Three football families in Michigan have bonded over tragedy after their children were diagnosed with brain cancer.
The fathers of Emma Thompson, five, and Colt Del Verne, 10, played the sport for the University of Michigan in the 90s.
Chad Carr, who tragically died in 2015 from a rare and fatal form of brain cancer, was the son of Jason Carr, who also played football for the university nearly 20 years ago.
Colt, after beating one form of brain cancer in 2012, has now been diagnosed with diffuse intrinsic pontine glioma (DIPG), the same tumor Chad had, while Emma suffers from ependymoma, a rare tumor that forms in the tissues of the brain and spinal cord.
Speaking with Daily Mail Online, Jeff Colt Del Verne describes how his son, who was the first to be diagnosed with brain cancer, helped bring these three families together.
Jeff’s son Colt is battling the same form of brain cancer that killed Chad Carr in 2015. Pictured: Colt and his mother Shannon after his radiation treatment in January 2018
Colt was in remission from medulloblastoma for four years before he was diagnosed with DIPG in 2017
‘It’s been a crazy turn of events,’ said Jeff, who played for the University of Michigan from 1996 to 2000. ‘We all had to kind of carry each other.’
Jeff, who currently works for a San Diego-based biotech startup, said he played kicker for the university football team and his teammate was tight end Shawn Thompson, who played from 1997 to 2001.
Since Jason was a few years older than them, he played quarterback from 1991 to 1995, they didn’t get acquainted with him on the football field.
Jason, whose father coached the team, worked in the weight room shortly after eh graduated, and that’s how Jeff met him.
His son Colt is currently battling diffuse intrinsic pontine glioma (DIPG), a rare, aggressive tumor that killed Chad in 2015, while Shawn’s daughter Emma is battling a recurrence of ependymoma, a tumor that forms in the tissues of the brain and spinal cord.
Jeff said he’s can’t believe that the children of three football players who played for the University of Michigan during the same era have been diagnosed with brain cancer.
‘The odds of this happening aren’t very good,’ Jeff said. ‘But it’s difficult to point out a common denominator.’
‘It’s crazy from that standpoint, but having that support group is really therapeutic,’ he added.
His son Colt was the first of the footballers’ children to be diagnosed with brain cancer.
The 40-year-old father-of-four noticed Colt was having issues with his balance and vomiting frequently.
When he and his wife Shannon noticed headache medications weren’t working, they took him to primary care physician who ordered a CAT scan, which found that Colt had a tumor in his brain.
They were heartbroken when, at four years old, Colt was diagnosed with medulloblastoma, the most common type of malignant brain tumor in children, in June 2012.
Jason Carr’s son Chad died in 2015 from DIPG, a rare, inoperable brain tumor that is highly aggressive, difficult to treat
Chad’s mom Tammi Carr (pictured) donated his brain tissue to DIPG research after he died in 2015
Within the same month, doctors removed the tumor, administered radiation and prescribed him chemotherapy for 16 to 18 months. He went into remission in May 2013.
Nearly a year after Colt went into remission, Jason’s son Chad was diagnosed with diffuse intrinsic pontine glioma (DIPG), a rare, inoperable brain tumor that is highly aggressive, difficult to treat, just before his third birthday.
In March 2014, just months, later Shawn’s daughter Emma was diagnosed with stage 3 ependymoma when she was just 12 months old.
Emma’s cancer eventually went into remission after nearly two years of chemo and radiation therapy.
Unfortunately Chad, who underwent 30 rounds of radiation after his diagnosis, died in November 2015, 14 months after he was diagnosed.
DIPG tumors are usually located in the middle of the brain stem, the part of the organ that is connected to the spine and controls breathing and nerves and muscles that help people see, hear, walk, talk and eat, according to St. Jude Children’s Research Hospital.
Only about 10 percent of children with this tumor survive for two years following their diagnosis, and less than 1 percent survive for 5 years.
Chad’s mother Tammi started the ChadTough Foundation shortly after his death to help fund research and raise awareness for pediatric brain tumors, especially DIPG.
Shawn Thompson’s daughter Emma suffered a recurrence of her brain cancer last month
Shortly after his death, Tammi and Jason donated his brain tissue to DIPG research.
Although Colt and Emma’s parents rejoiced when their children went into remission, their happiness was short-lived.
After his cancer went into remission in 2013, Colt went back to living a normal life.
He went skiing on family outings and spent a lot of time playing with his friends and siblings.
However, after a routine follow-up brain scan in November 2017, doctors told Jeff and Shannon that they saw something on the scan that they didn’t like.
They then confirmed that Colt had a different brain cancer, DIPG, the same tumor that killed Chad.
‘I think to say we were devastated is an understatement,’ Jeff said.
‘We had a false sense of security for four years,’ Jeff added. ‘We were very familiar with DIPG when we got the diagnosis [because of Chad], so we knew that it wasn’t good.’
Colt was able to have a biopsy of his DIPG tumor in early December, due to science that wasn’t available when Chad was diagnosed in 2014.
In September 2017, months before Colt was diagnosed with DIPG, scientists released a report that revealed a mutation in a gene known as PTEN – a gene that hasn’t been considered a driver of DIPG in children – plays an early and important role in DIPG’s fatal course.
‘I just want to thank the Carrs,’ Jeff said. ‘Within two years, scientists have made about 30 years worth of medical advances in understanding this tumor.’
Doctors discovered the genetic mutation that caused the disease, and prescribed him chemotherapy that targets that specific mutation.
‘I mean two years ago when people were diagnosed with DIPG… there was really nothing to do,’ he said. ‘You just wait for them to perish.’
Colt was able to have a biopsy of his DIPG tumor in early December, due to science that wasn’t available when Chad was diagnosed in 2014
Colt received radiation for 10 days to shrink the tumor, and is now taking oral chemotherapy to stop the growth of the tumor.
Tammi told the Detroit Free Press that she was thrilled about the advances in DIPG research since her son Chad passed away in 2015.
‘When we heard that Colt was diagnosed with DIPG, we were crushed,’ Tammi said. ‘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.’
And just last month, Emily suffered an ependymoma recurrence.
She recently underwent brain surgery to remove the tumor last week.
Her mother, Kelli Thompson told the Detroit Free Press that surgeons were able to remove the entire tumor along with additional tissue to remove residual cells.
She’s scheduled to undergo targeted proton radiation of her brain in April.
Jeff said the advances made in DIPG research, due to the ChadTough Foundation’s partnership with the University of Michigan, gives him hope.
‘We’re hopeful this research will benefit Colt,’ he said. ‘If not, hopefully it will help another family who is diagnosed with this.’