It’s been 10 years.
A decade ago, Josh Parker heard the words that would forever change his life—chronic myeloid leukemia.
The cancer is long gone, but, unfortunately, the now-38-year-old still battles the aftereffects.
Every single day.
His unexpected journey began in September 2008. On the job. Installing custom concrete pools.
“It’s pretty intense manual labor, so at first I thought I had pulled a muscle,” Parker said. “But this pain was literally excruciating, and I have a pretty high pain tolerance. It put me on the ground.”
His co-workers gathered around. They knew. He knew. Something was wrong.
“All the guys at work said, ‘Man, I’ve never seen you like this,’” Parker remembered. “‘There’s something going on.’”
He went to a nearby medical clinic. Doctors initially suspected kidney stones. But blood work proved otherwise.
Parker’s white blood count topped 330,000. The normal range is 4,000 to 11,000.
Cold, hard diagnosis
He was active. Healthy. At least, so he thought.
“They figured I had probably had it for about a year with my WBC built up that much,” Parker said. “I remember having little aches and pains, but thought it was normal from doing strenuous labor. I was in the best shape of my life. I work 10 hours a day and ride my bike from Marne back down through Lake Michigan Drive to Plainfield and Fuller—about 10 miles a couple of times a week.”
The diagnosis hit hard.
“You feel, when you get the news, that your life is over,” Parker said. “It’s like ‘wow,’ without knowing anything about it.”
Parker went to the Spectrum Health Cancer Center for help. He learned a mutated chromosome likely caused the cancer.
In 2010, Parker underwent a stem cell transplant to battle the cancer. Basically, a new immune system was grafted into his body.
But his body got confused.
“My body thought it was a foreign body or an infection,” Parker said.
It was then that he met graft-versus-host disease. They’ve been companions ever since.
Inflammation and scar tissue caused by the disease led to issues with his joints, skin and eyes. His range-of-motion suffered. His intestines hardened and it became difficult for him to absorb nutrients.
“My skin is tight and almost feels like leather,” he said. “It’s very tough and mottled looking. I can’t work anymore but I can do small things here and there. I’m getting better. In the last year and half, I’ve definitely made strides. There’s marked improvement over what I was able to do a few years ago.”
But that improvement comes with a tether. And a huge commitment.
Light treatment at the end of the tunnel
Parker has been undergoing extracorporeal photopheresis treatments at the Spectrum Health Cancer Center for five years now—every other week for two days—to help calm the disease.
During the treatment, he is given medicine that makes leukocytes sensitive to ultraviolet light. Blood is drawn into a machine, where a black light destroys the cells. The blood is then put back into his body.
Stephanie Williams, MD, an oncologist with the newly formed Spectrum Health Adult Bone Marrow Transplant Chronic Graft-Versus-Host Disease Clinic, is part of the clinic’s multidisciplinary team handling Parker’s care.
She said Parker suffers from chronic graft-versus-host disease, which can be common in adults after transplant.
“Many adults will have acute or chronic graft-versus-host disease,” Dr. Williams said. “His is pretty advanced, so it’s not as common to see someone like Josh. Initially, it’s an inflammatory process, then scar tissue develops.”
Parker suffers from fibrosis under his skin, in his lungs and in his GI tract.
“Their immune system is a bit compromised,” Dr. Williams said.
The team—which includes oncologists, dietitians, physical therapists and other specialists—aims to improve quality of life for patients battling this condition.
“We really take this multidisciplinary and very coordinated approach with each patient,” Dr. Williams said. “It can involve a lot of their functioning and quality of life.”
Dr. Williams said it’s impossible to know how long Parker will continue treatments.
“As long as he’s not getting worse, we’ll continue them,” she said. “He’s been battling this for a long time. He’s a remarkable young man.”
Spectrum Health is the only health system in Michigan that offers a specialized clinic for people who have undergone a bone marrow transplant but have to live with the many debilitating health issues that are often the result of such a transplant.
Parker is resigned to the reality that he could be continuing treatments for quite some time.
“There’s no definitive answer on when graft-versus-host disease decides to calm down,” Parker said. “I’ll be doing these treatments until my new immune system wants to play nice with my body.”
Parker could easily feel sorry for himself and his plight. Besides ongoing extracorporeal photopheresis treatments, he treks to physical therapy three times a week to help improve his mobility.
“It can be a struggle,” he said. “I realize I’m not what I used to be. I can’t move the way I need to, I can’t move the way I want to. To do simple things, like getting dressed, can be frustrating. But I keep a positive attitude and realize, even though I’m struggling at this point, there are people out there who have it far worse than me—people who don’t make it.”
Every day moments remind him.
“I was doing PT last week on the sixth floor of the Lemmen Holton Cancer Center. I watched Aero Med and another flight come in within 15 minutes of each other. I thought ‘I may be in PT, but I’m not like that person (who was airlifted to the hospital). They’re clinging to life at this point.’”
Besides his faith and positive attitude, there’s another mega motivator in his life—his 4-year-old daughter, Mara.
He can’t do all that he would like to with her, or once could, but he does what he is able—including building bird houses and bird feeders out of scrap lumber.
“I like to dabble in woodworking so we build some little projects here and there,” Parker said. “The other day she asked if we could make a wooden cat. We have a body, four legs and head. We have to figure out whiskers and a tail. It’s a work in progress.”
Like Parker. A work in progress.
As he crafts wood with his daughter, a large tattoo flexes with the muscles in his left upper arm—it depicts his diagnosis blood slide, which shows the leukemia cells.
It’s a constant reminder of how far he’s come, how hard he’s fought, and how determined he is to battle on.
“I have a beautiful little girl that needs a dad,” Parker said. “I want to be there for her. God gives me the strength to get up and realize it’s going to be OK. God has a plan and I’m supposed to be here for a reason.”