Return to Real Life

Steve and I both returned to a firestorm of activity on our jobs, in addition to taxi-ing around a highly-committed Julianne, with her car in the shop. Life is full! It appears that Juli's car is now fixed, which will make life much simpler.

Many people have asked how Steve is feeling, so we want to keep you updated. Our plans are to continue to post to the blogs, for the benefit of those you who have followed our situation closely. We just don't have the amount of free time that we did in Costa Rica, so postings will likely be less frequent. Steve, at this point, is still pretty much the same. He has a LOT of work to do. We have been told by the Institute of Cellular Medicine that we should expect eight to 12 weeks before seeing any improvement, so it is early yet. In addition to the nerve and spinal cord repair that needs to take place, Steve's muscles have atrophied and he must diligently work to rehabilitate and rebuild them. This is going to take a great deal of time and patience.

Marie, I was able to get out of jury duty! Thanks for the encouragement, as we don't need that on our plates right now. Basically I resorted to begging and the judge excused me. In addition to our already full lives, I am still dealing with the residual effects of the accident I witnessed. Tuesday, the insurance company, for the elderly couple who was killed, called me for a witness account. We went back to the scene of the accident and I recounted everything, again. At that point, I realized that the point-of-impact was only about four feet in front of my car. Too close for comfort! That same day, I learned that the district attorney has asked the grand jury to consider vehicular manslaughter charges against the 20-year-old driver. My feelings are very mixed about this. Life is not black and white; there is a great deal of gray area and I lost a lot of sleep that night.

Home Sweet Home

Around midnight last night (Saturday) we made it home, safely. What a huge relief! We had a commitment this morning at the church, as our Julianne led the entire Vacation Bible School celebration during the service. The sanctuary was packed and she really did a great job! It was a terrific homecoming event for us.

We are very proud of the girls. They did an amazing job of getting along and working together while we were gone. Alyssa (19) held down the fort and took care of her youngest sister. Julianne (16) went to volleyball practice every morning, worked every afternoon, and performed at VBS every night. Michelle (12) mainly took care of our pets: Nina, Gizmo and Talouse. The house was in good order, too! They stepped up to the plate for the benefit of their dad. For this, we are extremely grateful.

One little bump in the road did occur, however. Julianne's car was in the shop, almost the entire time we were gone, so she was driving my car. While Juli's car is getting more than $1500 worth of work done on it, she proceeds to back into Alyssa's car, located in the driveway, with MY car. So now, we have three vehicles in need of repair. In Julianne's defense, you cannot see anything in the driveway, when backing out of the garage, due to the slope. In Alyssa's defense, she did not realize that visibility was so limited, since she has never parked in the garage. Oh well, thank goodness damage was minimal and no one was hurt.

Stemmies - Our New Friends

Hallelujah! We are finished with the stem cell treatments and ready to get home. Steve received his last treatments today and has just gotten up from his five hours in bed. Most people who come here for treatment have a four-week regimen. When you come for only two weeks, they ramp up the treatments, making it very intense. Between lipo-suction, physical therapy, intrathecal spinal cord injections, and intraveneous infusions, he has been constantly poked, prodded, and pushed beyond his limits. Not to diminish what he has been through, but it has not been easy for me to watch this, either. We are glad this part is over and now the real work begins; rigorous physical therapy.

The best thing about this trip has been the new friends that we have made. Surprisingly, there are many long-married couples here, dealing with the same issues. I thought we were the only ones whose marriage had survived this! One gentleman referred to the group as "Stemmies," a name that will surely stick. We sit outside by the pool every night talking, laughing, telling jokes, and relating our stories to each other. They are an awesome group of people, whose friendships I will treasure forever.

Steve and I are ready to have our lives back. This disease was something that we minimized and chose to push aside, much of the last 23 years, because there was no way to make it better. Our survival mechanism was a type of denial. Most of my co-workers were unaware of the fact that Steve had MS, until we learned of this treatment last fall. That was when we started making people aware of the treatments and the possibility for a cure. Since that time, MS has been a huge focus in our lives, which has been exhilirating and depressing at the same time. It brought all those feelings to the surface and forced us to deal with the reality of this insidious disease. But we also had hope! With that said, we are looking to the future, focusing on our family's personal improvement, growing my real estate business, and enjoying these last few years with the girls at home. Life is good!

PS. Now if I could just get out of Jury Duty next week! Yes, my request for excusal was denied and I start the 3-month commitment next Thursday, with Orientation. I don't mind doing my civic duty, but now is not the best time!! Does anyone have any advice?

