GRABBING LIFE BY THE STEM CELLS

This recap sums up our final week here in Panama. We’ve met wonderful, inspiring people, seen incredible sites, and experienced amazing progress. “Thank you” is not strong enough. I cannot find words big enough to express our thanks and appreciation for all of those who worked, fundraised, and prayed so hard throughout the course of our adventure. I cannot wait to thank each of you personally if at all possible. 

Humbled and blessed,

Matt

Today y’all are going to hear from me, Andrea! I love the sound of that….Y’ALL.  Can’t wait to hear it again.  

We just had another PT day and a day at the pool but this morning at PT I had 3 eye opening, pulling at the heartstrings, moments!  As Ivan was stretching me at the end of my workout, I was lying next to me buddy Hernan, the paralyzed guy from Costa Rica who we have mentioned before.  Hernan is paralyzed from the chest down and he never complains, he loves to lay on the bed and chit chat while he’s getting his therapy and he’s just a good ol’ boy, GOB for you ACU folks!  He leaves on Friday, after a month here as well. So we were talking about the spinal injections we get and that we both had one more before we leave and he followed that up with “I love those!” I said “you love the spinal injections?”  He said he loves them because he can feel them put the needle in his spine!! His first injection, August 2, he could not feel anything.  Now he feels them!  He is also starting to feel tingling in his fingers.  I wanted to jump up and hug him!  He will be coming back every 6 months and from the improvements he has seen after a month, I told Matt my day was just made!  

Then as we were leaving the gym, a lady came up to tell me goodbye because she wouldn’t be at the gym Thursday and Friday.  She just wanted to tell me she had enjoyed watching me and loved my attitude and that her heart was telling her to pray for me each day!! Ok, now my month has been made!!

To top it all off, when we got into our car that picks us up each day, there was a family in there already.  We said “Buenas,” which was followed by their hellos.  Ah, Americans!  So we chatted and found out they were from Richmond, VA and were there with their 7 year old Autistic son who has never verbalized anything, wouldn’t make eye contact or express any physical contact either.  We asked if they were seeing some good results and they said yes!  As we got out at our condo, I said “Bye Nicholas” and he turned and looked at me, straight in the eyes and said “Bye!”  Are you kidding me?  Ok, go ahead and throw whatever at me the rest of the year and I won’t even care.  I’ve just experienced three of the most amazing things and people in a matter of 10 minutes.  Wow, could this day get any better?  

I guess it could because we finished the evening with a tour of the canal causeway and dinner with our trainers, Ivan and Dick.  We wanted to repay them, somehow, so we took them out tonight.  We got to see all the boats waiting to enter the Panama Canal, the yachts parked in the marina, and the gorgeous sunset on the coast.  

Go ahead Thursday, try to beat today, I dare ya!!!

Humbled and blessed,

Andrea

(Hernan and Andrea chatting)

(Dick, Andrea, and Ivan … the BioFit trifecta)

(The happy couple at the marina before dinner)

(Pausing for pic on causeway before dinner)

(Pic of us at the marina on the causeway)

(Marina where we ate dinner tonight)

Managing Expectations

We’ve been so flattered, excited, and driven by the incredible feedback we’ve received from our friends and family. If you have offered up encouragement, prayers, or any positive support, I hope you know by now that we appreciate it. It has fueled our odyssey here in Panama. 

That said, we want to make sure realistic expectations are set. Expectations we set for ourselves as we monitor progress in the coming weeks and months. Expectations set by others that have either read this blog, spoken with us over the course of this journey, or heard about our adventures. 

We met with the head Dr. here for our final consult. It was a great meeting where we were able ask many of the questions we’ve had along the way about what to expect from here. The biggest question we’ve had the entire time is what we should expect as we head home. Will we see results next week? Next month? In 3-6 months? When does this wear off? We’ve heard several patients talking about returning for “boosters”? What will tell us that we need to return? 

As with anything related to MS, the answer is “it depends.” It depends on how the disease decides to progress. It depends on how well you keep up your end of the bargain. It depends on the environmental factors (e.g. stress, sleep, diet) that surround the coming months. It just depends. 

The Dr’s and other patients tell us that it’s highly likely that things will gradually improve in the next 1-3 months. Many patients see massive improvements, some while they are still here, some 30-90 days from the time they return home. Based on what the Dr’s have seen, the factors in our favor are Andrea’s young age, relatively short time since diagnosis, and the areas she wants to improve in all are in our favor.  

