Happy Holidays!

Wow has time flown by since I've been back from Panama!  I have been keeping so busy that I totally forgot to update everyone on how my family has been.  I have been dong pretty good.  The last couple weeks have been difficult with Grandma Betty being gone.  I miss her so much all the time - especially with the holidays!

I saw Grandpa Clif at Christmas and he is looking good! I know he appreciates everything his Clay Center friends and church do for him (and with him).  As always, I have such a great amount of respect for the city of Clay Center as well as all Grandpa's friends and family.

I have been doing great.  I've noticed some subtle changes as well as some more extreme changes.  I haven't had a migraine since I've been back.  I've only had a few muscle spasms, where before the treatments, they were a significant problem for me.  My fatigue is better overall, but the past couple weeks I have been tired.  I'm sure part of it is because of all the holiday stress taking a toll on me.  It's so strange how sometimes I am more tired than others - all within a day's span.  But like I said, the fatigue is a lot better overall.

I met with my neurologist last month, and we had to rearrange my schedule of vitamin supplements I've been taking since the stem cell treatments.  I was taking a few things that were impacting my hormormones and making me a lot more emotional than normal.  Good thing my neurologist is so in tune with my body as well as the latest MS research.  She really is wonderful!  Since the Stem Cell Institute said I should see results around the 6-month mark after treatment, so I've decided to have MRI's done around ths time to see if the lesions on my brain are healing.  That would be such a miracle if they were!  We don't have a date set in stone but are thinking it will be in March sometime.  I will definitely let all of you know the results when I find out!

As always, I appreciate everything each and every one of you has done to help me get to this point.  I really could not have had the treatments done without the support (financially and spiritually) from everyone who helped me.  This Thanksgiving and Christmas, I sure had a lot to be thankful for - and still do!

Stem Cells at Work

Well it's been a couple weeks since I've been home, and I think the stem cells are starting to work.  I've only had a few muscle spasms, as opposed to multiple ones a day, and I've definitely had a lot more energy.  The first couple of days home, I was very tired from the travel, but I felt much better after that.  I know the doctors say it can take up to 6 months to feel the full effects of the treatments. I'm really excited to see what each and every day brings. 

I am sad to report that Nick has not been doing well since I've been home.  He had an infected pilonidal cyst that had to be removed by a general surgeon.  The poor guy has a pretty big wound that has to be packed several times a day.  Good thing I have more energy than I used to so I can take good care of him.  His recovery has been about a week so far, and the doctor predicts it will be another week before he can return to work. 

So I haven't decided for sure, but I have been thinking that maybe I might look into working part-time.  It really is difficult since I never know how I'm going to be feeling, but I think something part-time would be ok.  Maybe the stem cells will continue to kick in and then I will be feeling like my old self again.  I will keep everyone posted on the job situation as it unfolds...

DAY #15 - Last Day in Panama!

This morning Franklin and Luchita picked us up from the hotel and took us on another Panama adventure.  Poor Luchita wasn't feeling the best and her voice was hoarse (not to be confused with the animal "horse," right Franklin and Luchita? hee hee)  They drove us to a gift store in Old Panama where we'd been once before and love.  Franklin waited in the car for us while we took our time picking souvenirs out - what a gentleman!  As we were leaving Old Panama, we got to drive about a block away from where Franklin was born.  It was really neat to hear both of their stories about growing up in Panama as well as their continued education in the States and then back to Panama.

Before lunch, we had time to visit the Bridge of Americas entrance, where there was a beautiful monument commemorating the Chinese culture's influence in Panama.  It was built in 2004 and was meant to celebrate 150 years of the Chinese living in Panama, starting with their influence working on the railroad. 

From the monument, you can see the amazing bridge that connects the Americas to each other - 2 continents together as 1!  What's really interesting is that there is talk about tearing the bridge down once the Panama Canal is expanded.  The ships that will go through the canal are so tall that they might not be able to fit underneath the bridge.  Sad! 

 

After touring the bridge entrance, we had lunch at Tinajas, which is translated to mean little, clay vases.  I tried the coconut shrimp, and my dad tried corvina (a type of white fish like sea bass).  They were both very good and were a great experience to try!



DAY #14 - Last Treatment!

Today was treatment #5-the last one!  I am still really tired today, but I am feeling better than yesterday.  I'm definitely not as grouchy as yesterday so that's good.  They did my last treatment this morning, and again it tasted like peaches.  So to sum up the week, I had 2 treatments of umbilical cord stem cells (about 5 ml each) and 3 treatments of adipose derived stem cells (about 20 ml each).  With all the treatments combined, I was injected with approximately 100 million stem cells - 40 mill cord and 60 mill of of my own.  The viability rates were 75% for my own cells and 80% for the cord cells.  I should say that's pretty darn good!  Now it is just time for the waiting game since it is different for everyone with how they heal.  Even if I don't have some miraculous healing right away, I am hoping to go months without an exacerbation.  That would indeed be miraculous for me!       

Below are Dr. Barnett (who I talked to on the phone before we came) and Dr. Paz.  Like I've said before, I am so impressed with the health care team at the Stem Cell Institute!  Dr. Paz created a plan for me to follow when I return home - including lots of vitamin supplements based on my blood work.  It turns out I have some adrenal functions and cortisol levels that are off but can be easily managed.  He also gave me some pills called Stem-Kine that enhance stem cell viability and encourage more production.  The Institute follow up with me every couple of months to find out how I'm doing.

I don't have any pictures of them, but I have to say that I met the nicest people today from Brazil.  We are already friends on facebook, and we have each other's skype information.  They have inspiring stories, particularly about their experiences with MS.  You know how you meet people and they just give you a good feeling?  That's these guys to a tee!  I really look forward to keeping in touch with them and hear about their journey with the stem cells.

Tomorrow we have lunch with Franklin and Luchita.  I can't wait to see them again - they are great company!  Maybe I can talk them into posing for a picture or two! :)

DAY #13 - Treatment #4

Sorry I haven't written in a couple days, but I have been really tired.  The doctors say that is totally normal when getting stem cell treatments.  It's like injecting your body with a whole army of litle guys that destroy all the bad cells.  It's a war going on in my body - hopefully the good guys win!

 

Today was treatment #4!  It tasted like peaches again.  What's really crazy is that the stem cells were actually peach-colored today.  Normally they are clear or have a really little tint to them.  Dr. Diaz says that's normal for some people's stem cells to appear that way.  I did learn that I have very good stem cells.  They even have enough stem cells for a second treatment if I ever want to come back and have a "booster."  They will store the cells for 2 years, but after that they cannot guarantee that they will still be viable.  I wonder how many people's stem cells they have stored... 

I also learned that they guarantee 70% viability of the stem cells they inject in your body.  This means that they only use the cells that are normal, productive and have survived the harvesting, screening, counting, freezing, and preparation.  That's pretty amazing considering how many processes they have to go through! 

 

I'm definitely feeling homesick tonight.  In fact, I'm a little on the crabby side.  I didn't get to talk to Nick all day and I miss him lot's.  I'm tired of being tired.  But most of all, I can't wait to return to the normalcy of my American life.  I wanted to see a movie tonight but not sure I can make it through one without falling asleep.  Hopefully tomorrow brings better energy! 

DAY #12 - Treatment #3

Today my cells came home, only in better condition.  Today is the first day they used my own stem cells that they harvested.  As you can see, my dad was very excited too and decided it was necessary to make a sign for them:

Again...tasted like peaches during the injection.  I just think that's so funny!  Nothing else to report - it went just as well as it could of.

Today was my last day of physical therapy.  She worked me hard, as usual, even though I kept complaining that I was tired.  I'm pretty sure she didn't care at all.  She just loaded up the weights on my legs and told me to keep on going.  It was probably good for me though haha.  She did give me a print-out of all my exercises to take home so at least I have a plan of what exercises she recommends I keep doing.

Tonight my dad and I visited the stem cell lab, called MediStem.  It is located in Clayton, which is the part of Panama that used to be the U.S. military base.  The lab is located in one of the old barracks - a really cool building located on quite the piece of land!  Everything is so green because of all the rain Panama gets. 

 

We met with two of the lab employees who explained all the details of how they harvest and analyze the stem cells.  The umbilical cord stem cells are thoroughly screened on several occasions for endotoxins and infectious diseases.  They only keep about 30% of the umbilical cords that are donated because the other 70% doesn't meet the quality control standards.  The adipose-derived stem cells are also screened for endotoxins and washed several times before being counted.  They are counted with a laser because it is more accurate that the human eye.  Here is a video with more information about the actual process of how they process the stem cells: http://apps.facebook.com/youtube-videos/watch.php?v=unAbSUhGEzk
You should really check it out if science interests you!

 

DAY #11 - Treatment #2

This morning I had physical therapy again.  She had me do stretching, cardio, strength training, and balance exercises.  I think I need to invest in a little ball that I can do the exercises with at home.
Here's from yesterday:

And today:

I've been working hard trying to get my muscles in shape!  Paola, my physical therapist, definitely keeps me in line.  I can't wait to come back to the States and work with Mandy, my physical therapist, a couple times a week.  She specializes in patients with MS and is wonderful!!  I have her to thank for getting me ready for the Panama trip.

I didn't end up having any side effects from the injection last night.  I did take Tylenol as a preventative thing to help with pain from physical therapy, so maybe that's why I didn't experience symptoms of an increased body temperature.  I did hear from some people in physcial therapy this morning that they had a headache, fever, and night sweats. Although they had the stem cells injected directly into their spine so maybe that's why.  They do things differently depending upon what your illness is, and these particular people had spinal cord injuries.

Here is an old picture of our driver, Javier, from when he used to race horses.  This picture was taken in 1981 when he won a race with his horse, Hurricane.  He was oly 13 years old and weighed 70 pounds.  Don't worry - he knows I took a picture [of his picture] to put on my blog.  Overall, his favorite horse was a filly named Paulina.  He never whipped her, just talked to her, and together they won 13 races that year.  He said he would bring me some pictures tomorrow.

I was really tired today!  From the moment I woke up, even despite many naps, I just couldn't get enough rest.  I think I forgot to mention that I burst a blood vessel in my eyeball.  I woke up yesterday morning and noticed it.  That's why I've had to wear my glasses the past couple days.  Dr. Diaz told me that it should heal pretty rapidly because some of the stem cells will probably target my eye.  Maybe the cells can fix my optic nerve while they're at it!

Today was treatment #2 at the Stem Cell Institute.  The peach taste wasn't as prevalent today as it was yesterday for some reason.  I saw the sheet that says the amount of stem cells they injected and I think it was close to 20 million.  They just used the umbilical cord stem cells again today and will use my own stem cells starting tomorrow.  When they are all finished treating me on Friday, they will give me my whole file, including labs, as well as a certificate showing how many stem cells they injected.  I'm really curious to see what the final number is!

Here's some pictures from today's treatment.  The woman is Dr. Diaz and the man is Dr. Hernandez.  They have both been so wonderful!

 Tomorrow I have my last physical therapy session, treatment #3, and my dad and I are going to take a tour of the stem cell lab.  I can't wait to hear all about how they work with the stem cells!

DAY #10 - First Treatment!!

Today I had physical therapy for an hour and then my first stem cell treatment! Today they used umbilical cord stem cells, and they will again tomorrow.  These stem cells come from live healthy births and are donated to the Institute for use.  Wednesday, Thursday, and Friday they will use my own stem cells that they harvested last week.  I still don't know the exact count of how many stem cells they were able to harvest (hopefully above that 40 million mark), but hopefully I will find out tomorrow.

So about the first treatment....what a cool experience! Let me walk you through it as it happened for me.  Here's the front doors as you walk up to the Stem Cell Institute.

Our driver, Javier, helped me celebrate my first treatment by making firework noises and pretending like they were going off above his head.  He is the one I mentioned in previous postings that used to be a horse jockey. 

There is a little waiting area inside these front doors.  They have the most beautiful orchids!  Past the waiting room area is the hallway (notice the hand sanitizer on the wall in every room).

At the end of the hallway is the treatment room.  It is complete with 2 reclining chairs and an exam table.  I've never had to sit on the exam table though - just the comfy chairs.

So the actual injection of stem cells only took about 2 minutes.  Dr. Diaz put the IV needle in just as she would to draw blood and then flushed the line with saline.  She then injected the umbilical cord stem cells which had a mysterious taste.  It was kind of fruity and comparable to peaches!! 

Dr. Diaz did mention that there was a possible side effect of an increased body temperature.  This could last a couple of hours and can easily be controlled with Tylenol.  I guess we'll wait and see if that happens...

DAY #9 - Chinese Breakfast, San Jose, Old Panama

This morning started off great.  I was able to sneek a picture of dad's shoes (crocs - with white socks I might add).  See what I have to put up with? Ha ha

Anyway...we met Franklin and Luchita, and boy are they great!  They took us to a chinese restaurant called Lung Fung for Chinese Breakfast ("dim sum").  I don't really know how to describe whatthey served except that they was like little dumplings filled with chicken, pork, shrimp, etc. Each one had a different flavor, texture, filling, and wrap.  Each type came in a steamed container that were on carts being pushed around from table to table.  As we were leaving the restaurant, we got to rub Buddha's belly and make a wish.

 

 

After breakfast, we took a "panoramic" tour around Panama.  There is so much history in Panama that it is really neat to explore!  While we were  exploring the Panama Ruins, we came across this woman in traditional Panamanian dress called a "Pollera."  Even though she was there by coincidence, she allowed us to take some pictures of her and her beautiful dress.  Luchita explained that the "Pollera" is often worn for traditional celebrations such as her 15th birthday or wedding.  The dress takes about a year and a half to make and costs around $3,000-4,000 because every part of it is handstitched.  She then wears about $20,000 in gold.  The headpiece is called a "Tembleque" because it trembles when she moves.   

 

 

 Not sure if you can really see the background, but she is standing in an old building that was partially destroyed in the 1600's by a pirate named Henry Morgan - yes...Captain Morgan.   This is the original Panama City, and below is the original cathedral.

 

He looted and destroyed the city, only passing by the golden altar at the cathedral because the Panamanians outsmarted him by painting over the gold.  The altar was moved to another church from the old ruins and is now residing in the San Jose church in Old Panama, paint-free.  On both sides of the sanctuary are other altars, one side which is featured below.  We managed to make it to the church just as mass was getting over and right before they locked it for the day.  We really lucked out!  What a truly breathtaking sight!

 

 

We also visited the Causeway de Amador, located at the Pacific Ocean entrance to the Panama Canal.  We drove down the road that links Panama City with other islands, built in 1913 with material extracted from the Culebra Cut during construction of the Panama Canal.  We saw many people walking, riding bicycles, jogging, and skating on the sidewalk.  There were benches where one can sit and enjoy the beautiful view.  You can see the Panama City skyline on one side and ships entering the Canal on another. 

                                   Skyline:

                                    Boats lined up to go through the Canal: (Traffic at the canal is almost as bad as traffic in Panama City! haha)

 

 

If you go all the way to the end of the road, there is a strip with restaurants, yacht marinas, and nightclubs.  In this area, you can also see the Bridge of Americas.  Since it is the rainy season in Panama, it is very cloudy and about ready to rain so seeing the bridge in the background might be hard.

