It was a day in June when Connie Jones received a call from her Ask Services company president, Lael Bryant.
“He wanted to know if I knew about the ChadTough Foundation,” recalls Connie.
Connie’s son, Carter, was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG) in March 2013 at five years old. He passed away six months later on Sept. 16, 2013.
“They’ve been so supportive and amazing through this whole journey,” said Connie. “He asked if I would be interested in getting involved in RunTough to do something in remembrance of Carter.”
Connie was thrilled with the idea.
So, on Sat, Sept. 29, a group of Ask Services employees and families will gather in Saline to honor Carter Jones and support DIPG research and awareness with a handful honoring Carter as virtual runners in other parts of Michigan and in Indiana.
“I’ve been wanting to do something as time has gone by,” said Connie. “Maybe because it never becomes better, but it becomes different.
“People ask, is it easier? No, it just changes. There’s not a day that goes by that you don’t think about them. Certain days are just harder than others.”
With RunTough taking place the same month that Carter passed away, Connie saw it as the perfect opportunity.
“It was meant to be.”
The Toughest Day
Carter was getting ready for preschool on the morning of March 20, 2013 when Connie noticed he was having trouble putting on his clothes and shoes.
“He just seemed off,” she remembers. “I asked the teacher to keep an eye on him for me.”
By the end of the day, the teacher confirmed Connie’s suspicions that something wasn’t right. She took him to the on-call doctor at her son’s pediatrician, who told her it was viral and not to worry.
“As the day kept progressing, though, I’m just looking at him and something is off,” says Connie. “I felt like I needed to take him to get a different opinion.”
She took Carter to Urgent Care. The doctor took one look at him and told Connie not to panic, but that she was sending them to C.S. Mott Children’s Hospital in an ambulance.
By that time, Carter’s mouth had already begun to droop.
After hours in the emergency room, Connie and James Jones received the worst possible news. DIPG.
“Your heart just drops,” said Connie.
The Jones family opted to stay in the hospital to begin treatment right away. Once that concluded, the family went on a Make-A-Wish trip.
“He wanted to swim with the dolphins,” said Connie. “So we did Discovery Cove and Animal Kingdom and Sea World. He got to swim with the dolphins and he said it was the best thing ever.
“He enjoyed it, but the hardest part was watching DIPG just take him further and further away every day. But he kept smiling the whole time.”
Carter Daniel Jones was born Valentine’s Day 2008 to Connie and James Jones. He grew into a spunky, sassy, outgoing child who loved super heroes and sports.
“He kept Mommy on her toes,” recalls Connie. “He just loved life and loved everybody. He was always smiling and always making other people smile.”
Carter also loved his big brother, Landon, who was three years older. He wanted to do whatever Landon was doing, whether it was playing Legos or getting into trouble.
“We could never scold Landon because nobody was allowed to be mad at him except for Carter,” laughed Connie. “He always called him the best big brother ever. It was very cute. They had a very unique bond.”
Landon, now 13, remembers Carter with his parents and his youngest brother, Luke, who never got to meet him.
“Luke looks just like Carter at five – they could be twins,” said Connie. “He acts just like him, too, which we think is hilarious. God sent a little bit of Carter back to us in his little brother for sure.”
Luke knows all about Carter because the family has pictures of him displayed throughout the house and reminds him that his big brother is in heaven watching over him.
“We always tell him he looks like his big brother,” said Connie. “We’ve got stuff that he’s received that used to be his.
“Then we do things on Carter’s birthday every year – we go down to Mott Children’s Hospital and we give out Valentine’s Day bags for the kids on the 7th floor and cookies and cupcakes for the doctors and nurses.”
For the Jones family, Carter is still very much a part of their everyday lives.
“There’s not a day that goes by – often not an hour that goes by because there’s usually something that reminds you of them,” said Connie. “He still makes us smile.”
Proud ChadTough Champions
The Jones Family will proudly represent Carter at this year’s RunTough for ChadTough event in Saline, looking forward to participating in a cause to raise money for pediatric brain tumor research.
“I’m thankful for people like Tammi’s family and this foundation and what they do because I don’t know how they do it and talk about it,” said Connie. “I love talking about Carter, but talking about what he went through … it’s just hard.
“It makes you sick to your stomach the fact that any child has to go through that.”
Connie is also thankful for the progress being made in recent years to move the needle for DIPG.
“Everything the ChadTough Foundation and the doctors involved have come up with and have been able to do – it’s just amazing,” she said.
“There is finally hope and light at the end of the tunnel.”