Panama: August 8, 2012

An update from Chris about his treatment and his time with Jenn and the kids in Panama. Come home soon. We miss you...

Jenn and the kids and I went to the Caribbean with some friends.  It took us over an hour to get there. We had to travel through poverty stricken villages to get there. I just wanted to stop and help everywhere and everyone along the way.  To just be able to clean up and help with repairs or paint or anything! I kept saying if only I had my legs I would help them.  I kept saying that I wanted to be President so I could clean this shit up! That if I was wealthy, I would change all of this.

 We leave no one behind in our country. People who disagree with giving assistance to the poor and the less fortunate need to stroll through the villages here and see for themselves how our country could be.  We wouldn't want to travel anywhere in our country. God, there is so much garbage all through the villages and all over the roads.  The kids are just roaming barefoot and wearing nothing but underwear.  Stray Dogs rummaging for food and skinnier than hell.  My kids have seen and experienced so much.  We just buy from every roaming vendor, fruit and food stuff.  Then we give it away.

 This was the first time I was at the beach since my accident. I rode pretty well in the sand. I even popped a wheelie and muscled my way to the water’s edge. My kids were in Heaven.  They were so happy running in and out of the water. I wanted so much to be lying in the waves with them.  I stared at their little feet in the sand.  When the waves pulled the water back out I watched their feet sink and all the sand and broken seashells move through their toes. I watched them run out into the water and crash into the waves. Reminded me how excited I was at that age seeing the ocean for the first time.  That memory is stamped in my mind forever.  Anyone who has ever been to the beach knows that exact feeling. I wanted to just stand there and feel that feeling with my own toes in the sand.  I was just so focused on that feeling the whole time. I remember that annoying feeling of sand stuck to your legs after you sit in the sand. The things in life we take for granted.  Next year I promised them a trip to the ocean—an honest to goodness summer beach vacation. We always went every year but my stem cell treatments have taking all of our time and energy.  My wife and kids are struggling and are a little home sick at times. We have spent 2 months down here since my accident.  I struggle at times.  But I know this is my only chance on earth, my only shot.

Here is an update from Chris about his stem cell treatment and therapy in Panama. Keep going bro, keep going...

I just received my first umbilical cord injections, intrathecal and IV. My legs tingled and burned all night. I have tingling in between my toes as well.  Therapy is like boot camp. I am at a new place called Bioimagen. My therapist’s name is Josalyn, Jose for short, and she don’t play no games!  And when you do a set of 25 reps you get about 30 seconds to catch your breath until the next exercise. I can count and sometimes her 25 is 35.  I am so sore, sore as hell.  My back has been aching where my rods are located.  She can squeeze more abdominal workouts in one hour than any one on earth.  I feel like I'm back in high school waiting for the bell to ring to dismiss class. But it's good.  A lot of my motivation comes from being frustrated and mad.  I have learned how to tap into those feelings and turn them into good energy.  My first day at therapy, in the midst of 300 sit-ups, I wondered how the hell my life ended up this way.  You get these moments when you think that all this can't be real. Like stop this train I want to get off type feeling.  Crazy. But it is what it is so you got to move if you want to live.  I have some moments like that then I snap out of it and go. They got weights strapped to my arms while I'm balance sitting-- throwing pillows at me to catch and throw back to a few therapists standing around me.  My balance is great.  My second day of therapy was hard after getting those injections.  My body just could not get moving. I was so exhausted from the stem cells.  I talked to the doctor and she said that it's normal and not to worry, something with the umbilical cord cells and my immune system.  I was just more tired than I ever felt in my life.  I just wanted to close my eyes and sleep on the mat. My drill Sergeant Jose, (who doesn't speak much English at all) said, "You lazy today." I popped up like a bat out of hell and said “let’s do this.”  Then I had to change the mood for the rest of therapy.  The mood in there was like being at a funeral.  I started practicing my bad words in Spanish while we exercised and before long, I had the whole room cracking up.  Now they all think I'm crazy.  Now I keep them laughing with just the silly things I do. 