Adipose "Fat" Injections

Steve received his first intravenous stem cell injection yesterday, from his own fat stem cells. It was a little scary because he developed a fever, which is normal, but that always knocks him down a notch or two. He was really struggling, just as we are finishing treatment and hoping for the best. Not the outcome we wanted!! However, a couple Advil got him back on-track and he is feeling fine now. He will have another "intravenous" injection tomorrow, as well as his last "intrathecal" injection into his spine, with the cord blood cells.

The prognosis is that it will take two to six months for him to see any improvement. First of all, his muscles are atrophied and will require extensive rehabilitation. Even if his nerves and spinal cord were miraculously healed right away, it would still take time and much work to get back to "normal". At the very least, we hope the fatigue-factor is diminished. This is something most of the previous patients, who have received this treatment, say goes away. That would be amazing, with teenagers depending on us! Time will tell...

Costa Rica means "Rich Coast"

On our trip to the Rainforest Tram we saw some of the most beautiful scenery. It was a two-hour drive through the mountains, to the coast. Costa Rica is rich with fruits, vegetables, trees, and flowers. This photo shows a mountain-side covered with coffee plants. How do they harvest these beans? One at a time, by hand, with huge baskets on their shoulders, on the side of a mountain. Coffee is a huge industry here in Costa Rica. It is very bold and delicious, if you like coffee!

Costa Ricans are hard-working people and very friendly to Americans. They appreciate the fact that we are huge supporters of their economy and they provide excellent service. Another notable thing is that people here are not over-weight. Their diets consist of a dish called El Cosado which literally translated means "marriage." It consists of rice, beans, salad, quartered tomatoes, and a meat or carne. The idea behind Cosada relates to the fact that once you are married, your wife makes a complete meal for you, as opposed to the simple one-dish menu one has while a bachelor. (Please don't tell Steve I am supposed to be cooking all this stuff !)

Attached are some photos of the rainforest, which was spectacular. We saw iguanas, snakes, frogs, macaws, and plenty of interesting plants and trees. There are other interesting and educational things to visit here, such as volcanoes, coffee factories, sea turtle hatchlings, monkeys, and more. Unfortunately, we just don't have time, since weekends are the only days off from the stem cell treatments. We need to come back on vacation and bring the family!

This frog was in a serpetarium at the rainforest park and Ithought he was made of ceramic,until I saw him breathing. Those are iguanas in the tree , in the photo on the left (below).

Back to Reality

Today, Steve had to go back to ICM and have more blood drawn. Then we went to CIMA Hospital for a rigorous physical therapy session, as well as his third intrathecal injection. The increase in endorphins, as a result of therapy, helps with the cell re-generation, which makes sense. When we got back to the apartotel, Steve laid down for five hours, while I walked up to Burger King. It was just time for some good ole' American junk food!

Tomorrow he only has physical therapy at 9am. Afterward, I hope to do a little bit of sight-seeing and shopping.

Interesting fact: the stem cells from one umbilical cord can treat 5000 people. So, the argument that people will have babies just for stem cell purposes is a myth. There really is no need for that.

Costa Rica is Gorgeous!

Today, we went to the Aerial Tram in the Rainforest. It was absolutely gorgeous! The most suprising thing to me, about Costa Rica, is the mountainous terrain. There is very little flat land here and the mountains are covered with lush vegetation and huge trees. The tramway climbs a huge mountain with amazing vegetation, waterfalls, and wildlife. We managed to see iguanas, macaws, huge termite mounds, and other unique smaller bugs. There is also a walking path there, with cocoa bean trees, cinnamon trees, allspice plants. Lastly, they had a Serpetarium with a huge copper-colored frog and several species of snakes, indigenous to the area, including rattle snakes, pit vipers, and others.

The fruits and vegetables here are abundant, and most of them are new to me. I tried a "jocate" today, which is considered to be a delicacy here, but it was a really weird texture! When Steve saw the look on my face, he opted out. No sense of adventure!

Mark Lozano-Ross and his parents were with us today. Mark is about Steve's age, also has MS and finds it very difficult and tiring to get around. His parents have come to support him until his wife gets here on the 28th. We were glad to have the company!

Pics will follow, at some point. Right now, I am missing the nightly fellowship around the pool, with Costa Rican coffee. Everyone gathers there in the cool evenings and we have become a real family. When we leave, I'll miss the folks AND the coffee!

