Dylan. The pint changes weekly.
KBB is partnering with Studio Sharp, Altra Federal Credit Union, and other community partners to raise more donations.
The Lawrence family is also selling Dreams for Dylan T-shirts for $25 plus $5 shipping. They can be picked up locally, or can be ordered by emailing dreamsfordylan@yahoo.com or on the Dreams for Dylan Facebook page.
“(Dylan) has been incredibly brave and accepting. We look for the positive every day, and we find gratitude,” Susan said.
Angela Peterson contributed to this reporting.