 My injections were yesterday.  I don't know what to expect but here's how I feel right now.  My hip flexors are really active. I had those since the last treatment but they are just really active but it's not a fine controlled motorized movement.  They trigger and my hips thrust and sometimes when I'm laying flat my leg will just come up and bend at the knee.  My left is more active than my right.  My butt and legs just tingle.  They don't hurt.  You can't feel them but you just know they are there.  It’s really hard to explain. The tingling helps me mentally visualize where I am paralyzed and locate it in my head.  My shins tingle.  It tingles above my knees too.  It's a constant tingle, kind of like your ass feels after you get done push mowing for a long period of time!  I got IV umbilical cord on Friday and therapy and then I'm off until Monday.  I received good news about my bone marrow extraction!  The doctor said he went three times because my counts were always low in the past. They don't have the exact count yet, but said I have enough marrow for the next time and possibly a third if I have progress!  That is great news considering my counts have been just enough for that particular time.  I was excited to think about the next trip and possibly the one after so I wouldn't have to repeat that procedure. 

Today's therapy was crazy. The construction workers the night before broke the elevator which we use to get to the second floor of the therapy gym.  They decided to build ramps that night to get all the patients to therapy.  All I got to say is that if Frank Ross was here he'd be fighting some Panamanians! Steeper than you can imagine! Three separate staircases. 5 men to get me up the ramps. I'm probably the heaviest patient here right now at 200 lbs.  I appreciate the effort but I told them if the elevators broke next time don't come pick me up.  I got some video on my phone. I made this man I met who’s here with his wife film it.  I had a smudge on my iPhone lens so it's blurry. I'm mad about that! It was a You Tube special!  

I got a second intrathecal umbilical injection today at 4. I spent an hour afterwards doing stand- up comedy at the clinic.  I kept everyone entertained.  We had dinner in tonight. I am going to try and get some sleep. We are going to take the kids to the Caribbean tomorrow.  A friend in Panama offered to drive us and spend the day with us. One week down and an important week lay ahead. My spasticity has quieted down and I am now just waiting on something new with my body.

Below is the letter that Chris penned to President Obama. Chris attended the rally at CMU in Pittsburgh on July 6th and was inspired to share his story and his journey.  Chris will embark on his fourth trip to Panama for stem cell therapy and intense physical therapy.


Mr. President,

My name is Chris Niles. I have been married for over ten years to my wife Jennifer and have two wonderful boys Christopher 12 and Braden 9.  We live in western Pennsylvania in the small town of New Castle about 54 miles north of Pittsburgh. 



I have never paid much attention to politics until the 2008 Presidential election.  I began to follow you online and on TV throughout your 2008 run for the White House.  I find you to be a very inspirational and motivational President and speaker.  You are an amazing father and a terrific role model.  You have accomplished so much this term and I feel a lot of these accomplishments go unnoticed.   When I hear people say, "Obama has not done anything," I kind of just laugh and realize that they truly do not know this President’s long list of accomplishments and probably get their information  from the opposition.  The opposition is a party who constantly and continuously wastes time with silly partisan politics like trying to prove your presidency illegitimate. They waste time on silly cockamamie theories such as the ‘birther issue’. An opposition whose only goal is obstruction, with an unwillingness to cooperate even while knowing this adversely affects the American people.  I truly believe  history will tell a different story of you Mr. President, contrary to what your critics believe, and I believe the best is yet to come in your next term!   I supported you then and continue to support you in the 2012 election.  On July 6, I traveled to the Carnegie Mellon  campus in Pittsburgh to hear you speak.  Listening to you in person and experiencing the whole event encouraged me to send you this letter.



One of your accomplishments that did not immediately impact me directly occurred in March of 2009 when you signed the law lifting the ban on federal funding for embryonic stem cell research.  This law became a good life lesson for me that not every bill passed or law written is going to make every voter happy, or is good politics or even has or will have an impact on us as an individual directly. Often actions of our government go unnoticed until they effect us individually.



