SLIDELL, La. — A Slidell mother in her late 40's, was hoping for a chance to try an experimental treatment to save her life, but she kept facing obstacles that now may have taken away her chances for survival.
It's a battle that many others in her situation face. They don't have access to the latest medical treatments.
Now the system continues to fail a cancer patient who is running out of time.
It's a moment in time most people might take for granted. A parent sitting at the dining table helping a child with homework. But not for a single mom of three, Nicole Harris.
“That is the hardest part. It's very hard. It breaks my heart. I feel like I'm failing them,” Nicolle Harris, 49, said crying about her illness taking her away from her children.
It all started with back pain two years ago. Nicole was told it was arthritis. Several months went by. She started going down.
“At that time I couldn't walk. I couldn't bathe myself. I couldn't do anything.”
Then from blood work and a bone marrow biopsy, the long-awaited diagnosis.
“I was terrified because it's cancer,” said Harris.
"It's very treatable"
Multiple Myeloma is a cancer of white blood cells called plasma cells. That's what fights infections by making antibodies.
“They told me if I was going to have cancer, this is the one to have because it's very treatable. That gave me a lot of hope then, it wasn't going to be this bad,” she remembers.
There was radiation, chemo, and a stem cell transplant. That failed immediately. Then more chemo, and more chemo, eight treatments in all. Then new hope, a clinical trial at MD Anderson in Houston. But soon those hopes vanished.
Can't afford the treatment
“There's no way I could come up with that kind of money. I mean I'm sitting here with a treatment that could give me years right in my grasp, and I couldn't have it,” Harris said through tears.
You see, Nicole is on Medicaid. Being this sick, she could no longer work cleaning houses with her friend. The initial assessment in Houston was nearly $40,000. Medicaid would not pay because it was out of state.
Through a chain of E-mails forwarded several times over, Medical Watch learned of Nicole's desperation. We reached out to the LSU Health Cancer Clinical Trials program.
“The state of Louisiana has poorer outcomes than the rest of the country with respect to a variety of cancers, and much of this is due to access of care,” explained Dr. John Stewart, Director of the LSU, LCMC Cancer Center.
Dr. Stewart has just come back to Louisiana for this position. His goal is to create a system that gets rid of health disparities in cancer care.
“I think that it is unacceptable that a patient has to leave the state to get care for complex malignancies, and so one of the drivers for our cancer center is to offer state-of-the-art multidisciplinary care for cancer at home,” said Dr. Stewart.
The Louisiana Cancer Research Center is already home to many national cancer clinical trials with the latest investigational treatments. Dr. Stewart wants to grow that program. And that's where hope was reborn for Nicole. LSU Health doctors lined her up with that same clinical trial in Houston, opening here in New Orleans.
“That means the world to me. It gives me hope, like I have a chance to be with my kids for a little bit longer. Instead of three months, I could have three years,” she said.
Hope coming too late
But just days ago, again shattered hopes. In the months-long delay, Nicole's plasma cell numbers have plummeted. Even though the clinical trial is now in her own backyard, she no longer qualifies for that new, investigational treatment. She is running out of time, and is already out of money.
“I've been trying for a year and a half just to get disability. I haven't even been able to get that yet. I was approved medically, but not financially because all the stimulus payments were in my account, and so I had to start all over again and they said it could be five months or more,” Harris lamented.
But if the doctors are right, she doesn't have five months. Multiple bones are breaking. There's excruciating pain. Nicole's mother has moved in to her Slidell home to care for her.
When asked what's getting her through this ordeal, she replied crying, “My kids. Yeah, I don't want to leave them.”
Her daughter says she gets sad sometimes and copes with alone time.
“I will just I guess sit in my room and I guess hug a pillow,” said fifth-grader, Alaina Harris.
It's driving her oldest, a senior in high school, and really the man of the house, to focus on grades and get into LSU, then to veterinary school.
When asked where does his resilience comes from, Damien Harris replied with a chuckle, “My mom, and my Maw Maw. They're both hard workers.”
And while she can watch her three children with tremendous pride, Nicole now waits for the last chance at hope. Doctors want to change her chemo medicine. It has a 10 percent chance of helping.
But for nearly two weeks, doctors have been waiting for Medicaid insurance approval. Two weeks: that's an eternity in Nicole's life.
Nicole now has lymphedema in her hip and leg. That is a build-up of fluid when the lymph system is blocked. The earliest a doctor from her original physician’s office can see her, is two weeks from now.