North Fork native begins stem cell treatment to battle MS

07/14/2016 12:15 PM |

Juarez

When Randi Juarez woke up one morning in October 2014 to discover her arm was numb from the shoulder down, she assumed she had a pinched nerve.

The uncomfortable sensation, however, lasted about a month. Three months later, she also lost sensation in her legs.

Ms. Juarez, a registered nurse and 1999 Southold High School graduate, suspected she had multiple sclerosis. When she met with a neurologist, an MRI confirmed the diagnosis. Numerous lesions were observed on Ms. Juarez’s spine and brain. So was a “black hole,” an area in which nerve cells within the central nervous system have been damaged beyond repair.

Despite the news, Ms. Juarez said, “It was actually kind of a relief that it wasn’t something more serious.”

As a medical professional, Ms. Juarez was familiar with MS, which has no cure, and had treated patients with the autoimmune disease. Despite her diagnosis, she took comfort in the fact that she didn’t have a brain tumor — a thought that once crossed her mind.

“After I accepted it, I just kind of went into fight mode,” she said. “I was going to do everything I could to fight progression and to stay active for my kids. That was always my attitude.”

In January 2015, Ms. Juarez was diagnosed with relapsing-remitting multiple sclerosis, a more progressive form of the disease.

MS causes the immune system to mistakenly attack the coating found on nerves, leading to inflammation. This can spur symptoms such as numbness, tingling, weakness, an inability to walk and, in extreme cases, even paralysis. Complications with speech, memory, swallowing and vision have also been reported.

MS is referred to as a “snowflake” disease because symptoms vary from person to person. While it isn’t technically considered a terminal illness, complications involving organs can cause death.

For four months last year, Ms. Juarez received infusions of Tysabri, a drug meant to reduce the number of episodes patients with relapsing MS experience. Lab results weren’t favorable, so doctors tried a more aggressive approach, which involved a light form of chemotherapy. Ms. Juarez’s symptoms stabilized.

But Ms. Juarez, who now lives in North Carolina, wanted a better quality of life and a greater chance of remaining active with her three children. She turned to social media to see what her options were.

Randi JuarezWhile browsing a Facebook group for MS sufferers, Ms. Juarez saw someone mention Dr. Richard Burt, a researcher at Northwestern Hospital in Chicago. She researched the work Dr. Burt has performed using stem cell treatments to diminish the symptoms of autoimmune diseases and read that he had a high success rate with MS patients.

“One woman had it done 15 years ago and still hasn’t seen any progression,” Ms. Juarez said. “No relapses and the MS symptoms are gone.”

Dr. Burt’s aggressive treatment essentially replaces a person’s immune system. It starts with a round of chemotherapy that lowers a patient’s white blood cell count. The next day, they receive self-administered injections intended to stimulate the growth of stem cells, which Ms. Juarez explained are found in bone marrow.

The treatment’s ultimate goal is to establish new stem cells that have no “memory” of the MS. After this is achieved, the patient is connected to a machine that extracts the stem cells. More chemotherapy is administered to further wipe out both the immune system and any residual traces of MS. The patient is then injected with the new stem cells.

If taken early enough, the approach is believed to stop MS from progressing, relieve symptoms and eliminate the need for medication.

The treatment, which Dr. Burt has performed since the 1990s, is currently in the trial stages of becoming approved by the U.S. Food and Drug Administration.

After reading about Dr. Burt’s success, Ms. Juarez applied to be considered for the treatment. Shortly after, she received a phone call to schedule an evaluation this past May.

Five minutes into the evaluation, Ms. Juarez said, Dr. Burt offered the treatment to her on a compassionate basis after taking into account the aggressive treatment she was already receiving. Her procedure was scheduled for June.

Ms. Juarez requested approval for the treatment from her health insurance company with little confidence they actually would.

“They’ve been notorious for denying treatment,” she said. “I was expecting to have to write an appeal.”

When Ms. Juarez received a notice saying the procedure would be covered, she was shocked.

“I guess they saw that they’d be paying less for this than my other treatments,” she said.

Dr. Burt’s stem cell treatment costs around $150,000. Comparatively, Ms. Juarez’s chemotherapy infusions, which she had received on a quarterly basis, cost $60,000 a year.

Although the procedure was covered, Ms. Juarez still had to set aside money for airfare and hotels. She also had to factor time off from work.

“I’m basically the breadwinner in my family, so being off that long isn’t good for the family,” said Ms. Juarez, who is the daughter of Greenport Village Mayor George Hubbard Jr. “I have some time off, but not nearly enough.”

Ms. Juarez has a 13-year-old daughter and two sons, ages 9 and 6, to support. Her husband, Jesse, is a stay-at-home father.

Earlier this year, the Juarez family created a GoFundMe page “Help Randi Fight MS” to raise money for the out-of-pocket costs associated with the treatment. So far, they have raised more than $8,600 of a $10,500 goal.

On June 17, Ms. Juarez received her first round of chemotherapy. Six days later, her stem cells were collected.

In an update on her GoFundMe page, Ms. Juarez said the goal was to collect 2 million stem cells. Doctors collected 8.68 million.

Ms. Juarez was scheduled to be admitted to Northwestern Hospital on Wednesday for about two weeks to begin the final stages of the treatment. On Monday, she is scheduled to receive the new stem cells. Doctors will then wait for her white blood cell count to reach an acceptable level.

Recovery ranges from three months to a year because the immune system remains suppressed to some degree. Ms. Juarez said she was already aware of the risks.

“On the bright side, I don’t have to change diapers,” she said.

Ms. Juarez has received much support from her family and from BAYADA Home Health Care in Salisbury, N.C., where she is a clinical manager.

Ms. Juarez said her husband has been supportive in taking on responsibilities that she won’t be able to do when she initially comes home.

“He wants me to be as active as I can and be able to do things when our kids get older,” she said. “That was my biggest fear: ending up in a wheelchair one day.”

Mr. Juarez described his wife as “tough and determined.”

“She is a really good mother and she does a lot for the kids and for me,” he said.

Mr. Juarez said his wife is the type of person to always persevere, even if she’s in pain.

“She wants to be tough and push through everything,” he said. “But I know when she is hurting more than she tells.”

Ms. Juarez’s father, Mr. Hubbard, said he knows all too well the toll MS can take on a person. His cousin and sister also suffered from the disease.

“I know what they went through for years and how this illness took its toll on them,” Mr. Hubbard said. “And I’m super hopeful that this treatment that Randi is having now will stop the progression of the disease and she won’t have to go through what they went through.”

The mayor added that he is thankful for all of the support his daughter has received through her GoFundMe page and for his friends and family, who are keeping Ms. Juarez in their prayers.

“She’s very brave with this treatment,” Mr. Hubbard said. “She’s a fighter and she’s going to get through this.”

Photos: Southold High School graduate Randi Juarez has battled multiple sclerosis since October 2014. Now the mother of three children is trying an aggressive treatment, which essentially replaces a person’s immune system. (Credit: Juarez family, courtesy)

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