Here is my story.  On  March 3, 2011 I dropped my boys off at Laurel elementary school here in New Castle, PA.  That day happened to be my day off and I decided to get some work done around the house.  I worked for 11 1/2 years as Cook supervisor at the Lawrence County correctional facility. I stopped by a cousin’s house briefly before going home to do some finishing work  in the basement of my home.  We had just built our dream home in 2010.   I took some construction debris from the basement out to a burn pile in my backyard.   To get the fire going I then grabbed my chainsaw and began to cut some dead trees in the end wood line of the yard. Little did I know, in a few moments my life was going to change forever.  I cut up a few trees and had the fire going, but there was one broken storm damaged tree that I had been putting off disposing of since we built the house.  My wife and I repeatedly talked about taking down that tree for fear that the boys would get hurt playing or climbing around this tree. That tree was just an accident waiting to happen, literally.  I decided today was the day I would finally remove this dangerous tree.  I started to cut the tree and quickly noticed everything started crashing and collapsing around me. I dropped the saw and got away from the top half of the tree as it began to fall. I just turned around and ran.  As I ran, the 20-foot trunk followed the path I ran and hit me in the back, breaking my back and cutting 50 percent of my spinal cord.  Here I am at 11 o'clock in the morning, alone and pinned under that tree, paralyzed from my mid chest down from the blow to my back.  We live in a rural area so the neighbors are not real close.  We also have a long driveway and our house is about 500ft from the road.  I yelled  for help for hours as much as I could before blacking out several times. I was in and out of consiousness all day. Several times I started to panic but quickly gathered my wits and knew I had to just stay alive until my wife got home from work.  I remember talking to my kids as if they were there, telling them I love them both so much and how they mean everything in the world to me.  How I would love to see their faces one more time!  I lay trapped paralyzed on my side with my cheek in the dirt.  Not knowing if I was going to make it through the day, I grabbed a nearby twig and was writing  a message to my boys in the dirt.  I was trying to write "I'll always be with you, and I love you." My boys kept me alive that day.  I kept seeing their faces over and over again in my mind. Luckily we all had a 3 o'clock dentist appointment that we obviously missed, and because we did not make the appointment the dentist's office called my wife.  Knowing that it was out of character for me to miss an appointment my wife sent people out looking for me because nobody had heard from me all day. I was found shortly after 3:00pm and was lifeflighted to UPMC Pittsburgh Presbyterian Hospital where I had emergency reconstructive surgery on my back. The finality of this event had left me with this diagnosis; I am a T-6 ASIA A Complete.  My doctors told me I will never walk again.  That night in that dark room with my family around me I was told that several times that I would never again walk.   I kind of smirked inside and in my mind just thought I'm happy to be alive and I'll deal with it.  Endless amounts of rehabilitation followed and continue today.  I have been battling back every day to regain any ability I lost.



I am preparing right now for my fourth trip to Panama City, Panama for adult and umbilical cord stem cell treatments at The Stem Cell Institute.   I have been receiving these treatments throughout the past 16 months and they have been helping me significantly.  Adult and Umbilical stem cell treatments have been helping spur some movement in my lower body and have helped with some muscle regeneration. Although these treatments have been therapeutic and somewhat beneficial, I fear they are not the sole answer to curing paralysis and repairing the spinal cord.  I believe the answer is in embryonic stem cell lines. 



Never before have I understood the notion that the future of America will come from investments in education, science, and research.  Contrary to what the opposition believes, even in the face of deficits, we must NEVER stop investing in fields such as medicine, science, and education in general.  This is not just for my sake, but for the millions in this country suffering with all sorts of diseases and conditions that we have the capability to cure through continued research.  Will a reelected Obama administration continue funding for this research? Will a Romney administration end the funding and attempt to overturn this research just as they vow to overturn and end almost everything else passed by your administration?  I believe these past three and a half years have just scratched the surface of what your administration can achieve.  I supported the healthcare reform and I think it’s just the beginning of improvements that can be achieved in the field of medicine and healthcare.  I encourage you to continue to (as your campaign slogan says) move FORWARD.  I also ask that you continue to push for more research in stem cell treatments because I feel they have such great potential to help people who have illnesses and conditions such as mine.



Sincerely,



Chris Niles

The Road to Panama: Part III

Panama: Round 3

What a long day but we made it. This place is like a second home to us. There is just something so special and magical about being here.  It's amazing the people that we have met along the way on this journey;  the TSA woman in Pittsburgh that wrote my name down on a piece of scratch paper because she wants to pray for me, another man from Texas I met who was heading to see his parents because his Dad was sick.  I told him my story while we were waiting for our flight. We had such a good conversation about stem cells and all the controversy in the US.  He gave me his brother’s number in Panama in case of an emergency. He said he will take care of us if we need anything.  The, as I was being escorted off the plane by two Panamanian guys that didn't speak a lick of English, the pilots and stewards clapped and cheered and chanted good luck as we got off the plane in Panama.

