Ben Weeks was a teenage athlete who loved being behind a baseball plate and dreamed of becoming a major league player.
When he started feeling lethargic and not quite himself, all of that took a back seat.
Ben Weeks, 17, Patient with liver disease: “My mom noticed some abnormalities with the way I acted, so she took me to the doctor."
Marti Weeks, Ben’s Mom: “Ben spent the summer basically sleeping, all the time. Our pediatrician, not too far into them checking almost weekly on his platelets and white count told us to go to a hematologist there in Lexington."
The hematologist ruled out leukemia, but Ben had an enlarged spleen, mono and other symptoms. They went to more specialists and eventually sought out experts at Cincinnati Children’s.
Here, doctors diagnosed Ben with autoimmune hepatitis. It meant his immune system was attacking his liver cells.
Marti: “It didn’t automatically mean he needed a transplant, but they were pretty sure that that would be the case."
Ben: “I was not allowed to play sports. So, that was a bummer."
He turned to music to get through his medical journey. That included news that he did need a transplant – and a 23-month wait for a liver.
Ben: “Well, I’d been playing drums since I was 7, so I was pretty good."
His parents were both in bands, and their friends helped with fundraisers and support. Their performances helped raise awareness about organ donation and money for Ben’s medical expenses.
James Weeks, Ben's Dad: “We were obviously shell-shocked, right? Because you don’t expect that your kid needs a transplant to live. That’s the last think, I think as a parent, you think that you’re going to encounter. I think the hardest part of this whole thing is waiting, and waiting for that phone call."
One day in April 2020, soon after COVID isolation started, that call came.
Ben: “And then my mom comes in and is like, ‘They found a liver.’ I was like, ‘OK.’ And I ran upstairs, packed my bags and was ready to go within 10 minutes."
James: “I was always trying to find information that would validate that he was going to be OK. But I think when Ben finally got on the transplant list, and we came up here, and we spent, you know, two days talking to everybody – talking about finances and transplant process and all of that. I remember walking out with Dr. Balistreri, and him putting his arm around me and saying, ‘Are you going to be OK, or do you have any questions?’ And I said, ‘Well, I don’t like the odds, you know, I don’t like the idea that with a transplant, you know, that his survival rate isn’t 100 percent.’ And he looked at me, and he said, ‘Well, let me put it a different way to you: Without the transplant, in 10 years, he has a 5 percent chance of living.’ And so I think that’s the moment that it was more than real, right, it just became the number one priority for us.”
Marti: “The level of care here goes beyond just the doctors and what they do. There is just so much extra here.”
James: “I don’t think many parents get to go through this, thank God, right? But, at the same time, it develops a different relationship with your kid. And to see the difference in before and after? Wow, I mean, he’s a different kid. You can’t walk out of that unchanged.”
Ben is not quite back to baseball, but he has his life back. He’ll be a senior in high school and plays in the jazz band and in a classic rock band with his friends.
Ben: “I do want to become a doctor, an anesthesiologist. I just felt it was a good career path, considering my liver transplant.”
Ben’s doctors say he has done so well post-transplant because he is a model patient who is conscientious about following instructions.
Jorge Bezerra, MD, one of Ben’s doctors: “Ben is an exemplary patient. He’s really someone that we call a point of pride for us, in the way that he’s thoughtful, that he uses music to get life going, and very supportive parents.”