AUGUSTA, Ga. (AP) — Alex Dexter never saw his second birthday, but his legacy could help bring a life-saving therapy to Augusta all while comforting other families battling cancer and serious illness.
Dr. Erin and Chris Dexter created the AlexStrong Foundation in honor of their infant son, who died last year from cancer. They are using their fundraising efforts this month, such as a recent walk and butterfly release, to help bring about a pediatric bone marrow transplant program at Children’s Hospital of Georgia, where Alex was treated.
Their fifth child, Alex was born on Oct. 9, 2018 and appeared to be healthy. Then at 10½ months old, his belly swelled and his father rushed him to the Emergency Department at Children’s. There was a large tumor on his kidney called a neuroblastoma. Alex would undergo rounds of chemotherapy and then surgery early in 2020 and everything seemed to be going well for him to receive bone marrow transplants in Atlanta. But a late scan found evidence the cancer was lingering, making him ineligible for the transplant.
“We were devastated to say the least,” said Erin Dexter, an assistant professor in the Department of Psychiatry and Health Behavior at Augusta University. Alex didn’t look or act as if he were ill, she said. But a CT scan of his head revealed he had what is referred to as “sugarcoating,” which she described as, “meaning the entire spinal cord running up and down was just cancer cells surrounding the cord and the brain.”
The family had planned to take him to Memorial Sloan Kettering for treatment but COVID-19 prevented them.
“They could not accept anybody because of what was happening,” Erin Dexter said. The hospital was able to provide treatment guidance that seemed to help, however.
The family tried an incredibly toxic chemotherapy regimen that appeared to knock down the cancer, Chris Dexter said.
“We saw some progress,” he said. “We were ecstatic.”
But it would not last, and eventually Alex was back at Children’s, where another CT scan held grim news.
Alex’s neurologist “said she’s never seen a tumor progression this rapid,” Erin Dexter said. The doctor said he had days to live, maybe weeks.
They made the decision to stop his treatment and bring him home.
“In my mind, he wasn’t in a condition to fight any longer,” Chris Dexter said.
About a month later, Alex died. But his mother said that time with his family seemed to help his brothers and sister deal with his death.
“Having that month where everybody was home and able to watch the slow progression kind of helped them process it as it was coming,” she said.
It was also the time they started seriously thinking about a foundation in Alex’s name.
“We were accepting so much help from our community, our family, our friends, online communities,” Erin Dexter said. “We said, when we’re past this, we’ve got to pay it forward.”
They were members of St. Mary on the Hill Catholic Church and its school, which has rallied around other parish families facing pediatric cancer in the past.
“I think because our community had unfortunately seen this before, they knew some of the things that were going to be most helpful to us,” Erin Dexter said. “People really just stormed in and did all of these things I couldn’t have even begun to think about.”
They were already good friends with Joey and Mary Anna Hamilton, whose son Henry has been in and out of the hospital for heart surgeries.
“They kind of swept in and were like, ‘They need this, this and this,’” Chris Dexter said. “Friends from there organized things and started helping out.”
Similarly, the Dexter’s initially focused their foundation on finding things to help make life easier for families enduring a long hospital stay, such as playmats for infants and toddlers to play on in the room.
“We provide a lot of art supplies, a lot of things to entertain the kids,” Chris Dexter said, such as the I SPY children’s books. But for the parents, they focused on a very important commodity: coffee.
“Coffee was really one of the things we wanted to get to the families because when you are stuck in a hospital, there’s no good coffee around,” Chris Dexter said. “You can have the worst day ever and then you have that cup of coffee and you’re like, OK, what do we need to do?”
They partnered with a company in Oregon to provide the beans and got AeroPress to donate French press-style coffee makers that parents can use when they need it.
But this month, they want to support the establishment of the pediatric bone marrow transplant program.
“If we are able to get a (pediatric) bone marrow transplant program here, families don’t have to travel (to Atlanta) and they can spend more quality time together,” Chris Dexter said. With some families like theirs, it might not be possible for older children or both parents to travel to the remote site for the weeks or months that might be needed and families could be split up for a long time, Erin Dexter said. They would like to help Augusta families avoid that.
“That’s one of the things we look back on and say (that) anything that anyone did for us so we could just focus on our family, and Alex was the most meaningful because we got the most out of the time we had,” Erin Dexter said.