A little over 2 years ago, the love of my life got hit with a pretty devastating diagnosis. Seemingly out of the blue, we were in an emergency room listening to a doctor tell us that her life was forever changed.
MS. Multiple Sclerosis. In case you didn’t know, it’s an Immune Disorder. Currently characterized as incurable. Boiled down to basics, an MS patients immune system is overactive and targets the nervous system. It’s a nasty S.o.B. that has the very real potential to permanently remove a patients mobility and in the more advanced cases can lead to death. The milder symptoms include numbness, muscle weakness and fatigue. But “mild” is a pretty relative term considering some symptoms may stick around forever. Even if the symptoms aren’t fatal, it’s some seriously terrifying shit.
I honestly didn’t know what the hell it was. It took an bit of research to really have an understanding of what we were dealing with. And let me tell you, the gut punch I received when I saw her potential future. Holy hell. I looked at her and to this day I dont understand how she didn’t just melt into a puddle and give up. I might have. But Kelsey is a fighter through and through. She made the decision right then and there to not give up. And two and a half years later she still has the same gritty determination not to let this beat her.
Let me tell you a little about her journey thus far. After we had our little girl in 2012, Kelsey caught the Ultrasound bug. Her experiences with the Sonographers that scanned our little girl pinged around her head and never stopped. After a little while, and some serious convincing, she finally committed to chasing her dream. She found an excellent program that was close (enough), and she enrolled. She was one of 6 who were accepted into her program, and from there on it was balls to the wall. Well, it certainly felt like it. She completed her general studies, and started the final two years of her program where she was to be formally trained and certified
before graduating and beginning her career. It was a struggle. I can’t tell you the number of times I cleaned up her note cards and held her on the couch so she could sleep somewhat comfortably for a little while. She gave it 150%, excelled in her studies and her clinical scanning, and did the whole damn thing while raising our little girl and adding two boys along the way. Graduation time came and it seemed like our world was coming together. She got a job offer from the closest of her clinical sites which she enthusiastically accepted, and then a short while later her dream job just kinda... showed up. She caught wind of some rumors of a Perinatologist from Annapolis who was going to be moving his practice 20 minutes away. Dream job status. Babies all day every day. Kelsey was on it, and she ended up being offered her dream job! A short wait that took forever, and it was orientation time.
Here’s where shit goes haywire.
A few days into orientation she noticed her vision was getting “tunnely.” Peripherals were disappearing in one of her eyes, and she sensed blackness encroaching where everything was normal a few days ago. She tried shrugging it off, but by her last day of orientation, her vision was pretty much down to a pinprick of light getting through her affected eye. She finally admitted that it wasn’t gonna get better on its own and we went to our worst hospital visit to date. She was suffering from Optic Neuritis. Not terrible on the outset, seemingly treatable, but linked strongly with MS. An MRI confirmed that Kelsey had several lesions on her brain, and the doctor said those two letters.
Lucky for her, steroid infusions in the hospital worked their magic and by 3 or 4 months later they managed to reduce the swelling of her optic nerve and her vision was almost returned to normal. That hasn’t been the extent of her symptoms. She’s had patches of numbness and tingling on and off since her MS became active. One “patch” started at the bottom of her feet one night and crept up to her chest before steroids managed to help. She’s experienced muscle fatigue that made her limbs feel like they weighed 5 times their weight. She’s experienced general fatigue that’s impossible to accurately describe. Think of the most physically and mentally exhausted you’ve ever been, and imagine living in that state for days on end where no nap, no sleep, no rest makes you feel any better. She’s experienced itching that’s made her feel like she could scratch through her skin to the bone and it wouldn’t help
relieve the sensation. “Luckily,” these are considered minor symptoms, and they often fade after a few months. Either with or without the help of steroids. Some of the not-so-lucky ones can experience untreatable pain, loss of mobility, loss of motor function and even death. All of these are possibilities we’ve had to face. But still no backing down.
