Author: Amy

one step at a time

Amy 7 Comments

As most of you know, I’m new to this whole blogging thing. With that being said, I think this is my first case of writer’s block! Kidding, but not really. All joking aside, I have been thinking about what I want to share and the best words to describe what has been going on since the last update and I’m struggling with the words. I’ve asked Stephen to give me some help and describe in his own words how he is feeling. That was even less helpful. All I can truthfully say is ya’ll better be glad I’m the one writing; this update would have been over in two sentences otherwise. He only got through high school English (hope you are reading this Mrs. Hicks) with a little help from yours truly. But with all sincerity we have some exciting news to share.

This week marks the beginning of week seven since Stephen’s last treatment in Panama and we are happy to say YES – he is seeing some changes! I noticed it a little over a week ago; just something subtle. He seemed to be getting around the house a little easier, walking a little more quickly. The first thing I really noticed was him stopping in the middle of the living room to pick up a dog toy. Bending over and picking stuff off the floor can be challenging because balance is a big issue. Typically he would just leave the toy. I didn’t think too much about it at the time, but then I noticed he was walking a little faster (I use this term loosely) but yes, faster. And then a few mornings later I got the best text from one of his co-workers. It said, “Girl…I saw somebody out of the corner of my eye blow by my desk….when I looked it was Stephen. I told him, you haven’t moved that fast since I’ve known you.” He went on to say he was so excited he almost did cartwheels! So YES, there are noticeable improvements with his walking. Others at his office have noticed the difference too. It is hard to see the small changes since I see him daily, but it is noticeable to most people who know him. And my oldest question, “how do you feel?”, gets a new answer. “Just different, I can’t explain it.” I’ve tried to get more descriptive words from him, “what do you mean when you say different?”, but that is all he can come up with. He does say his feet feel less numb and overall he is just a little less fatigued. He has continued with his physical therapy (therapist has noticed his walking has improved) and working out on the other days either at home or the gym. He even went to the grocery store with me on a Saturday, after the gym and walked the whole store. I can’t remember the last time he did that. And he wasn’t even rushing me or complaining about shopping. This is HUGE.

To say we are excited is an understatement. We can only hope that changes will continue and improvements will get bigger and better. He had a follow-up with his neurologist a few weeks ago and his examination showed no real decline since the last appointment 10 months ago so that is always encouraging news. The doctor won’t say too much about the stem cell treatment. He has other patients that have done it and have seen some significant changes, but that is about all he really says. Stephen is scheduled to receive his routine infusion in early November. This is a new MS treatment he started a little over a year ago. It consists of 2 infusions (8 hours each) two times a year. This coupled with the stem cell treatment is hopefully the perfect cocktail!

We continue to feel so blessed by all those around. The true concern, interest and overall thoughts and prayers are more than we could have ever imagined. The changes we were so desperately (cautiously) praying for are happening slowly, one day at a time. He’s still not quite ready for that marathon, but he is a few steps closer. Who knows what the future will bring?

Here are a few videos to show the difference in his walking!!! Please forgive my basic video skills. The first video is from Stephen walking on July 26 of this year. The second is from just last week – October 15, 2018!!!

xoxo,

Amy

Counting the Days

Amy 4 Comments

Hey, remember me? It has been a couple of weeks since my last post. Nineteen days exactly since Stephen’s last stem cell treatment. Aaaaaand, I know you are dying to ask the big question! “How does he feel?” Well, nothing major to report as of yet. He is feeling the same for the most part, BUT it is still early. His doctor said to watch for improvements anywhere from 2-8 weeks. It’s important for him/me to be realistic. He isn’t going to just jump out of bed one morning ready to do a triathlon; hence realistic expectations. The changes will be subtle and improvement will be progressive. He’s watching for improved balance and an overall increased energy level. It seems hard to understand how he will measure those things from one day to the next, but it’s also hard to explain in words how the MS makes him feel overall. So I’m trying not to ask him daily, “how do you feel?” I said I was trying – didn’t say it was happening.

He’s following the doctor’s orders. Cleaned up his diet, eliminated alcohol for the time being, continuing his physical therapy and so on. He went to the gym with me last night for the first time. He won’t say it, but I know it’s hard for him to put himself out there at the gym. But he did it anyways. Every time will be easier and despite what he may think or feel, no one is watching him. Except me of course. Part of the protocol is to increase his strength and muscles. His PT focuses more on stretching and balance but not necessarily strength training. So we have to do this together. Pretty sure he hates me being his trainer….this needs an emoji!

