“Your child has brain cancer.”
There are no words more terrifying. These are the initiation words to the pediatric cancer club that no family wants to be part of. Yet, 13 families across the United States receive this devastating news every day.
Five years ago today, Tammi and Jason Carr were living a normal life, delighting in the joyful chaos of raising three young boys. They had no idea their lives would take a sharp turn down an unthinkable path. Later that day, their youngest son, Chad, was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG), an inoperable brain tumor. They were told the average survival rate was nine to twelve months.
At that time, neither Tammi nor most of the world for that matter, had ever heard of DIPG. This form of brain cancer had been killing precious children for decades, but there was literally no awareness.
No awareness. No funding. No progress.
Imagine being told your child has only months to live, then learning that only 4% of government funding goes toward pediatric cancer research (with only 1% to pediatric brain cancer research).
Hearing these dismal statistics, Tammi took to social media and did the one thing she had the power to do. She asked for prayers. In a Facebook post Tammi wrote, “We now need prayers, and it’s my hope that this goes viral and millions fall in love with my little man and send him prayers. Not just for Chad, but for all kids fighting cancer.”
By the end of the week, #ChadTough was trending nationally and 5-year-old Chad had unwittingly started a movement. While many people knew of Chad’s beloved grandfather, former University of Michigan football coach Lloyd Carr, it was Tammi’s raw, emotional posts that ripped open the hearts of people around the world.
As support began to pour in, it became evident that Chad’s story was creating an awareness about DIPG that had never before existed. Just months after his diagnosis, the family started The ChadTough Foundation with a mission to “inspire and fund game-changing research to discover effective treatments for pediatric brain cancer, with an emphasis on DIPG.”
Chad lost his battle to DIPG in November of 2015, but the miracle that Tammi had ask for seemed to be taking on a new shape. The awareness ChadTough brought to DIPG was generating dollars; and those dollars were beginning to create change.
By 2017, the ChadTough Foundation had granted nearly $3 million to the research of pediatric brain cancer. After decades of no change in the standard of care, researchers were beginning to gain new insight into the genetic mutations that drive DIPG. “When Chad was diagnosed in 2014, we really could just see images of the tumor on the screen and maybe try a clinical trial,” said Dr. Carl Koschmann, a pediatric oncologist at C.S. Mott Children’s Hospital, part of Michigan Medicine in Ann Arbor. “While biopsies had previously been considered dangerous, new, safer techniques started to emerge and we are able to learn more about the uniqueness of each tumor,” said Dr. Koschmann.
In November 2017, after a six-year remission from a different type of brain cancer, 10-year-old Colt DelVerne was diagnosed with DIPG. His parents were told he had just one to three months to live. “It was one of the most devastating days of my life,” said Colt’s mom Shannon. “We were told we should probably just go on vacation and enjoy what little time we had left with him.”
Shortly after Colt’s diagnosis, the family sat down with Dr. Hugh Garton of C.S. Mott Children’s Hospital. He shared that they could now perform a new biopsy technique that could genetically sequence Colt’s tumor. This type of biopsy, which hadn’t been available in 2014 when Chad was diagnosed, would help doctors better understand Colt’s tumor and learn how to treat the specific mutation.
The biopsy allowed doctors to offer a treatment specific to Colt’s tumor, which allowed him to live nine months longer than doctors originally expected. “Nine months of a lot of great memories,” said Shannon DelVerne. “Joy, laughter, hugs, smiles and ‘I Love You’s’ that wouldn’t have happened without the impact The ChadTough Foundation created.”
When 15-year-old Sophie Varney was diagnosed with DIPG in late December 2018, her mom Kim immediately recalled reading about Chad Carr’s journey. “We were absolutely shocked and devastated. It was right before the holidays and everything just stopped. For two weeks, I could barely get out of bed,” said Kim.
Like many DIPG kids, Sophie is a fighter. “She really drove this attitude in our family that we had to keep moving forward and fight this thing as hard as we can.”
Sophie qualified for a clinical trial at Michigan Medicine that is only available at four hospitals in the nation. She’s been able to continue with her normal school schedule, visit Ann Arbor for her treatment, then get home in time for dinner. “Sophie is doing really well right now and, because of the progress that researchers are making, we have hope that we didn’t have at first.”
The Varney family believes that this clinical trial would not be available in Michigan had it not been for the awareness that ChadTough has created. “Without them, none of this research would have started,” said Kim.
After decades of little to no progress, researchers are now making new discoveries almost on a monthly basis. Government funding for pediatric cancer is still minuscule, so “the majority of the funds for research are now coming from family foundations like ChadTough,” said Dr. Koschmann. “It’s a very different model of research. If you talk to the researchers in my lab, they know we’re in direct communication with the families, and it drives them. They work harder, they stay longer.”
Dr. Michelle Monje from Stanford Medicine recently published some groundbreaking work from her lab that is opening up new thinking about DIPG. “Over the last five years, I think we’ve made more progress as a field than we had in the previous 50 (years). And it’s just been incredibly exciting to be part of what I think has been an exponential increase in our knowledge about this disease that I really hope in the next five years are going to result in some effective therapies for this terrible cancer.”
What Can One Person Do? Change the world!
For Tammi, the knowledge that Chad’s life continues to make a difference is what keeps her going. “I know there was a reason this happened to us. Chad’s life is changing the world and we will find a cure.” Chad has inspired thousands to fight for DIPG. People who had no knowledge of this lethal pediatric brain cancer have volunteered, donated, hosted fundraisers, sponsored or attended events, and most importantly, told others about the type of cancer responsible for 15% of ALL pediatric cancer deaths. And now, ChadTough has DIPG Family Partners joining in our efforts to change the outcome for future families facing this devastating diagnosis. Tommy, Colt and Julian are right beside Chad, inspiring this movement we call #ChadTough!
To date, The ChadTough Foundation has raised more than $9 million for pediatric brain cancer research.