Reporting From California

We are home now and very happy.  The weather is superb and we do not miss the humidity!  I wanted to let you all know what happened with Carolyn's final injection and infusion on Friday.  We had been praying since early Friday morning for God's grace and blessing for Carolyn's last injection.  We had an early flight Saturday morning and it could have really been difficult if Carolyn had a bad night.  Well let me tell you that Carolyn had a very smooth procedure and had zero negative side effects this time!  Thank God and thank you for all your prayers!  We were up before 4am and the rest of the day was a blur.  The flights themselves were very smooth.

We will really miss seeing our new friends who were going through treatment along side of Carolyn!  Benita and Carla are fighters and we will be continuing to pray for them as they complete their final two weeks of treatment.

Here's a pic taken by Carla's husband Roger.  This is from left to right: Nick, Benita, Paula, Carla, Joanna, Eric, Hazel, and Carolyn.

We can't say enough or thank the staff at CIMA Physical Therapy headed by Mrs. Paris.   They taught Carolyn how to work effectively and what to look for in a physical therapist here in California.

So I'm sure you are all wondering just how Carolyn is doing now that the treatment in Costa Rica is completed.  Well, here's how she describes it.  Carolyn explains, "at this point what I feel is that a fog has lifted.  I feel that I have more energy than before.  I'm still using the wheelchair but I am stronger and more flexible."  Let me add that after the very early morning yesterday and seven hours on airplanes... Carolyn still had strength in her legs and was not wiped out like we would normally expect.  So while she is not yet ready to sign up for the chorus line she feels a definite improvement.  The doctors have told us that the effects of the stem cell treatment will be felt at around six weeks from now.  In the meantime Carolyn will be working hard in physical therapy - continuing the regimen begun in Costa Rica.  

Thanks again everybody!

Eric and Carolyn

Week 2 - Friday Final Day of Treatment!

Though these two weeks of treatment in Costa Rica have not been easy they have gone well. I want to express our appreciation to all of you who helped us know we we not alone here - but instead we are in the company of wonderful friends and family!

As I write (I'm beginning to think in Spanish!) Carolyn is having her final injections. She had a very good physical therapy session today as well. She's really come to get close to a few of the physical therapists and we'll miss there smiling faces and their caring manner. The head of the Physical Therapy Dept explained that the improvement Carolyn has experienced thus far is due to the hard work she has done. Mrs. Paris also said that the stem cells would begin to really help in a month or so. She stressed how important it will be for Carolyn to continue the therapy for two hours per day. Please pray for God's guidance in this area... It's hard, time consuming, and expensive.

Our ride to the airport is scheduled to pick us up at 4:45 am. tomorrow and our flight leaves at 6:24 am. We have a quick layover in Denver and then straight home!

Blessings to all of you from Our God who heals spiritually, emotionally, and physically!

Week 2 - Thursday

Carolyn is doing much better this morning. Thank you for the continued prayers. There is a definite pattern to this treatment. Carolyn and the other ladies being treated all experience pain, soreness, and some sense of despair several hours following the intrathecal injections. The soreness is from all the physical therapy combined with lying down for five hours (which creates a lot of stiffness). It's so impotant to remember that by the next day you feel about 80% -90% better.

As I write this, Carolyn is having a wonderful back massage as her physical therapy, a much needed break. The therapists are always asking for your feedback to make sure you are getting what you need.

After therapy we will have the rest of the day to do some shopping and sightseeing. It will be good for everyone to get out of the hotel for a while.

Tomorrow is Carolyn's last day of treatment and it will be full. Two hours of physical therapy and then her last intrathecal injection and last adipose derived stem cell injection (just like yesterday.) I read today that she will have received about 83 million adult stem cells during this treatment. She can expect to see the best results after being home for six weeks.

Blessings to you all and we looking forward to seeing you soon!

Wednesday Night Prayer Request

It's another very difficult night with soreness and emotional strain. We covet your prayers tonight. Thank you!

Blessings,
Eric

Monday Day 8 - Part II

I'm not kidding... She was able to do a bunch of things (in physical therapy) she could't even think of doing when we got here! I had a hint that something was up this morning when instead of sitting in her wheelchair so I could roll her to the bedroom to get dressed she said, "out of the way!" She then used her walker and took some really confident steps to the room. The thing is that her stamina is noticeably better too. Previously, after a shower she would be exhausted. This walking today was AFTER her shower! I'm so excited to see what she'll be doing by Friday! She's sleeping right now after receiving her third intrathecal injection. This was the best injection yet - no real pain! Thanks again everybody! Keep those prayers coming...

