To Russia with faith; New Enterprise woman seeks medical procedure abroad with hopes it will halt her multiple sclerosis
NEW ENTERPRISE – Brooke Slick loves a project. Her latest one just happens to hold her life in its balance.
Hanging on the living room wall inside the New Enterprise home she shares with her husband, Doug, is a prayer reading, “God grant me the serenity to accept the things I cannot change; courage to change the things I can; and the wisdom to know the difference.”
In 2006, Slick was diagnosed with multiple sclerosis. Others might take such a diagnosis as a reason to call on serenity and acceptance. Slick is calling on courage.
With the support of family and friends, including her daughter, Carson, 19, of Roaring Spring, Slick, 48, a study coordinator at 611 MRI in Altoona, and her mom, Connie Taylor, 71, of Hollidaysburg, are heading to Moscow, Russia, for an April 28 admission to the A.A. Maximov Department of Hematology and Cellular Therapy, National Pirogov Medical Surgical Center.
They will be there six weeks as Slick undergoes a hematopoietic stem cell transplant meant to halt the progression of her MS.
They leave April 24 from John F. Kennedy International Airport in New York on a non-stop, nine-hour flight and check into the hospital April 28.
“I am the same way about this as I am with life. I’m a positive person about everything. It’s a project. It just so happens I’m the project, so I really have to do well on this one. I always plan for the best and am prepared for the worst.”
“I don’t care where we have to go,” Taylor said. “If it makes her life better, that’s where I’m going.”
Losing sight, finding a way
On her way to a job interview in 2001, Slick, a 1982 Tussey Mountain graduate who went on to school and land a job in New York and travel throughout the world, lost the sight in her right eye, she wrote in her blog, www.msslick.com‘ (www.msslick.com).
“It was like somebody put a piece of wax paper over it,” she said.
Test results came up inconclusive. She would experience more bouts of vision problems and a four-year stretch with no new symptoms. In 2005, she had trouble forming words, puckering her lips.
MRIs showed evidence of lesions on her brain.
Later that year, the left side of her body went numb. In 2006, she was officially diagnosed with MS.
Today, Slick deals with foot drop, a common MS symptom, for which she wears a brace on her right leg to compensate for the damaged nerves running from her brain to her foot that stop the reflex from functioning, she said.
Because Slick does not have the flexibility in her hand to hold a cane, she began using a hiker’s trekking pole for balance. She calls the pole her personal assistant who she has named, “Tiff.”
Her daughter does not complain even though she is in pain every day, Taylor said.
Shopping at the mall is an example of the challenge’s Slick faces. The cavernous space messes with her body’s sense of where it is in a particular space, she said.
“It’s just that your brain cannot quickly adjust to your body within the space,” she said. “You have to slow your body down to match the speed of your brain. You have to reel it in. It’s become a way of life. Only a few times has it become overwhelming.”
Slick used to take two injectable drugs, an oral drug and an infusible drug, Tysabri, which has stabilized her brain and spinal lesions, but symptoms including imbalance, loss of dexterity, hearing loss and numbness in her fingers, feet and mid-section continue to get worse.
Tysabri is the best drug offered for the treatment of MS and costs $40,000 a year, she said. Other drugs cost about $36,000 to $40,000 a year.
She said she is not taking any drugs now because they didn’t work, and they must be out of her system before the transplant.
The transplant in Russia costs $40,000. Other expenses including hotel, plane tickets, visas and passports will cost about $10,000.
In July 2012, Slick’s neurologist recommended she take a leave from work and concentrate on physical therapy and watch how she progresses on Tysabri.
Slick’s MS is considered “relapsing, remitting,” meaning she has “symptoms that come and go with some periods of recovery, but all along the disease continues to progress,” she said.
Slick said physical therapy, which helped her core become stronger, has also helped her ability to react to her body’s limitations, but it did not lessen them.
While off from work, Slick discovered an online blog written by Amy Peterson of Round Rock, Texas. Peterson was about to get the same transplant.
The two women began corresponding and Slick is now going to Peterson’s doctor in Russia, Dr. Denis Fedorenko.
Slick cried when she got the news saying she was accepted to get the transplant, she said. She had her “heart set” on going.
Peterson, 35, said she has been home four months, does not use a cane anymore and her scooter is “collecting dust.”