  Sunday was a Great day with my kids. We sat by the pool most of the day.  I felt really well so I attempted my first successful pool transfer. Grabbed the ladder held my chair and went right down with ease. What did I do before You Tube? You can learn a lot from it!!!  I put my feet in the water. While the kids played in front of me. They both begged me to get into the water. I just told them one step at a time. I promised them by the end of the week I'll swim with them. That's a huge accomplishment for me getting to that poolside.  My first time in Panama I was so sick and I couldn't of dreamed of getting in and out that chair. I spent all day and evening in that wheelchair.  It was especially hard at night with the rough transfers from my chair to the bed. I had so much pain and had no strength plus I was really just beginning to learn my body. It always bothered me to watch my kids swim. When I could walk I would take them both one in each arm and just pull them all around the pool. I was their personal raft for so many years.  I was always their jungle gym.  I have so many pictures of us swimming together. I felt so free just sitting their splashing the boys.  I didn't even care about the chair or my paralysis. I was just the old me for a brief time.   The boys watched a clip in a movie where a man in a wheelchair wheeled right up to the pool and jumped in right off his chair into the water.  The boys egged me on saying “we know you can do that Dad, just do it!!! “ I laughed and told them that I know i could but I didn’t need any more injuries right now!!! Christopher is turning into a little man.  He has my heart.  There has never been a situation that I have gotten into in my life that I didn't find a way out.  Christopher is developing that trait. He begs me to get in that pool. He tells me, "Dad, trust me, I'll  lift you out."  What a great day it was. I felt good physically.  Then I grabbed the pool ladder and my chair.  First heave and bam right in my seat.  My kids were so excited. I was too. We talked about it the whole way back to the apartment like it was the greatest thing that ever happened. They kept repeating it and repeating it over and over.  I guess we all love to repeat things when something good happens.

We had dinner later that night with Jim Bregman.  He's the owner of the apartment we rent.  I really enjoyed our conversation.  He studied Judo for 60 years and was the first American Medalist to compete in Judo at the 1964 Olympics in Tokyo, Japan.  We had a great time with him and his girlfriend.  They are the kindest, most good hearted people.  He offered his place to me for my fourth treatment if needed.

Monday we drew all the blood for the stem cells without a hitch. I was so excited to see everybody at the clinic.  They are my family away from home.  Tuesday was the bone marrow extraction. I had to be at Punto Pacifica hospital at 7:30.  Ever since I had my gallbladder out some days I get terrible pain in my stomach. Of course it had to be in full force while I'm getting prepped for the procedure.  It just hurt so badly after I got my IV. I laid there waiting for my turn. I got sick like I wanted to throw up.  The nurses who didn't know much English ran over to me. I kept saying "me siento mal!"  I was pretty sure that meant I feel sick. I almost passed out. Lol. She kept waving an alcohol pad under my nose while I leaned over the bed aiming to hit the big red container.  It passed after a few minutes.  They gave me some medicine for nausea and I was ready to roll. The whole procedure from start to finish took about 3 hours.  When I came out from the extraction I kept waking up and falling back asleep. I did it like 3 or 4 times.  The last time they had this heater blowing hot air under my blankets. God it felt so good! I woke up the last time and I wanted to put my clothes on and leave but I was really comfortable.  I laid there and thought about how many surgeries I had all year.  I've been put under more this year than most people do their whole life!  We spent the evening with Mellissa from the Stem Cell Clinic. We talked about my progress over dinner.  She has seen hundreds of people with disabilities walk through their doors.   She loves her job with a passion.   We all are overly excited about the possible outcomes of this treatment. Hopefully this part of my story is going to get really exciting. I have had thirteen months of therapy and healing.  I fight everyday to move and feel every inch of my body that doesn't work.  The human body is mind boggling and every case is different.  Tomorrow I will receive my first IV and Intrathecal injections.  Tomorrow hope springs eternal.

Update: February 15, 2012

It's been so long since I wrote anything.  When I got home from Panama it was the beginning of December.  I continued to do my therapy.  The muscle movement in my lower back is still there.  To be honest in December I just went through the motions and really had no drive to workout.  Just  the thought of Christmas coming was just a little depressing.  And being in a wheelchair felt like there was just a black cloud over my head this year.  Winter  months have always been tough for me even when I was walking.  I would have to exercise  to shake the winter blues in the past.  And when you're in a wheelchair you can't get the exercise like  you can when you walk.  With the death of my father-in-law in the end of December didn't make things any easier for my  wife and kids.  My kids have  been through so much tragedy within the past year.  We hold it all together and keep moving on. 

