Support Kaettie's Journey to STOP Her MS!

Hi, I’m Kaettie! If you don’t already know, the best way to remember how to pronounce my name is… it rhymes with spaghetti! Dad started that and it was mortifying when I was a second-grader. I’m grateful to have outgrown that stage; turns out it’s the best way to tell people how to say my name and they usually remember it!

I have MS (multiple sclerosis). Until recently, it was hard to for me to say that out loud. Admit this reality. On June 12, 2020 my neurologist confirmed this scary, permanent diagnosis. That day, and many since, was devastating. My identity, who I am, has always been tied to activity. The things that have brought joy to my life are things I can’t do anymore. I can’t run. I can’t backpack high into the mountains to find silence and solace. I can’t travel and explore the way I prefer, on foot. Snowshoeing, snowboarding, day hikes, walks with friends, keeping up with my niece Esmé on her strider. At best, I can walk a few blocks, slowly.

At first, I started having foot drop on my left side. It would show up after I’d been out trail running for a long time. Foot drop means tripping and sometimes Superman-style falls. They weren’t graceful, by any means, and usually produced good laughter once I knew I was okay. So, I slowed down and was finally driven to figure out the root cause of this ‘foot problem’. I have been forced to slow down ENTIRELY now. It makes me so angry at my immune system. I spent my life being grateful for that same system. I hardly ever got sick. Little did I know, my immune system was attacking my body. Ferociously. Now I have a name for my quick and severe decline in strength and endurance. MS.

For the first 6-9 months I didn’t want to talk about it. Denial didn’t help, imagine that! I didn’t want anyone to know. It made it too real. But, my body didn’t care what I wanted. I loved the diet I tried for a year. I can confidently tell you it’s tough to eat nine cups of veggies every day, plus all the other fats, meats, etc. My immune system doesn’t care about veggies or organ meat. A new friend said, “Kaettie, if diet fixed MS, we wouldn’t have MS.” Poignant truths are hard.

My MS has progressed this year. I can still do the stairs in my house, thankfully. It’s not always easy. I’ve had to make big adjustments to my lifestyle. I’m often too tired to cook at the end of the day. I’ve learned to prep and cook earlier in the day. Grocery shop early in the morning. Take the closest parking spot I can find. I notice tiny moments of dis-coordination in my hands when I’m typing or playing piano. The tingling in my hands is constant. I’m adjusting to my limitations. I don’t have a choice. Explaining what’s wrong is still the hardest. Silas (my 7-year-old nephew) is learning his Tía can’t play with him like she used to, even though I can still play Uno like a champ. His little sister (Esmé, 2 ½) doesn’t know I ever could. And their cousin Forrest, my newest nephew, will never know. I’m grateful for the tiny humans in my life and how much time I get to spend with them. They all bring me so much joy, laughter, giggles, and love.

This is the perfect time for me to express my gratitude to all of people in my life who have supported me. You each mean the world to me. You listen, share, cry, hug, write, connect, LOVE. I’ve never felt as loved as I have on this journey. I’m so incredibly lucky to have you in my life. I love you!

This disease isn’t going to improve. Not ever. There is only one direction: downhill. That’s the hardest for me to accept. No matter how many squats, planks, or meters rowed I can’t get better. I suppose that’s why it’s called progressive MS. There are intense drugs out there. At best, they are 50% effective at slowing progression. Most of them work for MSers (just learned we have a name!) for a few years and then lose efficacy. Their side effects usually require other drugs to counteract those. If you know me, you know I have a healthy fear of putting engineered pharmaceuticals into my body. That’s the biggest reason I tried changing my diet in recommended ways first. I wish it had worked!

Then, I heard about HSCT (Hematopoietic Stem Cell Transfusion) treatment. This summer, before meeting a friend, I arrived early (to get that good parking spot) and that’s when I met Carol Clark. She had a beanie on and clearly didn’t have hair. Naturally, my ears perked up when she told me why. In short, she’s had MS for many years, the drugs stopped working and she chose to give HSCT a shot. I knew about it in the periphery, but I did not truly know. I didn’t know its efficacy, the possibility it could stop this terrible disease in its tracks. It is 70-80% effective at STOPPING PROGRESSION of MS. Stopping! I didn’t think that was possible. Carol introduced me to Brittny; they both underwent this treatment in 2021. I’m grateful for their knowledge, insight, honesty, and willingness to help!

HSCT is a commitment: 30 days in Puebla, Mexico (Clínica Ruiz, hsctmexico.com). Two rounds of chemo, extraction of millions of my stem cells from my blood, two more rounds of chemo, then placing those stem cells back into my body via transfusion. The chemo will annihilate my immune system. That’s the goal! To reboot my immune system and give it a chance to protect my body this time around. The procedure is safe and has been used for 50+ years on leukemia patients. Once I’m strong enough (immunity-wise) to withstand travel, I’ll come home to Durango. For the next six months I’ll live carefully, trying not to introduce any bacteria to my body. We all remember the beginning of COVID, when we were all extra-cautious, fearful of catching it. That will be me. Chances are I’ll feel worse before I feel better. I won’t have any hair and I’ll feel crappy. But I will have done the best thing I can possibly do to stop progression of this disease. To STOP it. HSCT gives me hope that I might not have to resign myself to progressing toward life in a wheelchair.

It’s not cheap. It will cost about $65,000. This covers the chemo, stem cell transfusion, 24/7 care for 30 days, a live-in caregiver in Mexico, post-treatment drugs to prevent infection, MRIs at the facility, and my flight to Mexico City. Insurance doesn’t cover this treatment. There are trials in the United States but I don’t qualify because my MS hasn’t progressed ‘enough’. Waiting until my body has deteriorated to that point seems crazy. I am already finding ways to embrace life no matter what condition my body is in. This is my opportunity to stop this disease.

The support of my community is how I’m going to be able to do this thing. I need people; friends, family, strangers. I need kindness, encouragement, laughter, and love. Feeling like I’m not alone in this journey will hold me up when I need strength. Help looks like those things first and foremost. Next, it looks like spreading the word and sharing my story. I need to trust in this process, trust in the kindness and generosity of the people I know and those I have not yet met. I have to be brave.

Thank you for being a part of this journey with me!

Love,

Kaettie

Ways you can support this mission:

• Create a hand-written note of encouragement. It will go on the wall of my apartment in Puebla.

• Donate through GoFundMe

• Donate through VenMo, PayPal, or Zelle (3035244565).

• Send a check to: Kaettie Wenger (it’s all being deposited in a separate savings account)

10 Town Plaza #65 Durango, CO 81301 – include a note, please!

• Plan a dinner, happy hour, or other event as a fundraiser.

• Share this GoFundMe link through your social media outlets or email.

• Have questions? Call and ask me!

• Find or make a cute hat to cover my bare head after chemo.

• Send me your good vibes every time you eat spaghetti! That’s a lifelong request.