Blessings,
Eric

Monday Day 8 - WOW!

I just had to give a quick update that right now here in physical therapy Carolyn is lifting her legs with small weights attached to her ankles! Something wonderful is happening here. She absolutely has not done this in two years! She is even lifting her "bad" leg! Thank you Lord! The Lord who heals!

Saturday and Sunday - Week 1

What a difference a day (or two) makes!  No doubt all of your prayers have been heard by God!  Carolyn began to feel better on Saturday and by today even more so.  All it takes is for me to see that beautiful smile of hers and my spirits are lifted immediately! 

I´ve got several pictures to post this time so here we go...

Here she is just a few hours ago feeling good and relaxing in bed with a few new cookbooks on cooking "Tico" which is slang for Costa Rican style...

This was yesterday in downtown San Jose.  This was an off the beaten path row of small vendors.  They sold everything from jewelry to hats to keychains to tablecloths to sarapes to shoes.  Did I mention the  painted and framed parrot feathers?  There were little scenic paintings on all different sized feathers - some were quite good!  We would have never found this place if it weren´t for a local who has become a good friend - Ramon the tour guidè/taxi driver.  He works at the front of the Cristina Hotel and we are so happy to have met him.  He is very fond of the local saying "Pura Vida!"  = Pure Life!  It´s a popular greeting here in Costa Rica and I like it.

There are really poor section in San Jose but there seems to be a majority middle class as evidenced by the splendid malls.  This one called the MultiPlaza makes our Brea Mall or even South Coast Plaza look tiny!

We made a trip to the MultiPlaza so Sean could check out the Apple Store.  Unfortunately there were no iPads in Costa Rica yet...    That was enough for Saturday and we headed home.  We made plans with Ramon to take us to the Cafe Brit coffee plantation on Sunday where they give tours of there beautiful gardens and coffee bean processing facilities.

Here we are at the end of the tour finishing up lunch and chatting with Ramon.

Another view of the cafe - It was very beautiful out of doors and under the bamboo covered ceilings...

This is a view right outside the cafe... the rain would pour down for about ten or fifteen minutes at a time and then stop.  Very relaxing!

Here´s one of the exhibits of the various stages of the coffe plants...  With all the information they gave to us I can be a first class coffee snob!  Those bitter Starbucks beans are highly overrated! 

Any way you turned on this tour was a treat to your senses!  We learned that the coffe plant is related to the Gardenia and the plants bloom only two or three days per year.  Can you believe they were in full bloom today?!!  What a delicious treat!

Carolyn couldn´t believe the color of this buganvilia!  This shot is for her....

This is hard to describe... the tour was informative and very entertaining... with a mock wedding and much more!  Here they asked for a volunteer to be the Maid of Honor and our very own "Meema" was chosen to play the part!  It was all quite fun and I was just enjoying the fact that Carolyn was able to sit without pain and smile... 

I´d like to end todays post with an encouraging report.  Carolyn said that her right hand had more feeling in it today than it has in a very long time...  We have heard from others who have responded well to the treatment that one of the first signs of improvement is the numbness leaving their hands and feet.  It´s a small thing - but then again maybe not.  Full of faith and hope we move forward.

Tomorrow is the first day of a hard week of treatment.  Physical therapy every day with three more intrathecal injections on Monday, Wednesday, and Friday - as well as two intraveneous injections on Wednesday and Friday.  The intraveneous injections will deliver the fat-derived stem cells to Carolyn´s blood stream.  Please pray that these stem-cells will set her immune system back to a healthy mode.  In addition, please pray for the strength to endure three of the intrathecal injections in one week especially since we leave at 5 a.m. on Saturday morning for the airport.  We will need God´s strength.

Blessings to you all,

Eric and Carolyn

Day 5

Friday was a day I won't soon forget. I believe you all want to hear a truthful report and I want to help others known what they can actually expect should they pursue this course of treatment.

The intrathecal injections are just very difficult. I am not talking about the actual injection but the aftermath. One dear lady we've come to know, Carla (please pray for her as well) has suffered terrible headaches even though following doctor's orders to lie flat for the five hours. Carolyn hasn't had even a hint of a headache but instead gets a fever about six hours later. When people with M.S. get a fever bad things happen. It's that whole heat sensitivity thing. Fever is one of the short term possible side-effects of these injections. The other thing that happens with Carolyn is that when she doesn't move for a period of time she gets even more stiff (mostly her legs) and her hands and feet go quite numb. This stiffness in turn causes persistent pain. When it's time for her to come to the dinner table or the restroom, it's all I can do to to get her out of bed, into the wheelchair, and then out of the wheelchair. I have to be extra
careful with her since she just had the surgery the day before. Repeat this a couple of times through the night and we are both exhausted and emotionally drained.

Thank God for the morning and and that those difficulties all begin to lift. We both feel a bit of relief as some of her strength returns and she can at least stand under her own power.

I really hope I'm not coming across as whiny or unhappy with our choice to pursue this treatment. We are still extremely thankful for this opportunity and full of faith and hope. It's just that we didn't hear any of these more gritty and realistic details. It's our hope that others might be a little more mentally prepared if they hear some of these things. We realize for us this isn't the end of the story. We are exactly half way through this two-week treatment and definitely look forward to seeing some real positive results!

Sometimes we feel just how limited we are in our own strength. We really do appreciate your prayers!

Blessings,
Eric and Carolyn

Surgery is over!

Carolyn is out of surgery and resting now. All went well and she is not in pain! She'll get the sutures out in 8 - 10 days. She has her second intrathecal injection tomorrow and then rest. Thanks to every one of you for your prayers!

Stem Cell Treatment - Days 2 and 3

Day 2

We´ve learned that the physical therapy here is no joke.  In fact these grueling two hour sessions are the key to seeing results.  I was told by the head of physical therapy that those patients who think the stem cell injections alone are going to cure them are the very ones who do not see much improvement.  You must be willing to work hard.  There are several physical therepists and they cycle through each focusing on a different aspect.  Carolyn has some nicknames for some of them such as The Drill Sargeant :)  They have encouraged me to video tape the exercises so that when we are home we will have the recordings to refer to and won´t have to depend on our memories completely. 

The rain is fairly regular - about and hour per day.  It brings a welcome breeze and coolness with it.  Here´s a picture just outside the CIMA Hospital where all the physical therapy is done. 

After Carolyn´s physical therapy and pre-operative consultation with the plastic surgeon yesterday - we went to a well known local eatery...  It was quaint and had so much character!  We enjoyed a traditional consado meal along with wonderful guanabana liquados!  Of course I followed it up with some terrific Costa Rican cafe con leche... poured through the "coffee sock" right at the table. 

Day 3

Today was very difficult.  The physical therapist pushed Carolyn to her breaking point.  I really think they ought to take the heat into account better than they do.  People with M.S. are extremely heat sensitive.  Add to this that many of the patients are from the U.S. and are not used to this kind of heat and humidity.  Anyway - after placing cold packs on Carolyn and some rest she was feeling much better and was ready to get back to "work".  There is a whole emotional stress component that comes with being in a foreign country, pushing your body much harder than usual, and the anticipation of spinal injections and surgery that really adds up.  I´ll continue to say it, Carolyn is amazing.  No doubt, God´s hand is upon her.  Thank you again and again for your prayers.

After this toughest of physical therapy sessions thus far, Carolyn had her first intrathecal injection.  She was pretty nervous but in the end was surprised that it went so smoothly.  Following each intrathecal injection she must lie down flat for five hours.  Let me tell you, she doesn´t mind at all after a day like this!  She feels good though... muscular soreness - but good.  No hint of a headache!  The reason you lie flat for five hours is to let the spinal pressure regulate after the injection thus preventing headache.  This also lets the stem cells flow up to the brain.

Tomorrow is a very early day.  We will be picked up at 6:15 am and begin checking in for surgery at 9:00 am.  This picture above is one of at least four hospital buildings we´ve been going to - all part of CIMA Hospital.  The hospital is impressive and for the most part - immaculate.  You sense immediately that the medical proffessionals take their jobs extremely seriously.  You really know are beeing well cared for.  The mini-liposuction takes about an hour and then she´ll have the rest of the day to rest.  Friday will be her second intrathecal injection and then five more hours on her back.  That will be all for this week and so hopefully she´ll be feeling well enough to do a little more sight seeing on the weekend.

Thanks again everyone for following along and we miss you all!