So, as we come home to meet and greet so many friends, family, and others that have come across this blog, we want to make sure they’re not disappointed or confused. While we’ve experienced new highs and seen progress in some of the more minor, unseen symptoms associated with Andrea’s MS, she likely will not ‘look’ any different. She will not be walking, jogging, or running any 5k’s with you in the next few months. She’s still going to need to hold on to my arm, a shopping cart, or a rail for the time being. That’s not to say that will not change any time soon.

With that, know that we are leaving Panama with a renewed sense of self, family, and the power of prayer. We feel so lucky to have experienced this wonderful journey and are honored to have shared it with you. God bless and stay tuned for much more from Andrea’s journey over the coming months. 

Humbled and blessed,

Matt

This weekend we decided to make the rounds while making sure we soak up some last chance R&R. We started off the weekend at the local marketplace where we picked up some local goods to ensure we didn’t come home empty handed. The flea market type setting was a cool, somewhat authentic view into the local flair which is part tropical, Caribbean style and part Latin American handmade jewelry, clothing and other unique goods. Sure there was plenty of touristy trinkets but all in all it was a worthwhile experience and we’re excited to share our findings with our kids and family who’ve stepped up to help out while we’re down here. 

Today was filled with plenty of rest and relaxation around the condo and up on at the rooftop pool. Generally, the pool is somewhat quiet and vacant but not today. As you can see from the video, it was Spring Break Panama like at the pool today. We learned from some this young man’s friends, he spent all night dancing and partying at the clubs down the road. Obviously, sleep was not a part of the mix. Enjoy the video and just know that no 20-something’s were injured in the making of this video. FYI, the girl cracking up in the background is one of his friends that turned us on to the story behind his struggles to stay awake.

The week ahead is our final week here and we’re ready to finish strong and GO HOME! We miss our boys something awful but are trying to stay focused on asking the necessary questions and advice for PT and medical needs in a handy ‘To Go’ package for back home. We have already discussed how we can make sure we hit the gym together which falls more on my work-life balance discipline (read: getting in and out of work on time).

We’re excited to see all of our friends and family and regain a sense of normalcy in our day to day lives. This adventure has been a journey we would not trade and we once again want to thank all that made it possible. 

Humbled and blessed,

Matt 

Greetings and salutations - 

To say that I’m simply “proud” does not begin to describe what I’m feeling towards my wife right now. Sure, I’ve had plenty of moments where I’ve been proud of her. The birth of our two boys, her battle with dealing with this diagnosis, and her ability to put up with three dirty, stinky, unruly boys in our household. (yes, we only have 2 sons so you do the math). But the past few weeks, specifically the past 24 hrs, have amazed and inspired me to no end. 

A little background:

In our day-to-day lives, I have a limited exposure to Andrea’s physical struggles. Obviously I’m aware of the issues like her difficulty walking due to being off balance and limited core and lower body strength. These are outward symptoms associated with the madness going on in her brain and body. I can tell in watching her walk around the house or grocery store, but for the most part we just don’t go places and walk where she has to hold on to my arm. We either have a stroller (no more), a basket, or I run in or go solo to get “stuff.” We don’t cruise the mall, go to the zoo, or long walks on the beach all that often. 

That said, the times we do it pisses me off. Not because of anything Andrea’s doing, but rather because of the things she CANNOT do. It makes me so angry that my beautiful wife and incredible baby momma struggles the way she does. After about 20 paces her foot starts to flop and drag making it seem as though she’s got a concrete boot on her left foot. We stop and rest 1-2 mins into any walk and as we discovered at our last family vacation to the beach, it’s just easier for me to give her piggy back rides to and fro. It’s a funny sight that I am thankful I can provide, but the reason behind the ride is maddening. 

Fast forward to now:

Our Panama condo is  located right off of one of the primary restaurant areas, filled with numerous options for a range of casual to fine dinning, all within “walking distance.” Yeah, we discovered that term didn’t apply to us. During our first weekend here, we decided to head around the corner to try out a highly recommended restaurant. It’s literally one block up and about a block down from our condo. During our journey to this restaurant, we stopped at least twice on the way there for Andrea to rest her legs and 2-3 times on the way back one of which was an extend stop on a bench across the street from our condo complex. It was probably one of the first real times I ‘got’ how hard it was for her. 

So, as you can imagine, going to the gym for the first time in years was predictably rough as well. Just the ‘2 mins on, 1 minute off’ (x3) warm up on the exercise bike wore out her legs. She never complained, just let them know when she was getting close to total lower body fail (aka: legs giving out). 

Over the past 2.5 weeks, she has worked her tail off in the gym (see videos: week 2, week 3) with the magnificent physical therapists Ivan and Dick. She’s followed their instructions and advice to not only build up her overall strength but dedicating several days a week to specifically focus on her strength associated with stability and balance. I’ve watched bits and pieces of these workouts from across the gym or after I finish my workout and have been so impressed with her positive attitude and willingness to grind it out when it obviously hurts. 

And it’s working!

That brings us to the past 24 hours. As a result of all her hard work and dedication, she’s showing great improvements in her overall strength and endurance. I wanted to watch a full work out so I tagged along the full hour with her and her trainer today. She was busting it out through a gut busting, upper body burning, teeth gritting work out. The trainer would tell her she had 2 more reps and she would crank out three just because. She was laughing, joking and always asking “what’s next.” All of this after commenting that she just wasn’t feeling it as we were waiting to get started. You could have fooled me with the effort and grit she showed today. 

While I have been impressed with what we’ve seen in the gym, I’m more concerned with how that translates to the everyday, “real” life. I’m proud to say that I believe it to be directly impacting how she operates in the practical use of said strength. Last night we decided to go grab a bite at the same restaurant that we went to the first weekend we were here. You remember, the one that required several rest stops mentioned a few paragraphs up. We headed out of the condo talking about the cool night time atmosphere of the area we’re in, and how we can’t imagine living in a place where you have the option to walk everywhere. Wouldn’t you know it — we looked up and we were standing at the front door of the restaurant that once seemed miles away from our condo. No stops. No breaks. No complaints of tired legs or feet dragging. It was a great moment, one of those times I’ll be hard pressed to forget for many years to come.

Sure it wasn’t as if we were skipping hand in hand, but it was as if I left my old wife at the condo and walked to dinner with another hot mama … one that reminded me exactly why we are here. 

Humbled and blessed,

Matt

(Andrea’s awesome trainer Ivan)

Not much to report so we’ll make this one quick. Today was another fun filled day of PT and pool time. The weather has been beautiful so we’re taking full advantage knowing our friends back home are melting away. We’ve both enjoyed the time to catch up on reading, or letting others read to us (Andrea loves audible.com), and spending some time in deep thought and discussion on a number of topics. 

Tomorrow we’ll share some pics from PT of our great trainer/therapist as he puts Andrea through the ringer. I believe he told her to “get ready to suffer” tomorrow. Should be fun for all. 

Finally, we’re both excited about tomorrow’s lunch appointment with Preston Walker. While I didn’t expect to come all this way to have lunch with a fellow DFW resident, I couldn’t pass up the chance to pick his brain. He’s literally been here and done this so I’d love to hear what lies ahead. Plus, he’s good people so it will be nice to have a good conversation over lunch … in English. 

Until tomorrow, enjoy the pics below. BTW, Andrea wanted me to share the pic of her nearly healed lipo bruises for all who are interested. 

This experience continues to humble me not only through positive progress for Andrea, but also in the amazing souls we meet along the way. At her daily physical therapy session, Andrea had the opportunity to learn about a young man that’s also here for stem cell therapy. His story is truly a lesson in humility, gratitude, and courage. 

Approximately seven months ago this young man was busy living life and enjoying being a 20-something. That is until one fateful day when the car he was riding in collided with another in an incredible, life-changing accident. As a result, this young man lost the use of his lower limbs as well as his best friend, the driver of the car they were riding in while the remaining two passengers walked away from the crash relatively unharmed. He finds himself dealing with this mayhem everyday … “why me?” … “why did they get to walk away?” … “why did he have to die?!” It’s a struggle he admits as his daily battlefield but offered this eye opening, incredibly insightful and humbling advice — ‘if you can, do!’ Whether that’s aimed at his caretaker father who said he was too tired to jog on the treadmill, or his friends who have every excuse for why they’re not seizing the day. This young man’s courage, strength, and insight is both refreshing and humbling. Next time you find yourself seated at the head of the table at your pity party dishing out the myriad of reasons of why you can’t _____, remember this young man. We all know that life is full of surprises, twists and turns so remember to do what you can to enjoy or take something away from each day. Whether that’s kissing your kids extra long at bedtime, calling your parents just because, or sending a friend in need a card or email of encouragement. 

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” -Jeremiah 29:11

With that, I hope you enjoy the video of some of the PT exercises Andrea’s trainers have her “performing.” We’ve taken quite a bit of video to take back in order to piece together a balance & strength building workout coming to a YMCA or 24 Hr Fitness near you, as long as you live in Keller, TX. 

