Today is Sunday. A very quiet and uneventful day here at the hospital. I plan on taking the opportunity to do a sidestep with my blog, to let you know what’s been going on behind the scenes of this adventure. Because the adventure doesn’t stop here. It’s going on across the U.S. and beyond, and it includes my sisters.
Over the past few months, as my trip has unfolded, I have had the opportunity to connect with a group of like-minded woman, who are also seeking to have stem cell transplantation (HSCT) for their MS. In the beginning, most of them where still searching for just the right facility to have their HSCT. It’s available in Germany, India, Israel, Chicago, etc.. Each of those facilities has its own set of criteria for acceptance, and every patient’s story is different, so any of these women could have ended up anywhere, but, they didn’t. They are ALL coming to Moscow.
There are nine of us, who have now created an informal group amongst ourselves called Sisterhood of the Fedorenko Alliance (SOFA) in honor of Dr. Fedorenko, our oncologist/hematologist, guide, and protector. Three of us have already completed our HSCT here, I am still in the process, and there are four more to follow this Summer and Fall. In addition, there are four more potential candidates waiting in the wings as all of the pieces to their puzzles come together. Our goal is to remain in touch throughout the rest of our MS-free lives. This unique HSCT bond cannot be duplicated with a non-HSCTr. Thanks to technology, we feel very strongly that we will be able to maintain it. Here is a list of our fearless members from all over the planet:
Amy Peterson, Texas, Trailblazer
Phoebe Scopes, England, Trailblazer
Tammy Reichert, Washington
Brooke Slick, Pennsylvania
Linda Stallings, Oklahoma
Vicki Wilson, Florida
Kristy Cruise, Australia
Jane Stratton, California
Sheli Godbold Smith, Texas
Our intent is to empower each other through the sharing of experiences, including tips and tricks to navigating this crazy HSCT war we are waging. It’s not that easy sometimes. There can never be too many shoulders to cry on or ears to bend. Our ages range from 30s to late 50s. We represent a wide range of career paths, geographic paths, and familial paths. However, our war paths are identical. That path leads to a life/future free of MS. I must add that this group of ladies is a HOOT! We all know that it takes one heck of a sense of humor to live with MS and we thrive on each other’s comical banter.
I’m going to give you a perfect example of the importance of this group in my life and the members who belong to it:
This morning, at 3:00 a.m (yes, I was up!), I had the perfect opportunity to step up to the plate for one my sisters. I received a private message from Kristy Cruise, aka Secret Agent Koala Bear (she’s from the Gold Goast of Australia-check out her pic below) saying that the pre-arranged plans that she had for lodging, in-town transportation and site-seeing had unexpectedly fallen through and would I mind if she borrowed my mom to show her the ropes for the three days before she was admitted to the hospital. What she didn’t know, was that I was being released a day early, and would be at the hotel when she arrived. What I knew, was that this secret agent would be enduring, alone, a 19-hour flight from the east coast of Australia, through Dubai, and on to Moscow. Add to that, I knew she was crushed by having to leave her young sons 2 and 5 behind with her family. We all have made sacrifices to make it here, and not all of them are financial. It was apparent that this Koala was going to need some “sister” love.
I shot off a “Code Red” message to mom, knowing that she would get it when she woke up, and “Operation Save a Sister” was put into motion. We decided that we would meet with her for dinner on Friday (if she can keep her eyes open), then we will take her with us to the Izmaylova Market on Saturday and possibly Red Square on Sunday. All of this contingent upon my physical capabilities. Then, and most importantly, we will take her via taxi to the hospital for her admission on Monday, get her through the security gates (They all know mom. They call her “English”) and make sure that she is delivered safe and sound to Dr. Fedorenko. We were graced with this opportunity when Jeff Root’s wife did the same for us and it made the experience a lot less daunting.
So there you have it. We will be there for each other through thick and thin as we trample down this road, machete in hand. WE ARE FIERCE! FEAR US!
LEUKOCYTES – 28 = ENGRAFTMENT
PLATELETS – 64 = ENGRAFTMENT
IT’S TIME TO PUT THOSE TURBINES TO WORK!
Sisterhood forever! I will repay you one day…or pay it forward in your name. xx
Go Sisterhood, all the best to all of you brave girls, from my hospital bed in Australia. Having another relapse from a rare autoimmune disease and living for the chance to be with you all in the fight!!
Your story bought tears to my eyes.Go girls.The power of love and loving support like this is powerful and priceless.
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