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