It began as an assignment for one of his classes at the University of Cincinnati.
“We had to come up with a six-word phrase to use in our life,” Ryan Custer said. “Normally, I’d just have written something pretty quick to get the project done.”
But the more he thought about this challenge, the more it intrigued him and after working through his thoughts, he finally had it:
“What’s done is done. Fight on.”
Along with completing his assignment, he’d found a new maxim for his Twitter page.
“I take that phrase seriously,” he said the other day. “It fits with what has happened in my life.”
A basketball standout at Elder High School in Cincinnati and then a budding college player at Wright State, the 6-foot-7 Custer suffered a traumatic spinal cord injury on April 8, 2017 when he jumped into a makeshift swimming pool at an off-campus party at Miami University, hit someone’s knee and landed wrong, shattering his C-5 vertebra.
Just 33 days after he’d played the final game of his freshman season at WSU, he suddenly was paralyzed from the chest down.
Since then he’s fought to regain his life.
He’s battled back though surgeries and therapy at the University of Cincinnati Medical Center and undergone cutting-edge stem cell therapy at Rush University Medical Center in Chicago.
Over the past three basketball seasons, he’s provided end-of-the-bench inspiration to the WSU players who came out of a game and made their way past their sitting teammates, exchanging high-fives and fist bumps, until they got to him in his wheelchair and tapped his hand or traded a quip.
These days he lives back at his family’s Delhi Township home in Cincinnati and will get his undergrad degree from UC next spring. Last year he coached a fifth-grade basketball team and just recently – following wrist surgery – he began driving his Toyota Sienna equipped with hand controls.
Over the summer, he also got a much-longed-for Golden Retriever he named Bentley. Now he needs to find a way to mollify his dad who is none too pleased about the pup’s penchant for digging up the yard and its mulch beds.
While Custer’s daily life gives you a hint of how he lives that six-word axiom, nothing shows you the true “fight on” ordeal quite like the new documentary – “Ending Disease” – that was directed by Emmy-winning filmmaker Joe Gantz and is being released this week.
The four-part series explores how stem cell therapy is being used to treat and heal diseased, injured or non-functioning tissue in people dealing with everything from paralysis and blindness to terminal cancers.
Stem cells have the ability to develop into other cells and that allows them to repair damaged areas of the body. That regenerative approach moves away from chemotherapy, radiation and surgeries and becomes a less toxic, less costly treatment that can be curative.
Gantz followed Custer, nine other patients and their doctors through first generation, FDA-approved clinical trials using stem cells and CAR T-cells to treat conditions previously considered incurable.
In the process you get to see what Custer and his family – especially his parents, Kim and George – endured.
The first two episodes of “Ending Disease,” as well as a live question-and-answer session involving Custer, another patient, their doctors and Gantz, will be aired on the platform GATHR on Wednesday at 8 p.m. (To access it for $12, go to https://gathr.ius/screening/31693.)
All four episodes will be shown virtually at the Neon Movies on Friday.
“I guess you could say I was kinda lucky that I got hurt right then,” Custer said in that find-a-silver-lining style that sometimes only he possesses.
He was referring to being chosen for the clinical trial in Chicago and then having Gantz film him.
Custer said he’s looking forward to Wednesday’s Q & A session:
“I’m really excited about this. I’ve been an open book through this whole thing and I want people to know what I’m feeling and hear about stem cells and how they’ve positively affected other people, too.”
Over the past three years Custer and especially his parents have been quite candid about his stem cell treatment.
George and Kim once told me how their son was scheduled to receive 20 million stem cells in the trial.
Ryan said that would have made him the first person to have 10 million injected in his neck above his injured vertebrae and 10 million injected below it. But he said a snafu occurred and somehow he got only half the cells he was promised.
“Afterward we found out the technician diluted the cells too much and I only got 10 million,” he said. “I think my parents are mad about it and yeah, what happened did suck. But I’m not gonna sit here and say that guy is now the worst guy on the planet. He had a tough job and it just happened.”
“We were very disappointed how it turned out,” Kim once told me.
Ryan, though, sees it differently:
“I know my parents don’t think it helped me very much, but I think it did. I’m C-5, so basically that means I’d just have use of my shoulder blades and biceps. But now I’ve got my left wrist back a decent amount, too, so I can pick up things and hold certain things.
“Even my therapist said that normally a C-5 doesn’t have use of their wrists at all.”
As George told me once: “Everyone is different. We’ve seen other people with 10 million cells get a lot back.”
