Yesterday (Mon., Nov. 28), Lloyd Carr was a guest on The Mitch Albom Show to talk about the one-year anniversary of Chad’s passing, the ChadTough Foundation’s $1.5 million commitment to C.S. Mott Children’s Hospital, and the monster that is Diffuse Intrinsic Pontine Glioma, or DIPG.
Mitch Albom has had his own experience with the disease, providing insight into what it’s like to seek treatment options for a loved one with DIPG.
“I’m dealing with this in my own life and you’ve dealt with it in Chad,” he said. “What happens is, there’s just no place to go. You keep looking around saying, ‘Well there must be somebody.’ Well, there’s isn’t. ‘What about this study?’ ‘Well, it’s not open to kids.’ ‘Well, what about this one?’ ‘No, they’re not really accepting DIPG.’ ‘What about this?’ ‘Well, that’s not done in the United States.’
“I’m currently going to Europe. I’m leaving tonight to have to try to get treatment in my particular case because it’s not available in the United States. So hopefully the money that you’ll be able to raise will break down some of those barriers.”
It’s a tragic reality for families fighting for their children, not just because the disease is so vicious, but because treatment options are nonexistent. The standard protocol for children with DIPG is to go through radiation for a so-called “honeymoon period.” All that means is that the tumor shrinks to alleviate the symptoms, but doesn’t go away. Then when it comes back, it comes back with a vengeance.
“To watch that disease what (DIPG) does, you’ll never watch somebody go through it and not feel like you have to try to do something to find a way to heal that disease,” said Lloyd. “We all know there’s plenty of other situations in our history, our medical history, where things look out of control and somebody came along with money or somebody did some research that took years and years and years, but they’ve been successful in a lot of those diseases.
“We’re really confident we can bring people here, we can get the right team that can make sure that in the future, when parents take a kid and that kid is diagnosed with DIPG, they don’t send them home and say, ‘You know, we can’t do anything.’
“They’re going to be able to say, ‘We’re going to be able to deal with this.'”
Listen to the full interview: