February 26, 2009 – March 17, 2023
Diagnosed: May 11, 2021
Londyn Buss has always danced to her own tune. Just a few months after her 12th birthday, the sweet, sassy little girl from Nebraska was enjoying all of the things pre-teen girls love; music, performing, and spending time with friends and family. An avid TikToker, Londyn even once had a video go viral as she asked her mom, Jessica, for a new Reborn baby doll.
But in early May, she started having severe headaches and double vision. Jessica knew something was very wrong. However, nothing could have prepared her that day, on May 11, 2021, for her daughter’s DIPG diagnosis.
“The doctors told us there was no treatment, no cure and no survivors for the aggressive, debilitating tumor inside Londyn’s brain,” said Jessica. “I had no words and all hope was ripped out from under me.”
After being told that Londyn likely had just 9 months to live and the best thing to do was go home and make memories, Jessica left the hospital heartbroken, still knowing very little about the disease that threatened to rob her of her daughter.
“Giving up isn’t Londyn’s way,” thought Jessica, “so I have to fight.”.
The single mom looked to the internet for help and found the hope she so desperately needed through other families who had walked her path before.
“These families took me under their wing and helped me get in touch with different doctors. Some of these families have children who are currently fighting, and some have already gone through the pain of losing their child,” said Jessica. “The common thread among all of us is hope.
Londyn began radiation on May 17th, which Jessica quickly learned was DIPG Awareness Day. What are the odds, she thought, that her daughter would start treatment for a disease very few people had ever heard of, on the one day meant to spread its awareness.
Now, six months into her diagnosis, Londyn is doing great and currently enrolled in the ONC201 clinical trial through Dr. Carl Koschmann of Michigan Medicine and her local oncologist, Dr. Mehmet Copur of Morrison Cancer Center.
Throughout their journey, Jessica credits Londyn’s little brother, Tristyn, and her older brother Gage, who’s just 1 year older than Londyn, with keeping the family strong.
“These two siblings have been the strongest two kids I’ve ever met helping in every way possible,” said Jessica. “When your 13 year old son is carrying his sister into radiation because she is too exhausted, that’s when you know you have amazing kids.”
Now, even though the Buss family is in the battle of their lives to save Londyn, they are determined to help other families in Nebraska, who have newly diagnosed children, navigate their own DIPG journeys.
“We aren’t giving up and we are here to help other Nebraska families who hear there is no hope for their child,” said Jessica. “Even when faced with an unimaginable prognosis, these are our children and we have to do better.”