I failed to mention on my last post that he got sick on our last day in Panama. We are almost 99% sure it was food poisoning. What are the odds? Don’t answer that. It was touch-and-go whether or not we were going to make our flight home the next afternoon. And when I say touch-and-go I mean I almost left him there. Kidding! Kind of. He will tell you I am the WORST nurse when it comes to this (pukey) kind of sick. No exaggeration. I called the doctor immediately to make sure this wasn’t a reaction to the injection and she assured me this was not a side effect; just bad luck. She sent some anti-nausea meds to the hotel and we were able to make the flight. That is the thing with MS that most people may not know. It is super hard for his body to handle things like food poisoning, or a stomach bug, common cold or fever. We are a pretty healthy family overall. He rarely gets sick but when he gets anything, it hits him HARD. Fevers are the worst. They affect his ability to walk to the point of needing a wheelchair. He was so weak leaving Panama the doctor insisted he use a wheelchair in the airport. He didn’t refuse or fight me, so I know he was feeling bad. He was feeling too bad to worry what about what he usually worries about. “Everyone will look at me.” “I don’t LOOK like I need a wheelchair.” “Someone else needs it worse.” “I can manage.” These are a few thoughts that come to mind. We have both learned over the course of his MS journey that doing what is best in that moment is the only choice. Who cares what strangers will think when they look at you? That is part of living with MS or any other debilitating disease. It is a learning curve like anything else. Stephen has learned this and he is slowly coming to the point where he feels comfortable accepting the help when needed.

I won’t lie. I did dream about our return trip being life changing. I KNOW, BE REALISTIC. But I did think it. I saw him walking through the airport with a pep in his step; a new man. So yes, it was a reality check. But it hasn’t stopped me from believing this is going to work. I believe in modern medicine, science and the power of prayer. I believe this is going to change his life and all those other people’s lives also. So keep believing with me.

xoxo

Hasta la próxima vez Panamá

Amy Leave a comment

Wow! what a week. We are home! So far this morning I’ve taken Harper on a walk, started my second load of laundry and just sat down with a cup of coffee and my laptop. Now where to start. This week seemed like the longest week ever so I’m sure I’ll leave something out but let me give it a go…

First let me say the whole experience with Stem Cell institute was great. Extremely professional, organized and top-notch facilities. From the drivers to the nurses to the coordinators to the doctor! All receive an A+.

The city of Panama was a bustling metropolis. With tons of high-rise apartments, office buildings, hotels and restaurants. Lots of green space and trails for walking. We had a great water view from our room and were able to look out every morning and see all the ships in que for their trip through the canal. Not to mention all the mountains in the distance. It was a great city to visit. The people were kind and warm and were always happy to share the history of their city.  We spent our days doing the doctor appointments, physical therapy for Stephen(gym for me) and relaxing by the pool, reading etc. Usually followed by dinner and an episode of Ozark (if you are not watching it, go watch it now!) Now that we know what to expect we have a few other sites we want to visit next time. (Annddd we both dediced we are getting Rosetta Stone/Spanish for Christmas!)

 

The actual treatment went like this: Tuesday- Met the doctor, did blood work, went over medial history and reviewed current medicine. Wednesday- Intravenous infusion + 2 perilymphatic injections, followed by 1 hour of physical therapy. Thursday-Intravenous infusion. Friday-Intravenous infusion + 2 perilymphatic injections, final medical evaluation and discharge, followed by 1 hour of physical therapy. Sounds so simple right? It was actually extremely quick and painless(for the most part). The infusions took about 18 minutes, and the injections were quick but did have some noticeable injections site soreness afterward.  No other side effects to speak of. Doctors orders were to take it easy, hydrate-hydrate-HYDRATE…..and that was it. And we did just that. There are suggestions about keeping a healthy life style: limiting processed foods, processed carbohydrates, increased fruits/vegetables and little-to-no alcohol consumption with the exception of red wine(limited). The doctor said to look for signs of improvement anywhere from 2-8 weeks . Reported improvements are typically overall increased energy, less fatigue, improved balance, strength and bladder functions just to name a few. All cases are different and Stephen’s results are his and his alone. A follow-up treatment is recommended but varies in timing depending on his overall improvements.