Lazy Day

Since there are no treatments on the weekends, our schedule is free today and tomorrow. However, Steve is still recovering from the lipo-suction and was not up to going anywhere today. He is black and blue in the five (5) places they poked him. My plans to rest have panned out very well. However, I am starting to climb the walls. With Steve barely able to get around, and me uncomfortable with taking a taxi or walking alone, the four walls are closing in.

We are hoping to do some sight-seeing tomorrow. The Rainforest Tram and a visit to a volcano are on the schedule. They are several hours away. Since this is our only weekend here, and therefore our only opportunity to do something like this, I hope we are able to go!

Other Treatments

I miss my beautiful daughters. Some of the blessings we have received while here have included meeting two families with beautiful young children, Charlie (3) and Mackenzie (4), who both have Cerebral Palsy. Both of these adorable kids were "normal" when born, but had experiences around 18-months, creating serious brain injuries. Charlie was a near-drowning, with his parents standing right there (he was actually pronounced dead for 20 minutes) and Mackenzie choked on a goldfish cracker, without air for five minutes. How many goldfish crackers did my toddlers eat? Many, many, many, many.

The treatment for these little ones only takes one week. They will both be going home tomorrow and I am very hopeful that these children will benefit from the life-giving cells they have received here. Charlie and Mackenzie are unable to talk, but they both have really big eyes and beautiful smiles. We will miss them. and wish them the very best!

Please check Steve's blog for updates on his treatment: www.skreynolds57.blogspot.com

Why Am I Here Instead of the Mayo Clinic?

Why isn't this procedure available in America? Doesn't the US have the best heath care in the world? I have always thought we did, although I question now why I am in a hospital, trying to communicate in another language, for this procedure to heal my husband/family. (Thank goodness I live in Las Cruces and recognize many phrases. However, Steve and I have noted that Costa Rican Spanish is as different from New Mexican Spanish, as a Brit's English varies from that of someone from Alabama. In Las Cruces, a tostada is a corn chip. When I ordered a tostada this morning, I got toast and butter. Oh well, I digress...)

Back to the medical care. So adult stem cell research is legal in the US, but has it been approved by the FDA? I don't even know. However, there is no procedure like this one available within the US. We are aware of one clinic that treats with stem cells, but only for very certain types of MS. Steve did not qualify for that treatment, and even if he did, there were 1000 people on the waiting list, the last I heard. After many discussions with the other highly intelligent people here receiving treatment, the conclusion as to why we had to travel outside our great nation, boils down to a few possibilities.

First of all, the FDA is VERY slow to approve new things. Is this because government is too big and approvals take that long to make it through the process? Is it due to frivolous law suits, when people take medications and something goes wrong, so they sue doctors and/or drug companies? Maybe it has to do with the fact that pharmaceutical companies make billions of dollars selling medications for illnesses that have no cure. They fund most of the research for drug approval. But, is it really a drug when they take your own cells and inject them back into your body? Hmmm....

Lipo-Suction Sucks

Right now, I am in the hospital waiting room, for going-on five hours, waiting for Steve to recover from the lipo-suction procedure. They fully anesthetized him, which makes sense, but I was unprepared for that part of it. The other MS patients staying here, who have already been through the lipo, say it is the worst part of the treatment. Many of them have a very difficult time with it, since most are really thin and have very little body fat. Usually, they end up poking around several different areas, including the inside thigh. That has to be really painful!

The doctor just came in and told me he made it through okay. It was a huge relief and I started crying, not realizing how worried I had been. The accident from last week is still very much on my mind. Life is fragile and precious.

Steve Update: Yeah it was no fun but other than some soreness and having to wear a girdle, not too bad. I do allright being knocked out.

Stem Cells Rock!

The hospital was freezing!!! Someone told me they keep it 40 degrees in that area, and I believe it. They brought in a cooler and I asked if it was beer:) They showed us the syringe with Steve's name on it and asked us to verify that it was him. The syringe was about 3/4-inch in diameter and had about one-inch worth of yellow liquid in it. These were the umbilical cord stem cells mixed with Steve's own blood serum (remember the 9 vials from Monday...) After sterilizing and deadening his lower back, they inserted a small needle and then a LONG needle inside that one, to keep from contaminating the site with skin bacteria. The syringe was attached to the long needle and the liquid slowly injected. That was it, his first intrathecal stem cell injection. He came back to the apartotel and lay down for 5 hours, flat on his back, no pillow.