Blessings,

Eric

Stem cell treatment - Day one

This morning Carolyn completed her blood work. Doctors withdrew blood for the purpose of separating serum to be used in a couple of days with the stem cells. The doctors were very knowledgeable answering all of our questions and addressing our concerns. They went over the schedule for the rest of the two-week treatment. We made it back to the hotel in time for Pinto Gallo, the traditional Costa Rican breakfast. Carolyn had the opportunity to nap for a few hours before being picked up for her two hour physical therapy session. As you might imagine this session was difficult but very important for determining Carolyn's current abilities as well as limitations. I'm really proud of her... she really gives it her all! Tomorrow will be another two hour physical therapy session followed by a pre-operative consultation with the plastic surgeon who will perform the mini-liposuction on Thursday. We ended the day with a trip to Helados Pops a wonderful Costa-Rican ice cream haven - I highly recommend that mango ice cream... tremendous!

We´ve arrived in Costa Rica!

The two flights were very smooth.  Making  our connection was

a challenge because of the short layover but we managed.  We landed at 6:45 pm and it was almost dark.  We were welcomed by staff from the Stem Cell Institute and helped through customs with no problems.

I´m really happy we planned to get here a full day before the first appointment.  Sitting on the flight for over five hours really makes for stiff legs for Carolyn.  Traveling in general is also very tiring for her.  She is resting a bunch today so she´ll be in as good as shape as possible for tomorrows appointment.  Tomorrow Carolyn will have blood withdrawn for the purpose of gathering the serum to be used in a couple of days.  It´s also our chance to meet with the doctors and ask any questions we may have.

On our drive from the airport to the hotel we met another family who is here for treatment for their daughter who suffers with Autism.  Please pray for Rachael who is eleven years old and very friendly.  She was very sweet and it is her second treatment.  It just so happened that her mother grew up in Fountain Valley, CA just a few blocks from where I grew up in Westminster!

The weather here is as I expected.... hot and humid but not nearly as bad as it will be in a few short months!  I am so happy that our hotel has A/C in both bedrooms!  If there was not Carolyn would be in bad shape.  We haven´t been out much but the trees and plants here are so colorful and wonderful to behold!  The birds also sing in another language... :)  

Thanks again to everyone for your well-wishes and prayers!   

Welcome!

Thank you to everyone who has been caring for Carolyn, Sean, and I in word, deed, and prayer.  We are looking forward to this journey and trust that the Lord is leading us.  For those of you who have not already heard about the upcoming treatment, here are some of the particulars:

We've only recently learned about this treatment and don't consider ourselves experts - but we have done our homework and met some people who have received the treatment with wonderful results.  The hospital is in San Jose, Costa Rica with headquarters in Panama City, Panama.  You can visit their website for plenty of scientific papers/videos etc.  Why Costa Rica?  The treatment is not "yet" FDA approved (although my understanding is that there are phase III clinical trials in the US going on).  The question is whether to wait on the FDA (and get the health insurance coverage) or pursue it now before the disease progresses further.

We are convinced that the doctors at the Stem Cell Institute are top notch.  They offer two treatment programs - a 2 week treatment and a 4 week treatment.  God has provided for the two week option.  The treatment itself utilizes a combination of 1) fat derived stem cells (from your own body - as in "mini-liposuction") which works to 're-set' an over-active immune system and 2) donated cord-blood derived stem cells.  These donated adult stem cells (not embryonic) are given intrathecally (like a spinal tap or an epidural) and are shown to actually repair the myelin sheath - very exciting!  Each person we talk to or read about who has received treatment at the Stem Cell Institute has raved about the exceptional treatment, professionalism, caring manner, and cleanliness of the hospital.  There have even been a couple of people who did not benefit dramatically and yet wholeheartedly recommend the doctors and the treatment at the Stem Cell Institute.

We leave this Saturday, April 17th with the treatment to commence on Monday the 19th.  Carolyn is due to receive her first injection on Wednesday the 21st followed by the mini-liposuction on Thursday the 22nd.

Our journey just to get this point has been amazing.  So many prayers have been answered regarding funding, passports, birth certificates, vacation time, and work considerations.  We are feeling overwhelmed in spurts and then peace.

At this point we covet your prayers for the preparation, packing, and those things I'm probably forgetting!  Pray for safe and smooth traveling and that we would be always reflecting the light of our savior.

- Eric