The whole trip seems like a dream of sorts. This is NOTHING we ever imagined doing. I was asked if it was weird getting medical treatment in another country. And I guess it wasn’t weird, because like I said, it was all so professional. It was just different. We are usually only at the doctor when we are ill, or doing a yearly check-up, or something isn’t right. And for most of us there is so much time waiting for the doctor, feeling irritated and then  rushed. It was just a different experience. Everyone who was visiting the clinic was there for the same reason. It was so well run and we always felt like we were getting their full attention. We met so many families from all over the US and it was humbling to hear their stories and what brought them to Panama. We heard first hand accounts of positive results and just the aura of hope around everyone. It was emotional and eye-opening and for lack of a better word…promising.

So for now this in the end of the actual treatment phase for a while.  Now we just have to wait and let the stem cells do their thing. Follow the doctors orders and pray this works like expected. Stephen is feeling excited about the possibility of the new changes and I’m sure he will be sick of me asking every day “soooo, do you feel different today?”  But it is part of the journey. So many things left to be experienced and only time will tell. So please keep the positive thoughts and prayers coming. We BELIEVE!

xoxo

First day!
view from Amador Causeway
Treatment #3
Casco Viejo
Treatment #2
Pineapple juice! cheers!
Trainer: Arnaldo Gonzalez
dinner with a view
First day!
Treatment #3
Treatment #2
Trainer: Arnaldo Gonzalez
dinner with a view
Casco Viejo
Pineapple juice! cheers!
view from Amador Causeway

 

All the Feels

Amy 8 Comments

It’s Labor Day or just Monday here in Panama. I hear we are having some much needed rain at home. We may be getting it here soon! We are sitting out by the pool under some seriously threatening clouds. We just got back from taking Caroline to the airport. She is boarding the plane as I type. I kept it together; no tears! We hated that she had to go home but duty (school) calls! We enjoyed a few days together seeing a few sights and eating our way around the city!

This experience is becoming more and more real by the minute. First appointment is tomorrow at 9:00! A lot of people have arrived at the hotel in the last few days. All of them are seeking the same thing we are. A miracle. We’ve seen people with spinal cord injuries, MS, children with severe autism and cerebral palsy just to name a few. It’s heartbreaking. Emotional. Stephen looks good compared to some. But we all want for things to get better. Is that bad? Everyone’s struggles are different and it’s hard to put it in perspective. All these families want to see their loved ones better – whatever that means for them.

So I didn’t cry leaving Caroline at the airport but I can’t stop my tears as I’m writing this (out by the pool behind my sunglasses while Stephen is next to me reading TxAgs). So many emotions. So many fears and hopes. These feeling have completely caught me off guard. I think it’s seeing these parents with their kids and knowing the hope they are all feeling is real and HUGE! Praying for ALL these people and Stephen too and just feeling blessed to be here.

xoxo

we made it

Amy 6 Comments

After a long day of travel, we are HERE in Panama City, Panama. Today marks the first day of this new journey. Well, actually Tuesday, but we are going to say today. We had an uneventful flight from Houston to Panama. A slight 30 minute delay, the 2nd to last row on the plane...right in front of a guy who TALKED THE WHOLE WAY HERE. Yes, 4 hours, he was an expert on everything. Can you hear my sarcasm?? It felt like the longest 4 hours of my life! But besides that, easy plane trip.  The ride from the airport to the hotel was smooth sailing and our driver gave us some good details about the city. Apparently it is rainy season here, scattered showers and lots of humidity; feels just like home. We are checked-in and resting. I’m thinking dinner and an early night is our plan. Someone is a little tired. Caroline said, “we can’t wear him out our first day here Mom….”. So I guess we will take it easy on him. And just a side note. Yes, they have Uber here, and all your fast-food chains, but no Yelp. So we are going to have to pick our restaurant old school style.

We are feeling so excited and grateful at this opportunity. I know I keep repeating myself, but we are still in awe of all the thoughtful messages, texts, calls, donations, and concern! It makes this whole experience seem so surreal.  We know this would not be possible without the help from so many and thank you just doesn’t seem to be enough.

