Taking a leap of faith: Eagle’s Carol Carlson seeks MS treatment in Mexico
February 6, 2017
EAGLE — Carol Carlson, of Eagle, has been living with multiple sclerosis for 26 years. She is hoping to change that reality this spring.
Hope — that's what this story is about.
Carlson was just 24 years old when she received her MS diagnosis. She was a senior at Northwestern University and her plans involved a move to Colorado when she finished her degree. It was a busy time, but she noticed a strange stinging, burning feeling in her upper arm and decided to get it checked out.
When she told the doctor about some other symptoms, he referred her to a neurologist, who ordered an MRI.
"I was very scared and worried because my mom had died from cancer when I was in high school," Carlson said.
But she didn't get a cancer diagnosis. Instead, the doctor diagnosed relapsing/remitting MS. "I said 'What's that?'" Carlson said.
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According to the National Multiple Sclerosis Society, MS is "an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body."
MS symptoms are variable and unpredictable and most commonly include fatigue, walking difficulties, vision problems, spasticity, weakness and more.
The diagnosis didn't really change Carlson's life for years. She went ahead with her move to Colorado. She eventually met and married her husband, Ralph, and her life went on. But every now and then her MS would manifest itself.
"I have always had weird symptoms, but it was never really affecting my everyday life," she said. "It wasn't something I thought about all the time. It was part of my life, but it wasn't my whole life."
She said her MS was a "caged dragon" for much of her young adulthood. She made a decision early on not to take the available MS treatment drugs. "Some of the medicines scared me more than the disease," she said.
The Carlsons married, moved to California and welcomed sons Tate in 1999 and Kevin in 2002. Her second pregnancy resulted in a MS relapse, and Carlson found herself battling double vision and other symptoms. But she eventually recovered and the Carlsons returned to Colorado in 2005. Ralph began work as a science teacher at Eagle Valley High School and Carol started work as a dual enrollment coordinator for Colorado Mountain College.
Then in the summer of 2010, she experienced another relapse.
"I never really recovered from that last relapse," she said.
During the past six years, Carlson has seen a slow, steady decline in her mobility.
"I couldn't really see a future for myself," she said. "My life became about how many steps I had to take."
She started walking with a cane, mainly for stabilization. Then she purchased a scooter so she could get around at home and at work. She reluctantly collected a handicapped placard for her car.
With her MS battle at the forefront of her days, Carlson started aggressively looking for a way to take back her life.
After extensive personal research, she believes she has found it.
A leap of faith
Carlson will travel to Monterrey, Mexico, on Feb. 25 to check into the Clinica Ruiz for HSCT — Hematopoietic Stem Cell Transfusion. This procedure does not use embryonic stem cells. It will use stem cells harvested from Carlson's own blood. In simplest terms, the procedure will involve drawing Carlson's blood and intensely filtering it to harvest the stem cells. She will then undergo an intensive chemotherapy regime that will basically kill off and reset her immune system.
Following the chemo, doctors will reintroduce her stem cells. Because of her lack of an immune system, Carlson will have to remain in isolation in the days following the treatment.
Carlson noted there is controversy about the procedure and acknowledged that the idea of traveling to a foreign country to receive such a drastic treatment sounds scary. But she said a future dominated by MS frightens her more.
"I am not afraid of dying. I am afraid of being a burden to my family," she said.
On the subject of burdens, this treatment carries a heavy one. It costs nearly $60,000.
"When I first heard about this I thought, 'We don't have that kind of money,'" Carlson said. "Taking a second mortgage out on our home to pay that didn't seem responsible."
But her continued research and her conversation with people who had undergone the procedure spiked her interest. The more she heard about the procedure, the more she became convinced that it was the real deal.
"Can you put a dollar value on what it means to get your life back?" she asked.
Carol said after Ralph looked at the research and results from Clinica Ruiz, he was also on board for the treatment.
"I have seen Carol's slow decline, too," Ralph Carlson said. "This made sense to me."
Ralph Carlson said the way he sees it, they can spend the money now to attempt a cure or they can spend it later on wheelchairs and home modifications and other costs associated with MS as her disease progresses.
"We are going all in," he said.
Hope on the horizon
Naturally, Carlson admits she has moments of misgiving about her upcoming treatment.
"But that doesn't really matter at this point. I am so happy to be going and to have a better outlook on life," she said.
In September, she applied to the Clinica Ruiz.
"In my mind, I thought it would be nice to get a date for treatment by the end of the year," she said.
She heard back from the clinic Nov. 2, offering her the late February date. At first she was concerned that would be too soon.
"But then Ralph said 'It's about getting better sooner,"' she said.
In December, the Carlsons tapped into their home equity and sent off the treatment payment of $54,400. Friends of the family have since set up a GoFundMe page and are planning a Feb. 23 fundraiser at Seven Hermits Brewing to offset future medical costs associated with Carlson's care.
Carlson's sister will be accompanying her on the trip, to serve as a caregiver. They will remain in Mexico for 30 days and then Carlson faces another 30-day recovery at home.
"I am going to be really sick. I am going to lose my hair. But I am going to be sick with a purpose," she said.
Carlson knows some of her friends and neighbors are concerned about what she is doing. She also knows that many medical professionals are skeptical about the treatment. But she remains undeterred.
"I really feel that this will be the answer," she said.
She promised to continue to share her story, regardless of what happens. She is steadfast in the belief that she is moving toward a happy ending.
Carlson has already set her first post-procedure goal. It may sound modest, but it also says a lot about the limitations she faces today.
"I want to walk from the parking lot to Hot Stuff Stadium for Tate's graduation in May," she said.