Ryan believes with the advancements that keep happening in stem cell therapy, he – and others – could be significantly aided in the future:
“Five, 10, 20 years from now it might not even be stem cells but some kind of pill you take and your whole body comes back.
“So you never lose hope about what could happen in the future.”
Love from Wright State
While he’s received cutting edge treatment in Chicago and Cincinnati, Custer’s best medicine has come from Wright State.
When the accident happened the Raiders coaches and players rallied around him. They were at the UC Medical Center, where Custer first was airlifted, and later they even visited him in Chicago.
When he returned home they showed up and after that they made him feel welcome at their games, both on the bench and in the dressing room.
Often Mike LaTulip, a WSU grad transfer who had played his final season with Custer, sat next to him at courtside. And I especially remember veteran guard Mark Hughes, who’ll be playing pro in Spain this season, coming out of a game and fist bumping his way to Custer, whom he kissed him on the cheek before saying “I love you.”
That Raiders’ love isn’t based on pity, but on admiration and pride. It’s why 27 months ago, Nick Goff, the Raiders director of basketball operations, and his wife Janae named their son after him: Clayton Ryan Goff.
“He’s our hero,” Goff said of Custer.
It goes back to that “fight on” attitude.
“Obviously I didn’t want to live my life like this,” Custer admitted. “What happened took so much joy away from me and has kept me from things I wanted to do in life.
“It sucks, I’m not gonna lie.”
“But hey, it happened. And now I’ve gotta wake up every day, put a smile on my face and go to work. You learn to appreciate the small victories instead of only wanting the big ones.”
On Senior Day last February, Raiders star Loudon Love wore Custer’s No. 33 jersey against IUPUI rather than his usual No. 11. And as the day’s festivities ended, a vocal woman in the stands mimicked Hughes’ whisper from the year before:
“We love you Ryan.”
The other day Custer returned that love:
“I can’t say enough about the Wright State community. I could have gone there for four years and played basketball and never been connected like this. I’ll be forever thankful for the way they helped me. They held my scholarship and did anything possible to make my life easier.
“I’ll be indebted to them until l the day I die.”
This past summer the coaches came down to his brother’s home on a lake outside Lawrenceburg, Ind., for a get-together that included golfing with Ryan’s dad and brother.
“And pretty much every day now I talk to Parker and Trey (former teammates Parker Ernsthausen and Trey Stacey) in a group chat,” Custer said.
“Those guys are some of my life-long, best friends.”
‘Keep pushing forward’
The main thing Custer wants people to get from the documentary is a better understanding of stem cell therapy.
“Some people, the first time they hear ‘stem cells,’ they think it’s just a bad thing. And it’s not. People need to become more educated before they make an opinion.”
In the late 1990s, scientists derived some human stem cells from embryos and for some people that became an ethical issue. People have extremely different beliefs on what constitutes the start of human life. Does it begin once an embryo develops into a fetus or at conception?
In 2001 President George Bush banned funding for stem cell research. But it 2006 scientists started using pluripotent stem cells not derived from embryotic stem cells. The technique didn’t present the same ethical concerns and under President Barack Obama there was a partial rollback of restrictions.
“There are a lot of misconceptions,” Custer said. “When we first learned about the chance for my stem cell therapy, we heard that some cells are from aborted babies…But these were not. They were left over from an In Vitro procedure.
“But my mom is a pretty devout Catholic and goes to church and all that, so she called our priest. And he told her she should do whatever she has to to help me. And stem cells do help people in so many different ways all around the world.
“Some people might not agree with that and think I’m a bad person for doing what I did, but that’s their opinion. And I think the more you find out about this, the more you see the good that is done.”
He hopes people pick that up from the documentary and by visiting the film’s website: endingdisease.com.
He and his family already have viewed the documentary and it’s given him a new perspective on what he went through in those early months in the hospital.
“I remembered all of it, but I didn’t really remember my mental state at the time,” he said. “It’s obvious I was upset and in shock. But seeing those images – seeing my face and seeing how other people were affected, too – it brought it all back:
“‘Wow, maybe I was sadder and more depressed than I thought.’”
And that’s why he feels proud of himself now: “I stayed at it. I’m in a good place now and I’ve just got to keep pushing forward.”
One day he hopes to be a sportscaster, have a girlfriend and drive his car wherever he wants. And by then maybe Bentley won’t be reconfiguring the yard any more.
And, as stem cell research and other scientific advances continue, he believes his condition could improve significantly.
Regardless, he said: “I’m in a good place now. I realize I can still achieve more than I ever thought I could and be happy.”
But he knows it will always come down to those six words:
“What’s done is done. Fight on.”
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