 I continue to use the Autoambulator at rehab.  I got picked for a clinical trial for the re-walk program.  I was so excited for this.  My first session I observed another guy using the re-walk suit.  My next session I actually got fitted into the device and practiced standing and sitting.   I didn't get to take any steps that day.  It felt so good to be standing up.  There's a balance point when you're in that suit I was starting to find it and get more comfortable. I had an hour session of just standing sitting and balancing.  I was so confident that I was Going to be able to learn to walk in this robotic suit.  When  therapy was over I got out of the suit in my chair and started heading home.  When I was going to my car I had the worst abdominal pain and it  kept getting worse.  I got into my car broke my chair down, kicked my seat back and just tried to catch my breath because the pain was so bad.  I started the car and took off down the road.  I knew I had an hour drive but I just wanted to get home.  I made it about a mile away from rehab center. I slammed on the  brakes, did a u-turn and drove Like a NASCAR driver to the front doors of Harmerville. I kick my seatback again and laid on the horn waiting for help. A  woman come walking out of the front doors waving to me as I beeped the horn.  It was kind of funny in a way  because she thought I was just saying hi! She come over to my window and I told her to call ambulance.  The pain was so unbearable.  The pain spread  down my legs and even though i am paralyzed I felt tingling the whole way down to my toes.  Then it went up my chest I thought I was having a heart attack.  It was hands-down the worst pain I've ever felt my life.  I broke my back and layed pinned under tree for five hours and was not in this much pain.  I thought I was dying.  Actually got to the point where I accepted if I was dying thats fine, let's just get it over with don't leave me lingering here in pain! An ambulance came and rushed me to St. Margaret's  hospital in Pittsburgh. 

 After a bunch of testing they come to the conclusion that I had a gallbladder attack. I was admitted that night.  The Ultrasound showed that I had all kind of stones in my gallbladder it was inflamed and need to be removed.  Took about six hours in the ER until they finally got me to my room.  I couldn't believe that was back in the hospital.  I went about 36 hours without eating. Till I finally went in for surgery at 5 o'clock the next day!  When I went to go in for surgery I told the surgeon if there's anything else that needs done with my body do it while you're in their  cause I really don't want to come back to the hospital for a while.  He chuckled a little bit and said,"you want me to remove your appendix too?". I laughed and told him I was joking.  He said he would check it when he was in there and if there was a problem he would remove the appendix.  When I came out of surgery the doctors told me I had more than a dozen stones in my gallbladder and my appendix had to be removed to because I was prone for appendicitis.  He said it would've been a matter of time till I would've had to come back for my appendix so they just removed it.  I was released the following day about 1 o'clock.   I had so much abdominal pain it was scary.  Plus I looked like I was about nine months pregnant. I could barely get into the car my stepdad my mother and my sister in law all had to help me in and out of my chair.

 When I got home I hopped right in the bed and was so thankful to be home.  I was so happy to be with my kids.  Braden had to surrender his bedroom to me.  It was too high of a transfe to get into my bed so I had to use Braden's room.  The kids  stayed in the room with me all night, playing with their toys and watching TV.  That night there was no place on earth I would rather be. I was so happy to be home with my kids.  The next two weeks with the hardest weeks I've ever had since being in a wheelchair. Because of the pain from the surgery I didn't move much, I didn't leave the house, I didn't drive. I did nothing but lay in bed get into my chair for an hour or two until I got sick then back in bed.  I know I needed to heal from the surgery but all this sitting around and doing nothing really took its toll on me.  I've always been a positive person.  But I hit rock bottom.  There was one particular day where I just couldn't handle all of this.  I just cried all day.   I just wanted to give up. I missed my old life so bad.  I hated to see any photo throughout this house of me standing. I struggled so hard this week.    I've learned you can't live in the past. And as crazy as it sounds I want to forget about the past.  That's how I get through every day .  A friend from California told me to never forget about my past and who I was.  I told her I have to right now.  You have to live in the present and think about the future. 