With some searching and some horrible doctor experiences, we found an amazing medical team at Johns Hopkins Medical Center, and gained a wealth of knowledge about her disease, where it stands in her body, what her future looks like, and we’re able to set up and deploy a treatment strategy. Treatment options available to us, and recommended by her medical team do their best, but they aren’t a cure. At best they’re a Band-Aid. Once the right cocktail has been discovered, research has shown that new lesions stop appearing, but that doesn’t mean symptoms get better. I’m fact, symptoms caused by past attacks usually continue to progress despite any therapies approved by the FDA.
So now we get down to the crux of our dilemma. Through FB groups and the like, we found another treatment option. Human Stem Cell Therapy (HSCT). Boiled down, it’s basically a reset for the immune system. First stem cells are taken from the body, then the immune system is completely broken down with Chemotherapy. The stem cells are reintroduced back into thebody and used as a template to rebuild the immune system. It’s not a treatment approved for MS by our always correct FDA, which means that insurance
wont cover it as an approved treatment and it has to be paid out of pocket. But here’s the thing, there’s a good bit of medical research that’s already been published, as well as current medical studies directly focused on HSCT and its effects on MS. In research, and in the MS community, HSCT has been VERY beneficial and very effective in both the short and long run. Depending on the type and progression of the disease, patients that have undergone HSCT have experienced complete remission of MS as well as some experiencing some degree of healing that was not thought to be possible for nerve damage.
Finding out about HSCT was like finding out a rumor of the biggest diamond in the world, only to find out that a LARGE amount of money has to be invested before being able to locate and mine it. As of now, there’s only a few places in the world that offer HSCT focused as an MS treatment, and based of exhaustive research, reviews and testimonials, we decided the hospital in Puebla, Mexico is the best bet for her treatment. It is a popular location for MS patients from all across the Americas, and has a proven record of being a top notch medical facility run by experts with 20 years of experience in administering Autologous Hematopoietic Stem Cell Transplants for patients with immune disorders. They’ve performed over 900 transplants on just MS patients, and their records show a recovery rate of around 80%! That’s phenomenal considering MS has historically been considered a slow death sentence.
So here we are. I’ve watched my wife struggle. I’ve seen her absolutely stunning amount of strength and resolve. I’ve keenly felt her heart break and despair. It’s impossible to describe how it feels to see her face this dark passenger she carries everywhere. How can you describe the feeling you get when you see her want to do nothing more than hug her kids, but a simple touch makes her body vibrate like a tuning fork? How impossible it is to describe watching her fatigue kick in and make her want to give up, but it’s only noon and the kids need her. I’ve been her shoulder she falls asleep on sitting upright in seconds because she’s so tired. I’m the shirt her tears soak into when it’s all just too much. She doesn’t deserve this. She deserves so much more. She gives all of herself to her family at home, her work family and the patients she cares for every day. Everyone else comes first before her. It’s time she gets out first. It’s time she’s give a chance to have a normal life. This is her chance.
If we hit our mark, her treatment will be completely paid for. Her care will be taken care of. Travel arrangements for her, myself, and her other support person for her month long treatment will be taken care of. Extra care for our 4 amazing kids for when Gram won’t be enough, and Dad is out of country helping Mom. Anything left over will be sent to another deserving MS patient in their bid to overcome their disease. Please help. Share. Contribute. Twist arms. Rob banks. Sell organs and limbs. Any little (or big) donation is
going to give my wife the hope that she will always be able to see her children. That she will always be able to lift herself out of bed and run after her kids on her own. That she will always be able to care for her pregnant moms who turn to her for comfort and medical care. She fucking deserves it more than anyone I know, and since I can’t take this burden from her and wear it myself, I hope that I can help her get the future that she deserves so much.
Thank you so much for getting this far. Thank you so much for your help shares and contributions. I’ll never be able to truly say how this makes me feel. How much hope it gives us. Thank you from the bottom of our hearts. From myself, from Aubree, Reid, Dax and Calla, and from my beautiful amazing wife. Thank you.
- Caitlin White
- Mary Moniodis
- Jessenia Kubala
- Erin Whittaker
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