Allison's Kickin' MS!
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Hey Everyone,
A team of us, 'Ali's Fighters', put this fundraiser together for my dear friends Allison Carr & her wife, Lauren. Allison was diagnosed with MS in Sept. 2013, and by the time she was diagnosed the MS was very advanced. Over the last year, I have watched this family of 8 do everything in their power to keep up with the mounting medical expenses, including downgrade their home and cars. On Monday, Dec. 1 Allison starts treatment 1,200 miles from their home and their 6 kids. Let’s help Allison & Lauren offset their expenses so they can focus on Allison's health and their children during Allison's chemotherapy and stem cell transplant.
Here’s their story directly from Lauren:
The MS diagnosis completely blindsided us. Allison had been having numbness and tingling in her legs that a sports medicine doctor attributed to bulging discs in her lower back. Allison received steroid injections for it, but it never really seemed to work. In March 2013, the numbness and tingling moved up to her left arm. We gave it a few weeks but it didn’t go away, so back to the sports medicine doctor we went. “Another bulging disc,” we were told, “this time in her upper spine.” A "quick operation" would get her back to healthy in no time. They just needed one MRI to confirm. Well, as a nurse, I'm of the opinion that there's no such thing as a "quick operation." I had some questions for the doctor before he cut open the love of my life.
It was a hot July day in the summer of 2013, I took an early lunch to meet Ali at the University of Utah Hospital for the appointment. The doctor came in and pulled the MRI up on the computer, took one look and said, "just one moment, I need to check on a few things." After he left the room Ali said, "that can't be good." Ever the optimist, I replied, "no, I'm sure it's nothing." We continued to joke around in the room and I gave Ali an anatomy lesson with the MRI image that was still on the screen.
The doctor came back in, this time with a nurse. We stopped joking around and paid attention. He pointed to the MRI, "as the x-ray showed, you have bulging discs in your cervical spine, but they aren't pressing on your spinal cord. So that's not what's causing your symptoms." In my mind I think, "cool, no surgery after all, great news."
He continued, "you have lesions on your spine consistent with multiple sclerosis." The words completely knocked the wind out of me. We were in complete shock. I didn't know which way was up, or even what my own name was in that moment. He must be mistaken, we weren't here for anything serious, we were just here to talk about the "quick operation" she needed. No, this couldn't be right. As I sat there in utter disbelief, I tried to pull together a few thoughts to ask the necessary questions, Are you sure? What next? Where do we go from here? What does this mean? He had little in the way of answers for us. The single message he had was, we needed to see a neurologist.
But before that, we had something much more pressing. Allison and I had talked about marriage before, but at the time, the same-sex marriage ban was still in effect in Utah. Ali was working full time and going to school, I was working full time, and together we have 6 kids. We wanted to get married, but just hadn't found the time. Nothing like a swift kick in the a$$ to help a couple reprioritize. But we couldn't afford to take all the kids with us and we didn't want to leave anyone out, so we decided to elope.
In just a little over a month, we made it all happen: hotel, flights, rings, photographer, officiant, marriage license, flowers, clothes, hair, makeup, wedding cake. And finally the day came. August 19, 2013, 5 p.m. San Francisco City Hall. We held each other's hands, looked into each other's eyes, and exchanged vows, promising to love and care for each other for the rest of our lives.
As I looked in Allison's eyes and vowed to be by her side in sickness and in health, I knew that I had no idea what MS and our future had in store for us, but that didn't matter. All I knew, and needed her to know, was that I meant it. We had one day to honeymoon in San Fran before heading home to Salt Lake City, and back to our new reality.
We found a neurologist. He gave us a feel good speech about MS. It's life changing, but no longer a death sentence. If you had 100 MS patients in a room, you'd only know 5 of them even had MS. People think it’s really bad because you only hear about the really bad cases. Awesome. The feel-good speech worked. We had some peace that things were going to be okay, but more tests were needed to confirm the diagnosis.