It is crazy to be in another country getting a medical treatment that has the potential to offer so much to so many people, and not just for MS. We have amazing doctors and medicine in the US, not to cause a debate, but it blows my mind that we can’t do this at home. So enough about that. This was just a quick post to say HI and we are HERE. I will update with more about our trip soon. Please continue to keep us in your prayers. They are being felt big time. xoxo

 

 

overwhelmed; the good and the bad

Amy 2 Comments

I’m feeling overwhelmed, who doesn’t feel that way sometimes? In many different ways; the good, the bad. I can honestly say that  Stephen and I are SO overwhelmed with all the positive feedback and support we have received on the blog, Facebook, GoFundMe. I never imagined how my words and his situation would have such an impact on so many people. Our hearts are so full.  We are still trying to take it all in so please let me give out a formal “THANK YOU”  for everything. It is an amazing feeling to have so many people be interested and concerned about your situation.

And on a more serious note, I have been working with my friend Ginger the past few days on all things “social media”, and let me just say THAT is the true meaning of overwhelmed. I am not sure what and if we created the right pages? profiles? I’m not sure if we are supposed to “like” or “share”. We have been laughing while trying to navigate a world we  know just enough about to be dangerous.  We didn’t learn any of this in college…oh wait, there was NO SOCIAL MEDIA way back then. Seriously though, I feel like we just took a crash course and squeaked by with a “C”.  What an eye-opening experience. We thought we were savvy, but this lesson proved us wrong! So yes, we created a FB Page, SJ’s Hope, that you can “like” and it will have links to this page and any other important information…we think. Either way, we had a good time and got to laugh at ourselves for a little bit.

Being overwhelmed is something we all know about. We all have something that is weighing heavy on our hearts or minds. Sick kids, aging parents, jobs, health, the list can go on forever. I feel this word come across my lips daily. I want to quit something daily. But I don’t, I can’t….why? because “Stephen has MS and he never complains or quits, anything”. That is truly my life. I catch myself complaining about anything and sometimes he will offer me a kind word of concern, usually a joke and sometimes the “are you kidding me?” look and that usually puts it all into perspective. Living with someone with a chronic illness will keep you in check. That is for sure. But that is what helps, the reality check of it all. Knowing when to let go. Be happy. And now I’m so happy and excited. The possibility of something great is so close. I am overwhelmed! But this time, it is with optimism for the future.

Traveling Tightrope

Amy 9 Comments

Happy Sunday! What a week. We celebrated Stephen’s birthday and our 22nd anniversary this week. August is our busiest month. Tons of family birthdays, anniversaries and back to school. Caroline went on one last weekend getaway with friends before school starts next week. She’s going to be a SENIOR. I think I’m still in shock. It’s so cliché, but seriously where does the time go??? Like most Sunday’s I’ll spend the day getting stuff done around the house to get ready for the next week.

The Panama trip is just two weeks away and I have some things I need to start preparing for. I’m also the event planner and trip coordinator in the family fyi.  This kind of stuff is always a reminder of the challenges Stephen faces with traveling.  Spontaneous travel is not something we can do. There is some research and planning that has to go into our trips. And not just what sites we want to see and things we want to do. But more specific….how big is the hotel? Is there a lot of walking? Can we be close to the elevator? Is the city a walking city? Do we drive or fly? Bottom line…can he go and get around or will it be too much trouble? We take a few trips every year, usually to our same spots where we know what to expect and it is fairly easy to navigate. Large airports are exhausting, as there is lots of walking, waiting in lines, standing, and more walking. And to top if off, there are super small seats with no leg room…cue the leg spasms. And forget it if we have to change planes.  I may have strongly suggested he use one of the airport wheelchairs on our last trip. He offered a little resistance, but he was out-numbered. I know it’s a pride thing, but sometimes it is the only option. Not to mention he doesn’t like my wheelchair driving.

It didn’t happen overnight, but gradually over the years. Learning his limitations and planning for them has become our normal. Any event in a large venue is usually something we pass on.  Large resorts are a no-go, no hiking or water sports, no walking tours, and for sure nothing that is standing room only.  These questions usually determine where or if it is worth it. There are times when we don’t even consider the trip because we both know it is too much or that it just won’t be doable.  Our network of friends get it, and they are all so helpful and thoughtful when inviting us somewhere. But I would be lying if I said I don’t dream about the day when this isn’t our reality. I have dreams of an easier life for Stephen.