“While I do still feel the effects of MS symptoms, I finally feel hope that they are actually improving to some degree, instead of my former world of no hope and continued disability,” she said.
It takes 12 to 18 months to see benefits of the procedure, but patients may notice improvements for up to five years.
“Getting an international bone marrow transplant is no small thing,” Peterson said. “Travel to a foreign country can be terrifying, let alone traveling under such incredibly vulnerable conditions. Having come through it as I have, I can honestly say that MS is scarier than anything I endured while in Russia. May God bless Brooke with an incredible journey.”
Playing by the rules
While doing her research, Slick learned of a woman who lost several toes and fingers and developed a toxic condition, known as sepsis, after having the procedure done.
Different facilities follow different protocol, and in this woman’s case she was not isolated during her chemotherapy treatments, which were used to kill her immune system, Slick said.
All credible facilities follow an international medical protocol, she said.
Slick also will receive the chemotherapy, but will be put in isolation to reduce any chance of infection.
What stage of MS someone is in plays a factor in the amount of symptom reversal they will see, she said.
Slick will see the best results immediately following the transplant because of the steroids and antibiotics pumped into her body, she said. Slowly, her body will come down from the high, though.
Forty-five to 80 percent of patients will see a reverse in MS symptoms, she said.
“It is very important to note it is not a cure,” she said of the transplant. “It puts the MS in a permanent remission causing no new activity and no progression. It stops it.”
MS drugs currently available only slow the progression, she said.
The stem cells come from her own body, she said, adding they are not from an embryo.
Slick said her doctors and others like them “want to play by the rules and I respect that tremendously. They want to stick with the FDA-approved treatments. They don’t want to draw outside of the lines. There’s too much at stake,” meaning money or reputation, she said.
Plenty of American doctors out there would love to do the transplant, but lack the funding, she said.
“I played by the rules. I’m not a rule breaker at all. I never missed a dose of anything. I reported everything,” she said.
The next step
It is said, but not proven, that after the transplant, symptoms go away in the reverse in which they developed, she said.
The last symptom for Slick was losing the dexterity in her hand. Before that, it was foot drop. Before that, numbness in her feet.
“If I get any of those back it would be a blessing,” she said. If she could pick any to go away, she would eliminate those that slow her down the most – foot drop and imbalance, she said.
“Just to be able to race around like a maniac like I used to,” she said.
Although she has some concerns, without the transplant Slick predicts a devastating future for herself.
“I am heading straight to a wheelchair. It’s just a fact,” she said. “That’s what makes this not scary for me. The alternative for me is way scarier than to get the transplant done.”
She will have to learn to walk again, if her foot drop goes away, and will undergo physical therapy when she comes home, she said.
“I know she won’t sit still until she finds an answer to this MS thing,” said Taylor, who believes her daughter has thoroughly researched the decision. “My goal is to see her get this thing halted, reversed, whatever improvement she can get.”
Her daughter is prepared, and knows it will not be easy.
“If attitude and mindset have anything to do with it, we’re good to go, we’re halfway there,” Taylor said. “She’s amazing. I’m proud of her.”
Friend Cindy Baker of New Enterprise, who works with Slick, has done Slick’s MRIs for the last seven years and is her “biggest supporter,” Slick said.
Baker said she and Slick consider it a “travesty more research is not done for MS compared to other chronic illnesses” such as “cancer and heart disease,” Baker said.
Slick said the medical community in the United States has come far, but they just slightly keep missing the mark.
She predicts that in 10 to 15 years, the game will have changed.
Baker said it seems she is seeing more cases of MS and at a younger age than the average age of in the 30s.
Although she has concerns, Baker sees her friend’s alternative is to wait for the next best thing in the United States.
“My way of thinking is how do you know if you don’t try. … ?It’s a very brave decision and I think it’s the right decision,” she said.
One of Slick’s dreams was to walk across a parking lot to sit in the bleachers to see her daughter receive her high school diploma, Baker said. And Slick did it.
“When people start talking like that, it really puts into perspective for you what we take for granted,” Baker said. “She will find a way. Some way, some how she will find a way to get it done. Sometimes you’ve got to accept things the way they are [but] that’s not her attitude.”
Mirror Staff Writer Amanda Gabeletto is at 949-7030.