CLEVELAND (WJW) — Daphne Jones, 52, a longtime teacher, twin sister, mother and grandmother, has been healthy most of her life.
Her symptoms started with backaches, swelling and tingling hands and feet. They continually seemed to get worse.
But it was when she got to work at her elementary school in May 2019 that she realized something was very wrong.
“I felt like I was walking in sand, and I was having pain in my feet,” said Jones, of the Maumee area.”I felt like my back was in a rubber band or vice.”
She went to the emergency room, where doctors a few hours later gave her devastating news.
“He came back and said metastatic cancer,” she said. “I was in shock.”
More tests revealed she had a collapsed lung and a lacerated liver. Doctors also said she had lesions all over her body.
“I didn’t feel any of these things,” she said. “They just kept running more and more tests. They kept saying there are lesions everywhere. We don’t know what’s going on, but we’re going to start you on radiation and chemo.”
That diagnosis would prove to be the first of several in her journey to solve her medical mystery. She saw nearly 20 doctors and specialists, who gave her 13 different diagnoses including a fungus, myeloma and multiple sclerosis.
“There were so many doctors, I didn’t know what to do,” she said. “I thought I was dying. They just didn’t know what it was.”
In July, her symptoms got even worse, and she was confined to a wheelchair.
“My left side went numb,” she said. “I go to the point where I would drop things, I couldn’t feed myself. I couldn’t use the fork anymore. I was really scared I was going to be paralyzed.”
That’s when her primary care doctor sent her to the Cleveland Clinic. There, she met Dr. Jack Khouri, a hematologist/oncologist who specializes in cancers and disorders of the blood.
Luckily, her condition was not a medical mystery to Khouri.
“When I saw Daphne, I actually already had the diagnosis made,” he said.
Jones didn’t have cancer, multiple sclerosis or any other condition doctors previously discussed.
She had POEMS syndrome, a very rare plasma cell disorder. The disorder causes plasma cells, which are the main players of the immune system, to become dysfunctional, manifesting themselves into the symptoms she was experiencing along with neuropathy.
At the time, her VEGF level, which is the measure of a type of protein that stimulates blood vessel formation, was five times the normal levels.
“With the liver being enlarged, the spleen being enlarged and the hardening of the bones…putting all those things together…this was really consistent with POEMS,” said Khouri.
Khouri said the disorder is so rare, that he doesn’t see more than three people a year with it at the Cleveland Clinic. It’s not only uncommon, it’s extremely hard to diagnose.
“Because of the different symptoms people can have,” he said, “it becomes really hard to kind of put them together and unify the diagnosis into one. Not many people have seen this disorder, not even in medical school. Even in training.”
Jones’ nurse, Mary Ann Karam, said it usually isn’t until patients are very sick that they’re diagnosed.
Jones said after finally finding out what was wrong, she was relieved but still afraid because she’d never heard of the disorder.
She was put on several medications that are actually also used to treat myeloma, a cancer of the plasma cells. It didn’t take long for her fear to turn to hope.
“I could tell within the first month…I started feeling better,” she said. “I couldn’t use my hands, but I could move my foot a little better, and then it just continued getting better. My body was starting to feel better. Even my thinking was starting to be clearer.”
By about the third month of treatment, her fingers, which had become stiff began to open up. By the sixth or seventh month, she could stand and walk some.
“Every time I would go in and see Dr. Khouri and Mary Ann, they would say my numbers were better,” she said. “I was so relieved. I was so desperate, I did not want to be paralyzed. I wanted to hurry up and get back to teaching, so I was doing everything I could to get back and feel normal again.”
Fast forward to today.
“I am almost at 100 percent,” said Jones, who does still need a walker for long distances. “I’m walking normally. I do everything now without any assistance.”
She even started working as an office administrator at her church.
As far as her recovery so far, Khouri jokingly described Jones as an “over-achiever.”
“She’s made a really speedy recovery,” he said. “Oftentimes, neuropathy can take years before it gets better, at least six months to three years to see results. She exceeded expectations.”
“She worked and worked and worked,” added Karam. “She’s a very strong woman.”
Khouri said from here, he will continue to monitor her numbers. She won’t need to be on medication for the rest of her life, but she may need what’s called an autologous hematopoietic cell transplant, which would provide remission for several years.
Jones knows there is still work yet to do. But she is thankful every day for what her doctors and nurses did to help her get her life back.
“They have a special place in my heart,” she said. “I look forward to going in. I love hearing the progress. I pray for them every single day. I feel like at one time, my only hope was going there.”