The stem cell treatment offers some great hope. We know it isn’t guaranteed that he will see any improvement, but we are praying and we have hope. HOPE for some relief, some change, being able to do the simple things that so many of us take for granted. Just hope.

Birthday!

Amy 1 Comment

Hi everyone! Today is Stephen’s 46th birthday. Yep, I’ve got myself an older man….by a few months. We are getting up there….creeping up on the big one. I won’t say it or put it in writing; makes it seem less real. ha! No major plans for today. He had physical therapy, work, and then we will go out to a nice dinner. His choice, but I’ll offer some suggestions, of course.

Ironically enough, I was with some girlfriends last night at a planning meeting for some upcoming fundraising events. One of my friends mentioned that her friend’s son was just diagnosed with MS. And she kept saying “…he’s just so young” and I asked…like a teenager? How young are we talking? MS isn’t as common in younger people so I was really curious. Then she says, “YOUNG!… I think they just had a baby”. I’m like “30ish” right? YES, she said.  That IS YOUNG. Seems like ages ago when we were celebrating thirty! Exactly 16 years ago… Stephen was diagnosed right after his 30th birthday. Hard to believe it when I think about it that way. I guess people said that about him when we learned of his diagnosis. “He’s so young, and they have a young baby…”

We celebrate him and his birthday every year, without fail, but it makes me wonder… but I’ve never asked him. Is it a bad reminder too? Does it make him think “this is the same time I learned of my MS and the constant reminder of what this disease has made my life look like, what it has done to my body?” I’ll say it again, he isn’t sitting around dwelling on this crappy hand he’s been dealt. But it has to make you think it is kind of a bittersweet celebration. Yay! I’ve made it another year, another year to be with my family, work, LIVE….and another year of MS.

But tonight we will go out. Have a nice dinner some wine and of course he ALWAYS wants dessert. We will reflect on the past year. The good times, the hard times, our family, friends and make a toast to another year. Even with MS, life is good…but always hoping it can be better. xoxo

making plans

Amy Leave a comment

After a lot of consideration, consulting with his doctor, weighing the options, saying prayers, asking for guidance, the decision was made. Stephen is going to get stem cell treatment in Panama.

It is exciting and scary and promising all rolled into one emotion. It is expensive, no insurance coverage, and no guarantee it will work, and we have to leave the country… Wow, this seems awesome, sign him up. Right? Seems like a long shot but the more we talked about it and read about it we realized money is the only thing we stand to lose.

Not to sound flippant; NO..we don’t have tons of money stashed away for emergency stem cell treatment; YES, we have a daughter in her senior year of high school making college plans. Along with all the other financial responsibilities and stress everyone has. Absolutely NO stress here (can you hear the sarcasm)? But we figured we can find a way to make it work. The “what if this works” outweighs “how can we afford this”.  What if he passes on this treatment? How will we know if it can help if he doesn’t try it? Now is the time. 15 years living with MS and this could be the chance to see a difference in the life he is living and the future.

Doctors Approval   √

Appointment Set  √

Passports Updated √

Flights Booked  √

Next Stop PANAMA…√

Are you saying there’s a chance?

Amy Leave a comment

Yes, we are still in the middle, but there is something happening on the horizon. Something new and exciting…a chance… hope for a different future. Hope for what? Chance for what? Over the years Stephen has participated in different drug trials, treatments, etc… He sees his neurologist frequently, follows all of the recommendations and takes all the prescribed medications, but still the disease is progressing. They make no claims otherwise, it is just part of it.

Stephen came across some treatment a few years ago involving stem cells. We went to the informational meeting, toured the facility in Houston but ultimately decided it wasn’t something he felt comfortable with, for multiple reasons.

Spring 2018: A close friend was at a work event and small talk with a colleague of his turned into MS talk, which turned into….”…my dad has MS and he got stem cell treatment and now he is walking and has his life back”.  Ok, there was more to the conversation than that, but you get the idea. Our friend called Stephen and filled him in on all the details, shared numbers and we started doing a little research on our own. So many  things to consider, so much money, no guarantee, not approved in the US, just to name a few. But stem cell treatment gave this man his life back, his next step was a wheelchair. This sounds so familiar, maybe now is the time to take some risks?

What’s the next step?