Our team at the ChadTough Defeat DIPG Foundation can often be heard saying, “Once we find a cure for the worst, there, too, will be a cure for the rest.”
Brain cancer is now the leading cause of cancer-related deaths in children. And while DIPG (diffuse intrinsic midline glioma) is considered rare, it is the very worst kind of brain cancer and responsible for nearly half of those deaths. For this reason, our mission to fund the most promising research on DIPG is also offering real hope to families with other forms of brain cancer. This is the case with our Family Partner, the Thompson family, and our brain cancer hero, Emma.
At just 13 months old, Emma Thompson was diagnosed with anaplastic ependymoma – another “rare” form of brain cancer.
Learning their baby had cancer was something the Thompsons will never forget. “We were in complete disbelief that something like this could happen,” said Emma’s mom, Kelli. “I just remember running down the hall trying to find Emma, who was on her way back from the MRI. Once I had her in my arms again, I began to really comprehend what was happening.”
Emma had emergency brain surgery at C.S. Mott Children’s Hospital, where her tumor was successfully removed. Following the surgery, she underwent six months of chemotherapy.
Just as Emma finished her treatments, news broke that Chad Carr had been diagnosed with brain cancer. Emma’s parents, Kelli and Shawn, immediately realized an eerie commonality. Both children’s fathers played football under Lloyd Carr for the Michigan Wolverines. In fact, Coach Carr had visited Emma in the hospital several times while she was an inpatient receiving her chemo treatments, months before Chad was even diagnosed.
The same year, the Thompson family attended the very first RunTough event, where Kelli and Tammi Carr, Chad’s mom, finally met in person and developed a friendship over the years that followed.
“We have been amazed by the strides that have been made in pediatric brain cancer research over the last few years thanks to the incredible efforts of the ChadTough Defeat DIPG Foundation. DIPG is the deadliest form of brain cancer, so any advancements in treatment of this specific tumor will help all other forms of pediatric brain cancer,” said Kelli.
4 years later, in 2018, the Thompsons again received devastating news — Emma’s cancer had returned. Still, Emma fought hard, and after successful brain surgery, followed by 33 rounds of radiation therapy, Emma defeated her cancer once again.
This year Emma celebrated her 9th birthday (4 years cancer free) and enjoyed an amazing year of third grade, playing basketball and making memories with her friends and family.
Still, the Thompson family are continuously haunted by the fact that Emma’s tumor could return at any time, unless a cure is discovered. Anaplastic ependymoma has a very high chance of recurrence. Because of this, for the last 8 years, Emma’s brain must be scanned every 4 months for signs of a relapse. Last year, Emma decided she wanted to undergo the scans without sedation.
That means, every 4 months, Emma must lie perfectly still for 45 minutes, her head held tightly down on the table, while the MRI machine scans her brain.
On March 22nd, the Thompsons were particularly anxious as they awaited the results of Emma’s scan as it was nearly the four year anniversary of the last time her tumor advanced. As Emma has gotten older, the gravity of the meaning behind the scans has begun to affect her. And while Kelli says her daughter handles the process much better than she does, the anxiety of a tumor recurrence has begun to cause Emma stress.
“This time around, hearing the oncologist say that Emma’s scan was clear hit a bit differently. It wasn’t just a huge relief for me and Shawn; it finally gave Emma some peace,” said Kelli.
“It’s foundations like ChadTough and families that have experienced it firsthand that are actually raising the money and putting their own money toward research,” said Kelli. “It gives us so much hope that one day Emma will be completely cured. Until then, we will continue to live our lives to the fullest every day.”