Humbled and blessed,

Matt

Buenas* - 

Today’s post is brought to you by the word “walk.” We woke up this morning and went through our normal routines. After a few minutes, Andrea said “hey, do you see how I’m walking?” I watched her walk across the room and back and I’m sure my smile answered her question. Her normal hitch in her giddy up was a bit muted and she was moving along much quicker than most days, especially first thing in the AM. As we continued to get ready for PT it was very clear that she was less reliant on maneuvering between stationary object for balance. Her “I’m not drunk, I just have MS” shirt could have been altered from “drunk” to “tipsy” or “buzzing” ;) 

After a filling ourselves on hope, happiness, and Honey Bunches of Oats, we headed to PT to continue down Improvement Ave. Almost immediately, her trainer extraordinaire Ivan noticed and gave her a big “how ‘bout ya” high five. It was definitely a great start to the day and gives us hope seeing as we still have 2 full weeks of treatment and therapy. 

From PT we had a quick layover in the condo for lunch before we headed to the Stem Cell Institute for the 2-for-1 one sale going on today. Andrea received the standard IT injection of cord blood stem cells and was able to redeem her frequent injection card for the second of two IV injections of her own stem cells. While there, she managed to re-negotiate her lipo post-op girdle “sentence” from 24/7 to 12/7, primarily while she’s sleeping. Man, she should have been a lawyer or in sales. 

While at the clinic we had the privilege to meet Preston Walker, one of the advocates working to spread the word on the safety and effectiveness of stem cell research and therapy in the US. He’s a wonderful, humble, honest Fort Worth police officer who was thrust into the spotlight in DFW as a result of the high profile fundraisers hosted by the FWPD and media coverage. He along with Richard Humphries were among the first patients to offer up themselves as guinea pigs for testing much of what is now part of the stem cell therapy treatment protocol like harvesting stem cells from fat (via lipo), number of treatments, and other experiments that are making their way into the treatment regimen. Preston is also doing great things with Texas State Representatives/legislators to get things moving for MS and disabled patients across the state. He’s a stem cell celebrity even though he joked today that “I’m just a cop from Ft Worth” that’s trying to help others through his courageous journey. *Plus, he is Preston WALKer so he fits into today’s theme. 

Bonus round: given today’s theme of ‘walk’ I wanted to share a site that we see often to and from the clinic. It’s a scene outside of their schools here, which look more like prisons due to the concrete buildings and barbed wire fences. Like most school campuses, the buildings house ranges of grades but either by design or lack of choices, the students uniforms match the color of the school buildings. Hey, I like organization and color coordination as much as the next person, but it’s a bit over the top. Regardless, I’ll try to get more pictures or video for a later post or final montage but for now enjoy the pic of the kids WALKing home from school. You can kind of make out the school building in the background. It’s hard to take a picture with one hand when you’re concerned that the van driver is going to kill everyone inside. Yeah, he’s an excellent driver. 

Chao for now!

Humbled and blessed,

Matt

*Save your comments about that greeting. If you were here for 10 seconds, you’d quickly learn that this is their casual way of saying hello. Kind of their version of “what’s up?” or “g’day mate”. 

(“hey, I remember this place…” -Andrea’s stem cells being reintroduced into body)

(“OMG! That creepy gringo won’t stop taking our pic.”)

Cheers from Panama - 

Funny thing about relaxing — it’s difficult to find the time to get up and do non-relaxing things. So we just followed Dr’s orders and took it easy with the amenities in and around our condo building. This may sound like punishment to some, but if you’ve been following along you’ve seen the incredible rooftop pool area and heard us mention that we’ve got some of the area’s best restaurants within walking distance. 

We kicked the weekend of chillaxin’ off by sleeping later than we have since we were in our early 20’s, waking up to some coffee and cheerios, and a quick call to check on the kiddos. We then agreed that it had been too long since we had been to the pool, at least a good 25 hrs or so. It was a gorgeous 87 degrees as we read, relaxed and listened to some good tunes with the Pacific at our back.

After hitting snooze on our intentions to head back for lunch, we packed it up and changed for dinner. We headed around the corner to Market, one of the best restaurants in town by all accounts. It’s a quiet, cool atmosphere that’s part specialty steakhouse, all delicious from the appetizer to double desserts! If we hadn’t been so content people watching and hanging out, we might have noticed the less-than-stellar service that’s so common here in Panama. We’ve been told they’re just now learning how to be a tourism-driven country, so we’ll give them a break. Plus, we can barely communicate with the locals so it makes it a bit difficult to get our point across. If it can’t be communicated through the rough Spanish I learned while waiting tables at Abuelo’s, we’re out of luck. 

