Kim's HSCT Journey

The good news is the second of the four chemo treatments are behind us. Once again she took on the battle with great courage. So proud of her and the fight she is putting up each and every day. Unfortunately, she has had a terrible bought of nausea and we are back at the clinic for hydration and some precautionary bloodwork. We will be spending the night here tonight, but it is a brand new private hospital and she is in great hands. In fact, I cannot say enough good things about all the staff here caring for her.

She said to me as I was helping her into the hospital bed ‘Do you remember what Doctor said about patience who struggle with the chemo, they tend to be the ones who do the best with the treatment’. I asked her ‘Are you doing this on purpose’? No she said, it just gives me more energy to fight!

That’s it for tonight and again we truly do appreciate all of your thoughts and prayers.

Kim did great today and continues to amaze (as usual). Although we got off to a rough start with the IV, after a swollen arm followed by another try in the other arm, they finally found a vein that worked. I of course had to leave the room several times during the IV episode in order to be around for the rest of the treatment. Good news is she got to take the IV home tonight so we can avoid that tomorrow. 4 hours and 4 litres of water later we had the first chemo treatment behind us. Other than an achy head, fever blister and some minor nausea, she actually held up pretty well to the treatment.

It was nice to be back in our apartment (not in the hospital) and a warm bowl of soup and tortillas really hit the spot (loving HEB). Kim wanted me to express her gratitude for all the messages of encouragement and prayers. She is really enjoying the songs some of you sent. It filled the treatment room with sounds of peace, hope and healing. I cannot imagine what this journey would be like without all of you. You are all amazing!

Tomorrow we head back to the clinic for the second round of chemo. She is rocking this!!

After all my tests, my team of doctor’s officially declared that I am healthy (ironic?) and approved to begin HSCT for my MS.

I had a pretty rough morning battling a heavy dose of fatigue. All of the planning to get to this point may have caught up with me. Or, it could be just MS. Thankfully, we had two hours between appointments to rest back at our apartment. Mike’s comfort food and some time to read and relax was the best medicine to get me back up to full power. I believe it was no coincidence that today’s Jesus Calling was a reminder of what we both needed, PEACE!

Back at the apartment, Mike took a much needed nap (even got into his pj’s) after managing ME (mega high maintenance) and his full time job (yes, working remotely). He then cooked another fabulous meal full of fresh veggies, stepped in as my trainer for a good workout, washed the dishes (by hand) and did a load of laundry. Yep, he is a ROCKSTAR!

So, that brings us to tomorrow. Chemotherapy starts at 1:30pm (CST). We appreciate your thoughts and prayers! It feels so good to know that we have an army of supporters cheering us on!! LET’S DO THIS!!

Waterlogged would be how I described my morning! Two liters of water consumed and a blood draw kicked off the day, followed by a breakfast bar to end the fast. We were then introduced to the the people who have the brains to make this all happen at the Orientation! Head doctors, neurologists, hematologist and their teams presented what is in store for the month. It is a lot of information to take in all at once, but it is clear that we couldn’t be in better hands. We are filled with peace to finally be here and ready to dive in! Hope is a powerful thing! That is what I learned today!

Even though we are both exhausted (not sure why that was so tiring), we ventured out on foot (well, riding in my chariot that Mike pushed) to enjoy dinner with our group to celebrate the Mexican Independence Day…at the Italian restaurant down the street. Delicioso!

Tomorrow is another full day of tests. There is no organ left behind. Thank you for your texts, emails, FB messages and blog comments. Mike and I both love reading all of them and we have been brought to happy tears by your encouragement! We feel surrounded with love!

Penthouse Apartment? Well, if you insist! Gorgeous view? If we must. Let’s just say, we are not disappointed in our first impressions! Sunny and warm (not hot), huge HEB grocery store (Texas best!), gracious welcoming clinic staff, and a great group of MS’ers and their caregivers to go through this HSCT journey with us! The first night we walked to the steak house down the block. Mike tried the local dish (goat) while I stuck with more familiar fare. A good nights sleep was what the doctor ordered after the long day of uneventful travel.

Sunday, Sept 15: It was an unexpected free day for us while others completed their MRI’s. We took the day to settle in, grocery shop, and socialize on the rooftop patio. We did some paper work, text messaged and chatted with the boys (always a highlight)! My personal chef (Mike of course) cooked up a delicious linguine with capers & olive marinara sauce before my fast began this evening! Delicioso! Tomorrow, we start early with pre-treatment testing and meetings with the team of doctors.