Blood tests, lumbar puncture, more MRIs. Then finally, the gate was open, and we got to see an actual MS doctor.
Sept. 11, 2013: It's MS. For sure. And it's advanced. You need aggressive treatment.
Wait, hold on. That can't be right, we just got a feel-good speech, you can only tell that 5% of MS patients even have MS. And it didn't come from Google, it came from a doctor, a neurologist even, and we believed the feel-good speech, it must be true. You're mistaken.
No. All that's true. But it's true for other people. You're in the 5%. "I am very concerned that given the number of lesions on Allison’s spinal cord, she could go from her current state to full paralysis in a very short time." This must be a dream. But it wasn't. And three hours with the doctor later, we had a plan.
But as it turned out, that plan didn't work. And neither did the one after it. Or the one after it. And quickly we were running out of treatment options for Allison. She needed aggressive treatment, but the more aggressive the treatment, the more side-effects there were, the more expensive it was, and the more "experimental" it was (experimental = denial in the insurance world).
Heart failure, leukemia, hair loss, infection, stomach pains, rashes, monthly or weekly injections, flushing, PML (progressive multifocal leukoencephalopathy). These are the side effects we were choosing between with each medication. And I'm not talking about “side effects” in the sense that Tylenol may cause leukemia because someone who took Tylenol once got leukemia five years later. These were real risks and real possibilities.
All the while Allison just kept getting worse. Difficulty walking, confusion, numbness, tingling, falling, severe fatigue, difficulty speaking (although, unfortunately the MS didn’t grow the verbal filter she was born without). The list goes on. We were terrified. Every morning before she woke up, I wondered what new symptom today would bring? Every call or text from Allison: Is she okay? Did something happen?
Then finally, we found out about an incredible autoimmune disease treatment option Au-HSCT (Autologous Hematopoietic Stem Cell Treatment). A friend of a friend of a friend sent an email about a treatment her friend did. Fate. It was the miracle we'd been looking for.
For 6 months we jumped through all the hoops, did two whirlwind trips to Chicago, and two insurance appeals. And just yesterday, the day before Thanksgiving, we confirmed that Allison will be getting the treatment that will save her life, and her quality of life.
Here’s a little bit about the treatment: Sunday we fly back to Chicago and Monday morning Allison is admitted to Northwestern University Hospital to begin “mobilization.” During this stage, the goal is to get rid of some of the bad immune cells and make lots more of her immune system stem cells. First step: chemotherapy. Then lots of antibiotics, antifungals, anti-anything-else-that-could-make-her-sick plus injections to grow the “stemmies.” After about 10 days of drugs, we harvest. Doctors remove Allison's immune system stems cells and store them. We come home to Salt Lake City for the holidays to recover, and then back to Chicago just after the first of the year to begin the second stage of treatment – “conditioning.”
During conditioning they completely knock out Allison’s old “confused” immune system with aggressive chemotherapy, clearing the way for a new MS free immune system. (Why this works is beyond me, but somehow the process acts as sort of a "reset" button.) Then at just the right time, the doctors re-infuse her own stem cells back into her body and BAM! Magic. And by magic, of course I mean, weeks to months of recovery while her new immune system gets up to speed and her body recovers from the intense chemotherapy. We then return to Chicago 6 times over the next five years for MRIs, labs, and follow-up visits with the doctors.
But a very high percentage (80-90%) of MS patients with Allison’s type of MS (RRMS) who undergo the HSCT treatment are relapse free after 5 years. In fact many see recovery of prior lost function (people walk out of their wheelchairs and/or throw away their canes). Although not technically a cure, it’s as close to a cure as it gets for MS.
We consider ourselves extremely fortunate to have even found out about this amazing treatment. So we want to spread the word!!! Here’s the link to Dr. Richard Burt’s website at Northwestern University’s Feinberg School of Medicine that tells much more about Au-HSCT as well as info about autoimmune diseases other than MS that it can treat. Thank you for taking the time to read our story.