[Slight tangent] Speaking of language barriers, we had a funny run in recently that severely exposed our lack of Spanish understanding or speaking. The building we’re in is really new and thus many of the condo units are still being finished out as they’re bought up. One such unit is directly across the hall from our unit. One afternoon after returning from an outing we heard a desperate cry for assistance coming from inside the unit. It seems a worker somehow locked himself inside the unit and was jiggling the handle, banging on the door and asking for help. I tried to let him out with no luck but didn’t know how to tell him I tried. Instead, he thought it was someone trying to help that was then ignoring his cries, which continued even louder as he sensed help was near.

I had no idea what to do until … BAM! … I remembered that the handy man had recently called me about a former hot water heater incident in our condo and he spoke perfect English. After dialing a wrong number or two, I reached him to let him in on the chaos on the 33rd floor only to learn that he wasn’t working that day. Doh! I decided I would take my chances at the security desk although I was reminded daily that we didn’t understand each other without significant sign language. Luckily as I was waiting the handy man had put in a call to some folks in the building and they came to this man’s rescue. 

[Return from tangent] We decided to repeat the sleeping in like it was 2001 and hit the ground running … to the grocery store. Riba Smith, here we come. We made our list, caught ourselves a taxi, and headed to the grocery store to stock up for the week. The grocery store is always an adventure as you see some interesting characters, figure out which crazy non-American brand looks the safest, and payout without getting arrested (they seriously investigate any bill over $20, so much as to document your passport info and phone #). We hailed a taxi, unloaded and figured the rain was the sign we needed to relax indoors today. No tv, just iTunes Genius playlist, reading, relaxing and a game of Phase 10 compliments of my sweet co-worker Allison Kukuk. After a few false starts, we got the rules down and had a great time talking smack and trying to beat each other at this fun card game. It’s been a long time since we’ve had this much time just Andrea and I and it’s wonderful. 

That’s about it for the weekend. While some points along the way have been a bit slow and border on boring, we’re soaking up all of the time to ourselves and doing what we can to enjoy every minute. We know this is a once-in-a-lifetime opportunity and we’re both grateful and humbled to be on this adventure. Thank you to all who made this possible. 

Humbled and blessed,

Matt

(appetizer at Market … mmmmm good.)

(Andrea’s meal … jumbo jumbo shrimp)

(My meal at Market … grilled Corvina)

(This is how you make hot dogs nutritious … fresh tomatoes and romaine lettuce)

(Coffee and cards … game on!)

Given the daily routine, it’s starting to feel like Groundhog Day. It’s not that having a routine is so different from the life we put on ‘pause’ to come down here, just the amount of free time to relax, enjoy, and recuperate. I know, cry me a river, right? 

Good vibrations: Today began with more PT with the greatness of Ivan. In case you missed it, check out the music video from Wednesday’s PT. I’ve actually been so inspired and motivated by watching Andrea get her workout on, I started training again last week. Taking today off to get some more video reminded Andrea she likes it when I’m working out in another part of the gym. I think I know her too well and eventhough I’m saying the same thing as the pro Ivan, it sounds like I’m being bossy. Point taken…I’ll be in my corner from here on and let Ivan record the video. 

Make it a double: Today also included the first of 3 double shots. Until now, Andrea’s injections have been spinal injections of stem cells from cord blood. The purpose is to seek and repair damage done by Andrea’s whack immune system due to MS. When all is said and done, she will have received 8 of these intrathecal injections of cord blood stem cells. Today’s extra injection was an IV containing Andrea’s earlier extracted stem cells via lipo. As she understood it (I was in the waiting room), these stem cells are reintroduced in order to “stop [her] immune system from attacking her brain.” In case you don’t know or remember, MS is an autoimmune disease that causes your immune system to attack the protective coating around your nerves (myelin) in the central nervous system, effectively disrupting the signals from your brain to the rest of your body via your CNS. 

I’d like to use a life line: We decided to order in tonight and figured what better way than to support a former favorite client, Pizza Hut. After a couple of awkward ordering incidents, I decided it was time to leverage the professionals at our disposal. So we called Vivianne, one of the amazing front office professionals at the Stem Cell Institute who has told us time and time again to let her know if we need her help. Well, we did and she got us two medium thin crusts to our doorstep in 30 mins or less. It was awesome to use our ‘phone a friend’ lifeline. 

This weekend is highly dependent on how Andrea feels. They warned that she may feel a bit rundown as the double shot of stem cells can leave your body worn down in a protective mode as the stem cells do their business. If we can get out, we’re hoping to go explore one of the local marketplaces. 

Humbled and blessed,

Matt

(outside of the hospital where the Stem Cell Clinic is located)

(our daily chariot driven by one of the, um, “bravest” drivers I’ve ever seen. One way street … that rule applies to other drivers in his book)

(little taste of home)