Tomorrow is the lipo-suction procedure. We should expect to be at the hospital for about five (5) hours. I went out and bought a jacket today:)

Obama, Bush & Stem Cells - The Truth

There is a great deal of mis-information out there, concerning the Obama administration, the Bush administration, and the "ban on stem cell research". There was never a ban on federal funding, for any type of stem cell research, except for those studies involving embryonic stem cells. The only ban that existed, and has thus been lifted by Obama, was for the funding of research on embryonic cells. This is the only difference between the two administrations where stem cells are concerned. It is my understanding that now these funds, for which the ban has been lifted, must be used for embryonic research ONLY, although I have not researched this particular fact thoroughly.

There is new information, according to the Institute of Cellular Medicine here in Costa Rica, that embryonic stem cells are more likely to cause cancer. Their nature is to keep reproducing, as they do during the formation of a human being, and therefore they don't know when to stop. This results in the formation of tumors, when used for healing purposes.

On the other hand, adult stem cells, for which research has always been legal within the United States, is different. Since adult stem cells are for healing the body, not the creation of it, they stop working once they do their job. Again, they are found in the bone marrow. When there is trauma to the body, the injured area sends a chemical message to the stem cells. They travel to, and heal, the affected area. Adult stem cell therapy is the injection of massive amounts of these cells, for areas that have been traumatized beyond the body's natural ability to repair itself. WOW!!!

Amazing Stuff

Today was Steve's consultation. All I can say is, WOW! Here is what I learned about stem cells and how they work. When the body is injured in any way, the traumatized area sends out a chemical message to the stem cells in the bone marrow, for repair. These stem cells subsequently travel to the affected area and sense what type of tissue it is, then begin the work of healing. As we age, these stem cells become less potent and/or sometimes the damage is just too great. However, the stem cells in umbilical cord blood are brand new and therefore, very active. It is natural for them to detect what type of tissue to turn into and where to go within the body, as that is how the body is originally formed. Therefore, these cells naturally know what type of tissue to form. These will be injected "intrathecally" into Steve's spinal column, where the MS has damaged the myelin sheath coating, which allows the nerves to conduct properly. By massively infusing them into the spine, and lying on his back for five hours afterward, these cells will travel to the spinal column and repair the damage that has been done.

More later on the stem cells derived from his own fat and how they will work. For Steve's Blog, go to www.skreynolds57.blogspot.com

Off for Bloodwork

Breakfast this morning, by the pool, consisted of rice and beans, cold cuts and cheese, eggs and ham, toast, Count Chocula, and Fruit Loops, as well as fried plantains with cheese (those were good)! The rice and beans is a typical Costa Rican breakfast, but not my style. There are also freshly-squeezed fruit juices, I am not sure what kind of fruit, but they are really good.

The hospital van will pick us up in about 45 minutes and take us to ICM for bloodwork. Evidently they take about nine (9) vials, so we are ready to get this part behind us. This afternoon, Steve will have a pre-operative consultation at the hospital, as well as his first physical therapy session. More later.

We Made It to Costa Rica!

We arrived in San Jose yesterday afternoon. It is a naturally beautiful city, lush and green, with a third-world look to it (crowded and dirty). After getting into our "apartotel" and sleeping for a while, we had an excellent dinner at the hotel. Afterward, we went to the pool where others, who are here for stem cell therapy, hang out in the evenings.

First, we met an adorable young couple from Flagstaff, AZ, Mark and Celeste, who are here for Mark's spinal cord injury. He was in an accident six years ago, three weeks after they got married. He was paralyzed from the chest down and has been in a wheelchair since then. They have been here for two weeks and both have amazing spirits.

Robert and Julie are another couple here, from Gainesville, TX. They have been married a long time and Julie has MS. Their story is very similar to ours. Julie has been fighting MS since the early 90's. They have three daughters, 21, 18, 17. Robert told a funny story last night about a stranger staring at Julie in a store and she told them, "All I can say is, don't lie about your weight when you go bungee jumping." In another similar incident she told someone, "Check your parachute when you go skydiving." Love that sense of humor!

On a more serious note, most of you in Las Cruces are aware that I witnessed a very traumatic event on Thursday afternoon. Directly in front of my car, only a few feet away, an elderly couple was killed instantly by a speeding truck. I was also in fear for my own life, since their car was knocked airborne and landed very close to me. This has greatly heightened our emotions and desire to get the most out of life and these treatments for Steve. We know, more than ever, that we are supposed to be here. We are looking forward to new friendships with people who have also experienced this insidious and isolating disease. Now, our plans are to kick MS's butt!!