A team of us, 'Ali's Fighters', put this fundraiser together for my dear friends Allison Carr & her wife, Lauren. Allison was diagnosed with MS in Sept. 2013, and by the time she was diagnosed the MS was very advanced. Over the last year, I have watched this family of 8 do everything in their power to keep up with the mounting medical expenses, including downgrade their home and cars. On Monday, Dec. 1 Allison starts treatment 1,200 miles from their home and their 6 kids. Let’s help Allison & Lauren offset their expenses so they can focus on Allison's health and their children during Allison's chemotherapy and stem cell transplant.
Here’s their story directly from Lauren: The MS diagnosis completely blindsided us. Allison had been having numbness and tingling in her legs that a sports medicine doctor attributed to bulging discs in her lower back. Allison received steroid injections for it, but it never really seemed to work. In March 2013, the numbness and tingling moved up to her left arm. We gave it a few weeks but it didn’t go away, so back to the sports medicine doctor we went. “Another bulging disc,” we were told, “this time in her upper spine.” A "quick operation" would get her back to healthy in no time. They just needed one MRI to confirm. Well, as a nurse, I'm of the opinion that there's no such thing as a "quick operation." I had some questions for the doctor before he cut open the love of my life.
It was a hot July day in the summer of 2013, I took an early lunch to meet Ali at the University of Utah Hospital for the appointment. The doctor came in and pulled the MRI up on the computer, took one look and said, "just one moment, I need to check on a few things." After he left the room Ali said, "that can't be good." Ever the optimist, I replied, "no, I'm sure it's nothing." We continued to joke around in the room and I gave Ali an anatomy lesson with the MRI image that was still on the screen.
The doctor came back in, this time with a nurse. We stopped joking around and paid attention. He pointed to the MRI, "as the x-ray showed, you have bulging discs in your cervical spine, but they aren't pressing on your spinal cord. So that's not what's causing your symptoms." In my mind I think, "cool, no surgery after all, great news."
He continued, "you have lesions on your spine consistent with multiple sclerosis." The words completely knocked the wind out of me. We were in complete shock. I didn't know which way was up, or even what my own name was in that moment. He must be mistaken, we weren't here for anything serious, we were just here to talk about the "quick operation" she needed. No, this couldn't be right. As I sat there in utter disbelief, I tried to pull together a few thoughts to ask the necessary questions, Are you sure? What next? Where do we go from here? What does this mean? He had little in the way of answers for us. The single message he had was, we needed to see a neurologist.
But before that, we had something much more pressing. Allison and I had talked about marriage before, but at the time, the same-sex marriage ban was still in effect in Utah. Ali was working full time and going to school, I was working full time, and together we have 6 kids. We wanted to get married, but just hadn't found the time. Nothing like a swift kick in the a$$ to help a couple reprioritize. But we couldn't afford to take all the kids with us and we didn't want to leave anyone out, so we decided to elope.
In just a little over a month, we made it all happen: hotel, flights, rings, photographer, officiant, marriage license, flowers, clothes, hair, makeup, wedding cake. And finally the day came. August 19, 2013, 5 p.m. San Francisco City Hall. We held each other's hands, looked into each other's eyes, and exchanged vows, promising to love and care for each other for the rest of our lives.
As I looked in Allison's eyes and vowed to be by her side in sickness and in health, I knew that I had no idea what MS and our future had in store for us, but that didn't matter. All I knew, and needed her to know, was that I meant it. We had one day to honeymoon in San Fran before heading home to Salt Lake City, and back to our new reality. We found a neurologist. He gave us a feel good speech about MS. It's life changing, but no longer a death sentence. If you had 100 MS patients in a room, you'd only know 5 of them even had MS. People think it’s really bad because you only hear about the really bad cases. Awesome. The feel-good speech worked. We had some peace that things were going to be okay, but more tests were needed to confirm the diagnosis.
Blood tests, lumbar puncture, more MRIs. Then finally, the gate was open, and we got to see an actual MS doctor.
