Tammi Carr and her husband, Jason, have found multiple ways to keep their 4-year-old son Chad entertained, engaged and upbeat while he has spent the last several months going through radiation and experimental treatments to combat an inoperable brain tumor.
It sounds less threatening as an acronym, Diffuse Intrinsic Pontine Glioma, typically diagnosed in young children.
It is, quite frankly, the worst of the worst.
Lauren Hill, a basketball player from Mount St. Joseph in Cincinnati, had DIPG and became a national inspiration. Hill, who died in April, continued to play basketball through her radiation and chemo. She raised $2.5 million last year for research, just less than the $2.7 million than had been raised for DIPG in the previous seven years.
The Carrs are hoping The ChadTough Foundation (ChadTough.org) will continue to raise awareness and research funding to attack the DIPG tumor, located in a small area of the brain stem. The median survival rate is nine months from diagnosis, and the only known approach for treatment is radiation, which shrinks the tumor and offers temporary relief.
The Carrs are launching a creative fundraiser next week, a 70-home garage sale in their Saline neighborhood, with the majority of proceeds going to the foundation.
Chad Carr is their youngest of three, behind brothers, C.J. and Tommy. His grandfathers have strong ties to Michigan football — Tammi's father, Tom Curtis, was a standout defensive back, and Jason, who played quarterback at Michigan, is the son of longtime Michigan head coach Lloyd Carr.
"We want to be part of fixing this problem," said Tammi Carr, the foundation's primary fundraiser, while her husband is its president. "It's a really bad thing that's happened to our family, but we want to make the best of this. He's four and that's a blessing, because he doesn't really understand it. As long as he's feeling OK, he's OK. We're still praying for our miracle, and we believe miracles happen.
"But it can't just be about Chad. It can't be. We want him to get better. We want him to get his miracle, but we are committed to making sure there's a change so parents don't have to hear, 'There's really nothing we can do.' We're in it for the long haul. We're taking this very seriously. God is sort of telling me what I'm supposed to do the rest of my life. It's a difficult way to learn this."
Chad Carr is on steroids now and has been on an experimental drug treatment. He spent a great deal of time at Memorial Sloan Kettering in New York as part of a clinical trial with Dr. Mark Souweidane, a Metro Detroit native who attended UM as an undergrad and Wayne State for medical school.
During the trial, massive amounts of chemotherapy are infused into the tumor, whose cause is unknown.
Souweidane began DIPG research more than 15 years ago when there was little focus on the disease. Money was not readily available for research and still isn't on the government and pharmaceutical levels.
"The potential for success was worse than the disease itself," Souweidane said.
Progress is being made, he said, because of families like the Carrs, and he believes there will be a cure discovered during his lifetime. He said DIPG research is "powered by families," with about 80 percent of money for research funded by families and foundations. There are 300-350 new cases of PIPG each year.
"We're trying to cure the incurable through family motivation," he said.
But while he and his colleagues measure success in terms of years, it is vastly different for parents who are faced with the dire prognosis he called "universally fatal" once diagnosed.
"I'm often asked why do you gravitate to something like this — it's the ultimate kind of tragedy," Souweidane said. "But you see a level of humanity that's hard to get exposure to anywhere else. You see the parent who loves their child, and will do anything they can to ease the pain for their child, but they're also trying to do that for any other parent."
The Carrs have relied on their faith to help them understand and deal with their reality. Tammi Carr from Day One has asked anyone listening to pray for a miracle for her son, and she has been active on various social media platforms to keep DIPG in the forefront.
There has been national and international coverage of their story. Many individuals are wearing orange "#ChadTough Pray for a Miracle" fundraising rubber wristbands.
The foundation is the next step.
"We want as much good to come out of this as possible," she said. "This is the hardest thing we will ever do in our lives, and that's whether he's with us or not. It is something he will battle as long as he's here."
It takes money to fund research, and the Carrs are raising it the old-fashioned way this week with the massive garage sale.
"Chad loves garage sales. He ... thinks they're fun," Tammi Carr said. "A light bulb went off."
Their friends already have had garage sales for ChadTough in California, Minnesota, and her native Florida, and there was one in Bloomfield Hills last week. But this garage sale kicks off June 4 and will involve 70 homes in the Centennial Park/Centennial Farms neighborhood, and Michigan basketball coach John Beilein will be there for an hour and a half signing autographs for a minimum $50 donation. The garage sale continues June 5-6.
What the Carrs have found is that their foundation and their fight is not just about the Michigan community. Ohio State basketball coach Thad Matta has reached out, and Michigan State has as well. There was a touching moment after last year's Michigan-Michigan State football game when the two bands came together and silently formed "#ChadTough" in his honor.
"This is not about the University of Michigan," Tammi said. "This is about kids everywhere. We are a Michigan family, but this is about more than the Block M. There are kids all over this world, parents who hear the same message we've heard. It's not fair. These kids are little, and they don't have a voice."
ChadTough Garage Sale
Where: Centennial Park & Farms Subdivision, Bicentennial Parkway and Textile Road, Saline.
When: June 4-6:
June 4: 5-8 p.m. Michigan basketball coach John Beilein will be there for an hour and a half signing autographs for a minimum $50 donation
June 5: 9 a.m.-2 p.m.
June 6: 8 a.m.- 2 p.m. Former Michigan basketball player Nik Stauskas will sign autographs from noon-1 p.m.