CLARKSVILLE, TN (CLARKSVILLE NOW) – Clarksville teen Dylan Lawrence passed away Friday evening after a six-month battle with DIPG, or diffuse intrinsic pontine glioma, a rare and inoperable brain tumor with no cure and a zero percent survival rate.
The 17-year-old was sedated for the last three days of his life, and when he finally died, his family said they felt relief that his suffering was over. His final days had been “horrifying,” according to his mother Susan Lawrence.
The experience has given Susan a renewed purpose in Dylan’s absence: advocating for the right to death with dignity.
Bucket list
When Clarksville Now spoke with Dylan in January, he had big plans for the time he had left.
“I want to live it up, dude,” he said. And did he ever.
In February, Dylan saw sea turtles in Hawaii. In March, he looked out over the plateaus and cliffs at the Grand Canyon. In April, he spent a week in Disney World with his family.
In May, Dylan was set to take part in a CAR T-cell trial at Stanford University’s medical center in Palo Alto, California. The trial was for a new therapy that might have helped slow the progression of DIPG.
His first infusion date was set to be June 22, but instead, that was the day he started end-of-life sedation.
Deciding on goodbyes
At the beginning of June, his DIPG symptoms began progressing again: nausea, headache, difficulty swallowing, fatigue and slurred speech.
Particularly, the left side of his body weakened, and by mid-June, he would need the highest possible dose of steroids to try to get the symptoms under control. The Stanford trial start date was delayed.
After a week of the steroids and not seeing improvement, Dylan decided he was ready to go. He moved up his end-of-life care date to Tuesday, June 22.
With the help of his family, Dylan left a note on his iPad:
As I steadily approach the end of the tunnel, there’s some things I need to say.
I want to thank anyone who’s gone out of their way to say they are praying or thinking of me. It never failed to make me feel loved.
Secondly, anyone who wished for my recovery, I thank you. I’m so honored to have been part of this community.
Thank you for making it great.
Goodbye,
Dylan Lawrence
After saying goodbye to his siblings, parents, grandparents and close friends, Dylan underwent sedation at 9 p.m. Susan said he was ready, and the family began the long haul of sitting, waiting and wondering when their son would move on from this life to the next.
Finding meaning in death
Susan said the way Dylan’s life ended was not at all what he wanted.
“I’m angry that assisted suicide is illegal,” Susan posted to the Dreams for Dylan Facebook page early Friday morning. “I promise, if the lawmakers who decide these things had been present for the last 52 hours and 24 minutes, things would change.”
“It’s horrifying information, but I believe every part of Dylan’s journey has the ability to make an impact, and this definitely had an impact on us,” Susan told Clarksville Now.
She shared a video of Dylan to the Facebook page shortly before he passed on Friday. It showed him taking short, gasping breaths of air. Since Wednesday, there had been long pauses between Dylan’s breaths.
“I am sharing this because, as horrific as it is, this is Dylan’s journey, and I promised him that I would make sure his life had meaning; his struggle to die has meaning too.”
VIDEO: Dylan’s final moments. Note, disturbing content.
“There is no dignity in this. There is no mercy and no grace, only horrified agony shared between his parents,” Susan wrote. “The right to die is a personal choice. I would give anything to help Dylan die right now, but it’s not legal in Tennessee.
“We understand that this video is not for everyone to watch – but if you can bear it, we ask that you watch it in Dylan’s honor and become advocates with us for the right to die,” she continued.
Dylan died Friday afternoon, just after meeting the average life expectancy with a DIPG diagnosis, which is six to 10 months. Dylan lived for six months and nine days after diagnosis.
Celebration of life
A celebration of Dylan’s life will be held on Saturday, July 10, and will begin with a procession at 4 p.m. from Neal-Tarpley-Parchman Funeral Home in Clarksville. No service will be conducted at the funeral home, and the family has asked that attendees line up cars to proceed to private property in Sango, where the celebration will take place.
After arrival in Sango, Dylan’s celebration of life will take place. There will be a brief memorial service, followed by “The Worst Party Ever,” in accordance with Dylan’s wishes.
In lieu of flowers, the family has asked that folks donate to Dylan’s GoFundMe, so they can continue to help send good into the world in Dylan’s name. If you’d like to join or support the Lawrence family in advocating for death with dignity, please email dreamsfordylan@yahoo.com.