I brush my bangs out of my sleepy eyes and sip coffee from my favorite mug as the Skype call goes through. The video screen blinks on, and I wave to the camera. Maya’s shaved head emphasizes her smiling brown eyes as she waves back, and the white and blue flowered top she’s wearing exudes comfort and feminity. I learn quickly that she isn’t feeling either of these things after just having had the chemo and transplant portion of her treatment a few days earlier.
It’s 6:30 am for me here in Edmonton, Canada where Maya is also from – 4:30 pm for her in Moscow, Russia, where she has spent her fall undergoing what Canadian doctors would refer to as an experimental treatment. But Maya informs me it’s one that has been used in Russia since 1999.
According to the MS Society of Canada website, “Multiple Sclerosis (MS) is an unpredictable, often disabling disease of the central nervous system which is composed of the brain and spinal cord.” People who have MS can have a variety of symptoms, including weakness, loss of balance, blurred vision and clumsiness. No two people who are diagnosed with the disease have the exact same symptoms. MS turns people’s immune systems against their own bodies, and in North America, there is no cure.
For Maya, her early symptom was optic neuritis, which resulted in partial loss of vision. “It was all pretty quick,” she says. “One minute I’m 18. My life is supposed to be about graduating high school and being able to be anything. Then, it was taken away.” Her eyes grow glossy as she reflects on the diagnosis, and she looks away from the camera. “I felt so incapable.”
The diagnosis affected her entire family. “I think my parents took it harder than I did,” she explains. Her younger brother and older sister were empathetic, and her family was a strong support system for her – but for Maya, everything had changed. “Before I was diagnosed, I was a vegetarian, I did Taekwondo and I did mission trips. After the diagnosis, I dropped it all.”
It’s hard for me to see darkness in the gurl on my laptop screen. Though she’s clearly tired and emotional while she shares her story, there’s a deep happiness radiating from her. That’s because she’s been given a new opportunity, a new chance and it has changed her life once again.
Maya is in Russia with her mother from September 14 to October 31 under the care of Dr. Fedorenko, where she has just undergone a hematopoietic stem cell transplant (HSCT). A very basic breakdown of the treatment is this:
1. Mobilization: Injections are administered to stimulate stem cell growth.
2. Apheresis (Collection of stem cells): Blood is withdrawn through a catheter and circulated through a cell-separating machine.
3. Chemotherapy: Patients receive 3-4 days of Chemotherapy to take down their immune systems.
4. Stem Cell Transplant: The patient’s own stem cells are given back to them.
5. Engraftment: Stem cells and the immune system grow and produce blood cells.
Maya has just received her transplant days before our interview. When she talks about the treatment, her cheeks flush and excitement bubbles over her words. “It feels like new life is brought to you!” she says. “It’s only a 10 minute procedure, but they inject 450 million stem cells per KG of weight. It’s quick, but overwhelming.”
Doctors in Canada don’t recommend this treatment. When I ask her about the differences between Canadian and Russian medicine, she has a lot to say. “When I was back home getting MRIs, I wanted to count my lesions. I wanted to know” – she pauses, choosing her words carefully – “but I was told if there are too many lesions they don’t count them. I went home thinking I must have hundreds of lesions, that I would never get better. When I came to Russia, Dr. Fedorenko gave me [more] MRIs. I have 14 lesions. I think that’s very countable.”
Maya was lucky. Her parents didn’t want to accept the idea that there wasn’t a cure for their daughter. “Although we have great care specialists that do what they can, there is still always something to look for that could possibly help, that physicians don’t often recommend or can’t support,” she says. “My parents spent thousands [of dollars] on alternate and homeopathic medicines, supplements – everything from Chinese medicine to specially trained chiropractors. Not all of it helped, but some of it did and I had the gratification of knowing I tried.”
To read the rest of the article, pick up a copy of our magazine, out December 1st on our website.