3 kids with brain cancer unite 3 Michigan football families

Three children were diagnosed with brain cancer in a year and a half. They shared one striking commonality: Their fathers all played football for the University of Michigan in the 1990s.

The most well known was Chad Carr, who died in 2015 from a rare and fatal form of pediatric brain cancer known as diffuse intrinsic pontine glioma, or DIPG. He was 5 years old. His father, Jason Carr, played quarterback in the early '90s.

Emma Thompson, 5, is now undergoing treatment for a recurrence of an ependymoma brain tumor that first appeared when she was just 12 months old. Her dad, Shawn Thompson, was a U-M tight end.

And Colt Del Verne, like Chad, has DIPG. At age 10, Colt already is a cancer survivor; he was treated in 2012 for medulloblastoma, the most common type of malignant brain cancer in children. His father, Jeff Del Verne, was a U-M kicker.

"It really is profound, and we’ve talked about that a lot over the years," said Shannon Del Verne, Colt's mother. "It seems strange that there would be three families that were all relatively within the same era of Michigan football. It seems like more than a coincidence to me."

Tammi Carr, who runs the ChadTough Foundation in her late son's honor to raise money for pediatric brain cancer research, agreed.

"It’s mind-blowing," she said. "These three kids, they have a job to do, and unfortunately, we know what it is. We’re forever going to be fighting this together. We are all definitely entwined as family beyond just Michigan football now."

Together, they are working to build awareness for pediatric brain cancer and to raise money for research aimed at finding new treatments so other children faced with similar diagnoses have the promise of a better future.

All three families are supporting the ChadTough Foundation as it plans its Dancing with the Michigan Stars event in conjunction with Arthur Murray Dance Centers. Emma's parents — Kelli and Shawn Thompson — will be among the local celebrities competing in the dance-off. The event — set for 6 p.m. Thursday at the Eagle Crest Resort in Ypsilanti — will raise money for research into new treatments and maybe one day, a cure.

"Once you get into the pediatric cancer world, you realize how little funding there is that actually goes into any type of research for these cancers," Kelli Thompson said. "It’s appalling that less than 4% of federal funding actually goes into pediatric cancer research. It’s foundations like ChadTough and families that have experienced it firsthand that are actually raising the money and putting their money toward research."

Those research dollars already are making a difference.

Colt was able to have a biopsy of his DIPG tumor in early December — science that wasn't available when Chad was diagnosed in 2014.

DNA sequencing of Colt's tumor uncovered a genetic mutation called PIK3CA, which has been treated successfully in other cancers with a drug called Afinitor, also known by the generic name everolimus.

"It felt like we were sucker-punched when we found out Colt has DIPG," Shannon Del Verne said. "We know the Carrs and we know a lot of families that have battled DIPG, and the odds are not good. That was just devastating for us."

But being able to have Colt's cancer sequenced and discovering a targeted therapy has given the family hope. Colt had radiation therapy, and will take everolimus at least until May.

"Radiation shrinks the tumor, but everolimus stops the growth," Shannon Del Verne said.

Tammi Carr was thrilled when she learned that advances in DIPG research over the last three years have given Colt and the Del Verne family some options her family didn't have when Chad was fighting cancer.

"When we heard that Colt was diagnosed with DIPG, we were crushed," she said. "We sort of felt like because the Del Vernes had been so familiar with Chad’s story — they had been right there with us — that we might have taken away some of their hope; they were so familiar with the disease.

"And so when we realized that they had hope, that there is a treatment, it was just a huge, huge thing for us. And you, know, that is what we consider Chad’s legacy to be. It wasn’t there for Chad, but it will be for other kids."

There's hope for Emma and the Thompson family, too.

A surgeon at the University of Michigan's C.S. Mott Children's Hospital removed her ependymoma tumor in an eight-hour surgery last week.

She came home from the hospital Monday, and has "done extraordinarily well," Kelli Thompson said, noting that Emma's surgeon was able to remove the entire tumor along with an additional layer of tissue to take out any residual cancer cells. "It was a rough recovery for a few days, but she's amazing.

"There is no nerve damage. She has a little bit of drooping on the left side, but it's minimal and it'll get better. ... It's a complete miracle."

Emma will undergo targeted proton radiation of her brain in April.

"Our hope is that with the full resection, and removal of the full tumor and this radiation therapy, that this is the final cure for her," Kelli Thompson said.

The ChadTough Foundation approached the Thompsons about taking part in Dancing with the Michigan Stars in January, before they knew Emma's cancer had recurred. They committed, and are struck now by the timing of it all.

"The foundation and the funds raised mean even more to us now," Kelli Thompson said. "More than anything, we want the awareness there for all families that are going through this, that have been affected by this."

Dr. Carl Koschmann, a pediatric oncologist at U-M's C.S. Mott Children's Hospital, said it's difficult to pinpoint a connection to the brain cancers in the children of these former football players — or in any children, for that matter — because there are so few cases in any given year.

Still, he has spoken with a state health investigator about a rise in the number of children who've recently been diagnosed with DIPG.

"Not just in the football player population, but in general, we have seen a huge bump in the number of DIPG cases in the last couple of years," he said. "We see one to two in a year historically; it’s a rare tumor. In the last couple years now, it has been closer to eight to 10 a year."

Some of that increase can be attributed to the University of Michigan's notoriety as a leader in DIPG research and Michigan Medicine's Pediatric Brain Tumor Research Initiative, which draws patients from all over the country to get treatment in Ann Arbor. But that doesn't account for all of it.

"It is still way higher than baseline," he said.

Tammi Carr noted that in the three years that have passed since Chad died, the science of treating pediatric brain cancer has made tremendous strides because of the research Koschmann and others are doing.

"People ask me, 'What are the big breakthroughs?' And I tell people, 'I always want them to remember that this is a marathon, not a sprint.' To find a cure for this in our lifetime is going to be a wonderful, wonderful thing. It’s not going to happen tomorrow. It’s going to take people sticking with us for a long time.

"It's important. You never know when it’s going to impact you personally. None of the three of us, would ever have thought something like this would happen to us," said Tammi Carr. "Three of us, three dads who played for the same program, all dealing with this. It is everywhere and it can happen to anyone, and so everyone needs to care."

If you go

Dancing with the Michigan Stars takes place 6-10 p.m. Thursday at the Eagle Crest Resort in Ypsilanti. Proceeds will benefit the ChadTough Foundation. For tickets or details, call 734-995-9500 or go to dancingwiththemichiganstars.org.

Among the competitors in this third annual event are Kelli and Shawn Thompson, as well as U-M defensive lineman Chase Winovich, U-M head baseball coach Erik Bakich, WDIV-TV (Channel 4) sports anchor Jamie Edmonds, and former NFL and U-M football player Ron Bellamy, who now is head football coach at West Bloomfield High School.

To donate, go to: crowdrise.com/dwtms