 

Here's a picture of me holding tagua that Franklin took:

And here's a picture of a man carving tagua (also courtesy of Franklin):

 

 

Tomorrow I have physical therapy and my FIRST STEM CELL TREATMENT!  Yea! I can't wait to write tomorrow!! 







 



DAY #8 - Cathedral, Reprosa, & Flowers

Well it is Saturday and I'm not nearly as bored as I was yesterday.  Still coughing a little but there is a huge difference in how I feel now compared to how I felt earlier this week!  It could be that my body has healed itself from the illnesses I had...or maybe it's because orchids are everywhere down here and I love orchids.  I bet it's the orchids!

 

In fact, I learned that the national flower of Panama is the orchid, specifically La Flor del Espiritu Santo (Peristeria elata) or also known as The Holy Spirit Flower. It is best known for its ivory color petals, and beautiful blossoms.  If you look closely, you can see what looks like a dove in the middle of it.  I attached this picture so you can see how beautiful it is (but it was not taken by us).



 

So I heard from a little birdie that people are wondering how my dad and I are getting along.  Well to answer that question - pretty well actually!  We've had our moments here and there (very minor though) as anyone would do if they were together 24/7, but overall he has been a very good support system.  He has been my on-site nurse and has put up with a lot of whining when I haven't felt well.  He even ran to the pharmacy to pick up teething gel for me to put on my awful canker sore on the back of my tongue.  What a nice dad!

Today we did a little sightseeing with Jacob, a local driver we met when we arrived.  He works for the hotel as a driver and agreed to take us around to a few places.  We drove by San Jose church where the famous golden altar is, however the church was closed.  Then we went to the Cathedral in Old Panama.  This church was also closed, but we were able to park and walk around it to get some pictures. 

This cathedral is located in a plaza, sometimes called the Independence Plaza or square, named for the fact that Panama declared independence from Spain in 1821 and independence from Colombia in 1903.  There we saw local artists who set up tents to sell their handmade crafts.  We didn't buy anything there, but we did go to a craft gift store nearby.  The gift store was very unique in that it sold crafts made by local tribes.  They make baskets, jewelry, purses and bags, hats, and figurines made out of tagua.  I bet you are wondering what tagua is.  Well...it is a nut (similar to a coconut only smaller) that can be carved once it dries.  It resembles ivory and can even be painted.  It is really beautiful stuff and makes great souvenirs!

Did you know that the traditional "Panama Hat" is not actually from Panama.  It is from Ecuador and was made famous when President Roosevelt wore it during a trip to the Panama Canal during its construction.  The way to tell if it is a good quality hat is to see if it is tightly woven.  A great quality hat can be rolled up to fit through a wedding ring!  Here's a picture of Theodore Roosevelt wearing the hat (obviously I don't need to say that we didn't take it).

Also as we were walking around, I said, "Wow! Look at those beautiful flowers!"  I was swiftly corrected by Jacob.  I guess the colored parts are leaves before they turn green and look like flowers, but the actual flower is the tiny little white part in the middle.  They are called Veraneras or "Bougainvillea."  You can find more information on wikipedia's page: http://en.wikipedia.org/wiki/Veranera

 

So cool!!

We also visited Reprosa ("Treasures of Panama"), a place I've been wanting to visit for awhile, since I read about it on the internet.  It is a store that reproduces pre-Colombian artifacts that are turned into jewelry and other items.  They had some beautiful orchid pieces and other ancient symbols that represent things such as strength, etc.  Both dad and I were amazed at the quality of items we saw!  You should read the history behind the store when you get a chance: http://www.reprosa.com/indice_en.html

Looking forward to tomorrow.  We have been communicating via e-mail with my parents' neighbors' friends (Franklin & Luchita), and we are planning to eat a traditional Chinese breakfast with them tomorrow.  Maybe we will even get to do a little more sight-seeing!