Mike and I reflected on what we have to be grateful for and our tribe of friends and family is at the very top of our list. We are truly overwhelmed by the outpouring of love you guys are giving us! We read every message, text, comment and email that are written and wish we could respond to each one. Please know that your comments are appreciated and are lifting our spirits! The days ahead are daunting, with Chemo starting on Wednesday, so thank you for giving us courage to take each step forward!

“Be strong and courageous for the Lord your God goes with you.” Deuteronomy 31:6

I was looking forward to a fun weekend, waking up in Bolivia on the adventure of a lifetime! I was 45 years old, happy wife, busy mom of 2 teenage boys and had just embarked on our crazy dream of moving to South America for one year to help our missionary friends with opening an orphanage. On a normal/busy Saturday morning, only one month in our new country, I woke up and couldn’t feel my legs! They were both numb and unresponsive! I thought that I had pinched a nerve. August 5, 2013, is now the line in the sand between the before and after of life with MS. It took 6 months of numbness with nerve pain moving up the right side of my body, and 2 unexpected trips back to the US to get a diagnosis, April 2014. (Now, I need to add that I had a few ‘weird’ symptoms many years prior that I ignored because they went away quickly, such as numb tips on my fingers and toes, trembling right leg after exercise, and a weird episode of sprayed sunscreen hurting that same leg.) So, with a startling diagnosis, very little research and complete trust in my doctor, I immediately began taking Tecfidera to stop new lesions. In 5 years (with big moves from Bolivia, to Australia, now New York), the drug was successful with no new lesions, but I have experienced a slow progression towards disability. My new normal is consumed with carefully scheduling every moment of my day, rationing my energy, and deciding which walking aid I will need to keep doing LIFE, one day at a time! Due to the fact that tomorrow is a mystery, I decided to get healthy and drastically changed my diet and began a daily strength and exercise routine that made me feel better but didn’t stop the progression. Then a friend mentioned an article about a stem cell treatment that was working for some patients with MS and I started researching like a madwoman! After 2 years of obsessive research, prayer, conversations and continued slow decline, Mike and I decided that HSCT is the best and only option to stop MS in its tracks. There are risks, unknowns, and anxious moments, but we are focused and ready to take the chance on a bright and active future!

What is HSCT?

The patient’s bone marrow is stimulated with medication to produce millions of extra stem cells. Stem cells are basically blank cells that have no identity yet. These stem cells are harvested via apheresis procedure. The patient then undergoes high-dose chemotherapy to almost completely knock out the immune system. The stem cells are then reinserted back into the patient to grow a new immune system, one that has “forgotten” it has an autoimmune disease. Basically, it’s a re-boot of the immune system. Incredible! HSCT has been shown at worldwide sites to be up to 85-90% effective in halting the disease. It stops progression of MS in its tracks! That is something no medication has been able to do. It’s also a one-off treatment. One time and you are done! No, it is not an easy procedure and some might consider it extreme at first. But when you start to research it you quickly realize it makes complete sense. A side note here-HSCT is not a new procedure. It has been used to treat many types of cancer for 30+ years. However, the application to autoimmune diseases is fairly new, only in the last 18 years or so. The other thing about HSCT is the sooner you have it done in the disease process the better. The idea is to stop the disease before too much damage is done. HSCT will halt the disease, not repair damage. However, many people do have reversal of symptoms if caught early enough because the body always wants to heal itself. (copied from blog by Kathy Carr http://www.ktcarrblog.wordpress.com/)

The bad news is that HSCT is not currently FDA approved for MS treatment in the United States. Although, several trials are currently in progress in the US, it will be several years before they are available. So, after much research we decided that Clínica Ruiz in Monterrey Mexico had the best and safest treatment plan for me.

OUR PLAN:

On September 14, 2019, Mike and I will fly to Monterrey for the 28 day treatment. We will stay in an apartment that is provided at the clinic and we will have bi-lingual drivers, nurses and a team of multi-disciplined doctors providing 24 hour care (Mayo clinic HSCT award recipients). Mike will be working remotely while continuing to be my knight in shining armor caregiver! At the completion, Oct. 12, we will fly to New Braunfels, TX, surrounded by family, while I am recovering and building my new immune system. The plan right now is to return to New York in mid December, but time will tell.

Mike plans on giving updates along the journey on this blog so please subscribe if you want to follow along! Our greatest treasure is your encouragement, prayers, and friendship that surrounds us and lifts us up! We are at peace with this plan and know that God is good and we hope to bring glory to Him wherever this journey leads.