Sept. 11, 2013: It's MS. For sure. And it's advanced. You need aggressive treatment.
Wait, hold on. That can't be right, we just got a feel-good speech, you can only tell that 5% of MS patients even have MS. And it didn't come from Google, it came from a doctor, a neurologist even, and we believed the feel-good speech, it must be true. You're mistaken.
No. All that's true. But it's true for other people. You're in the 5%. "I am very concerned that given the number of lesions on Allison’s spinal cord, she could go from her current state to full paralysis in a very short time." This must be a dream. But it wasn't. And three hours with the doctor later, we had a plan.
But as it turned out, that plan didn't work. And neither did the one after it. Or the one after it. And quickly we were running out of treatment options for Allison. She needed aggressive treatment, but the more aggressive the treatment, the more side-effects there were, the more expensive it was, and the more "experimental" it was (experimental = denial in the insurance world).
Heart failure, leukemia, hair loss, infection, stomach pains, rashes, monthly or weekly injections, flushing, PML (progressive multifocal leukoencephalopathy). These are the side effects we were choosing between with each medication. And I'm not talking about “side effects” in the sense that Tylenol may cause leukemia because someone who took Tylenol once got leukemia five years later. These were real risks and real possibilities.
All the while Allison just kept getting worse. Difficulty walking, confusion, numbness, tingling, falling, severe fatigue, difficulty speaking (although, unfortunately the MS didn’t grow the verbal filter she was born without). The list goes on. We were terrified. Every morning before she woke up, I wondered what new symptom today would bring? Every call or text from Allison: Is she okay? Did something happen?
Then finally, we found out about an incredible autoimmune disease treatment option Au-HSCT (Autologous Hematopoietic Stem Cell Treatment). A friend of a friend of a friend sent an email about a treatment her friend did. Fate. It was the miracle we'd been looking for.
For 6 months we jumped through all the hoops, did two whirlwind trips to Chicago, and two insurance appeals. And just yesterday, the day before Thanksgiving, we confirmed that Allison will be getting the treatment that will save her life, and her quality of life.
Here’s a little bit about the treatment: Sunday we fly back to Chicago and Monday morning Allison is admitted to Northwestern University Hospital to begin “mobilization.” During this stage, the goal is to get rid of some of the bad immune cells and make lots more of her immune system stem cells. First step: chemotherapy. Then lots of antibiotics, antifungals, anti-anything-else-that-could-make-her-sick plus injections to grow the “stemmies.” After about 10 days of drugs, we harvest. Doctors remove Allison's immune system stems cells and store them. We come home to Salt Lake City for the holidays to recover, and then back to Chicago just after the first of the year to begin the second stage of treatment – “conditioning.”
During conditioning they completely knock out Allison’s old “confused” immune system with aggressive chemotherapy, clearing the way for a new MS free immune system. (Why this works is beyond me, but somehow the process acts as sort of a "reset" button.) Then at just the right time, the doctors re-infuse her own stem cells back into her body and BAM! Magic. And by magic, of course I mean, weeks to months of recovery while her new immune system gets up to speed and her body recovers from the intense chemotherapy. We then return to Chicago 6 times over the next five years for MRIs, labs, and follow-up visits with the doctors.
But a very high percentage (80-90%) of MS patients with Allison’s type of MS (RRMS) who undergo the HSCT treatment are relapse free after 5 years. In fact many see recovery of prior lost function (people walk out of their wheelchairs and/or throw away their canes). Although not technically a cure, it’s as close to a cure as it gets for MS.
We consider ourselves extremely fortunate to have even found out about this amazing treatment. So we want to spread the word!!! Here’s the link to Dr. Richard Burt’s website at Northwestern University’s Feinberg School of Medicine that tells much more about Au-HSCT as well as info about autoimmune diseases other than MS that it can treat. Thank you for taking the time to read our story.
Organizer
Rachel Tolbert
Organizer
Salt Lake City, UT
