ST. LOUIS – Retired cops, one American and one British have been reunited in St. Louis.
Bob Perry has been diagnosed with a rare form of cancer. He’s on a mission that’s brought him to the hometown of a friend he hasn’t seen for a long time.
Perry is attending the International Waldenstrom’s Macroglobulinemia Foundation (IWMF) conference at the Ballpark Hilton in downtown St. Louis this weekend. IWMF is an organization for patients with a very rare form of cancer called Waldstrom macroglobulinemia.
The organization is holding a forum this weekend. It’s bringing together people from around the world, including retired St. Louis Police Lieutenant Jim Whyte and Perry, a retired British detective. They met in 2009 as police mentors for the U.S. military in Iraq.
“We hit it off straight away, and we kind of became inseparable for the six months we were together,” Perry said.
Now, they meet again for a reason neither could have imagined 14 years ago.
“Waldenstrom Macroglobulinemia. That’s easy for you to say,” Perry said.
The disease and that slogan are emblazoned on a t-shirt he wears. Still, he knows the fear attached to the words.
Though he suspects daily exposure to fires during his time in Iraq may have triggered a genetic predisposition to the disease, exactly how he developed it remains unclear.
It can attack nerve cells, leading to severe fatigue and trouble walking. Patients are at risk of severe complications from an array of infections, including COVID-19. Perry said a doctor confirmed his diagnosis after a bone marrow biopsy in 2015. He’d struggled with symptoms for four years.
“After my diagnosis, I went straight onto chemo and immunotherapy, did eight months of that,” Perry said. “Now I’m 68 years old and feel like a 48-year-old. It doesn’t happen like that for everybody, but for me, I’ve had a very good response. I’m still in what you might call partial remission. I will never be cured, but in partial remission and can just get on with my life.”
So Perry, along with about 150 patients and doctors from around the globe, are meeting in St. Louis to spread the word that life is good and that this incurable but treatable cancer doesn’t have to change that. He’s now a patient support manager for IWMF. He arranged Zoom calls for newly diagnosed patients and their families. He said those connections, that kind of support, are as critical as the medical treatments.
“This is such a rare condition. You just can’t find anyone else who’s got it to talk to,” Perry said. “So, this gives us the opportunity for me, coming from the UK, to meet the guys in America with this condition. You can be talking to me in the UK, you can be talking to me 24 hours later, and I can put your mind at rest.”
Having the forum in St. Louis was a random bonus for Perry and his old friend in the city.
“I thought, that’s where Jim lives. I have to go. I don’t care what it costs me; I have to go!” Perry said.
Whyte picked him up at St. Louis Lambert Airport earlier this week.
“The whole way to the airport, I’m like, ‘You couldn’t have written this, that this is where it would bring us,'” Whyte said. “The message of hope is this isn’t over yet. There are other opportunities that still lay ahead.”
“I don’t want anyone to live with this condition alone,” Perry said.
He’s certainly trying to make sure of that.
He’s issued an open invitation to the forum, either virtually online or in person.
To find more information about IWMF and the forum, click here.