 What's done is done and won't ever  be the same.  But I pulled myself together and got through all of that mess.  I just started doing more therapy at another rehabilitation center.  Within the next couple weeks I will start swimming and doing water therapy.  I am so excited to start swimming and getting some exercise.  Just within the past week and a half my core  has strengthened.   My sitting balance has improved.  My mobility is the best it's ever been.  I  got reevaluated at therapy and I've had significant improvements. My injury level is T6 I have sensory feeling at my T10 level. It has been a while since they have tested me.  And learning of all these improvements and feelings couldn't of came at a better time.  So I got my head on straight.   I'm ready to keep fighting.  When I showed the doctors in Panama  what kind of therapy I been doing up here they're so excited for me.  They feel with all my improvements that I am on track and meeting expectations.  Today I'm scheduling my third treatment. 

A week and a half ago I wanted to give up.  Now I'm back in high gear ready to make something happen.  I've had so many improvements since the last treatment.  Such a slow process.  I've taken so many phone calls from people all over the country within the past month. We exchange stories and they want to know about my stem cell treatment,that's why they call.  When I tell them about my life and everything I do day-to-day they are impressed.  Some have been in a wheelchair for three or four years still not driving barely making it to therapy,just struggling. Sometimes I feel like I'm not making any progress. It takes these phone calls to make me realize that I'm truly blessed.   There is nothing I can't do in my life right now other than walk.

PANAMA Trip 2/Second Entry

Chris sent this to me last Tuesday night but alas, my computer was at work and I am just getting the opportunity to post it now!  Miracles do happen.  I know it.  Keep fighting Chris. We all love you so much.  Chris reports...


I got my first intrathecal injection on Wednesday.  That was pretty intense. I felt so much pressure in my back and my tail bone.  My back was sore all night and the tingling in my legs was  nonstop.  My legs also jerked and spasmed all night.   I remember waking up in the middle of the night thinking the umbilical cord cells must have been from BamBam. Lol.   I was wiped out all night after the injection. Just exhausted. Slept for 12 hours.  Thursday I got an IV injection. No side effects I felt pretty good.  Friday got another intrathecal injections.  I felt good friday.  Therapy is going good. Working hard.  Saturday while waiting for our cab I noticed I could feel a muscle In my left side of my back right above my hip.  I kept trying to flex it all day.  I have never had this sensation.  I just played with this new feeling the rest of the weekend.  We visited the old city of Panama over the weekend.  Some of the most amazing sights you would ever want to see.  The buildings from the late 1600's. Most being restored.  Just simply amazing.  We went and had Peruvian food for dinner.  We also hit the Panama Canal.  Got a little sightseeing in.  It has been easier to do that this time, I just feel like a different person than I did in June. We had such a good day Saturday.  Saturday night I had flu like symptoms.  I guess it could be from the injections. I woke up sweating ready to throw up!  It's amazing how fast I got upright.  It usually takes me a little bit of maneuvering to get up and sitting on the side of the bed.  Having that sick nauseated feeling like your gonna vomit got me sitting upright instantly.  I fell back asleep and felt fine the next day.   I have been up and down the streets of Panama all week.     I need to get some brake lights and turn signals on this chair. I still want to walk so bad. I had a new PT on Monday morning.  My PT Lou Vina I was told was sick and this new girl would be working with me.  She cracked the whip on me.   Here I was thinking substitute teacher time to screw off for the day.  I was wrong. Lol. So many abdominal excercises.  I just kept pushing on. Monday I got my third intrathecal injection.  I had no pain or side effects that day.  I just felt the usual pressure when the cells were injected.  But that night i could feel my muscles in my lower back really flexing! I am feeling my stomach too. It's not a real good sensory touch yet but If you push on my skin I can feel it. The flexing in my lower back is moving around my left side.  I just laid there on the couch flexing those muscles all night to the point of exhaustion.  I  moved them so much that I have cramps in that muscle. I only slept 4 hours Monday night.  You can't imagine how excited I feel right now.  Real movement. This has been such a slow painstaking process.   I feel like the next two bone marrow injections and some intense core work will change me.  This is my goal. I want to be able to do sit ups.  When I'm sitting in the waiting room at the clinic people where rolling out last week saying things like "I got my triceps back.". Another guy came out that same day saying excitedly,"I got my hip flexor back.". It was like these people were rolling out of a Jiffy Lube after a tune up! I was like you have got to be kidding me!!! What about me? But I got my wish.  It's like someone turned the electricity on in my back.  And it feels like its spreading out around my side. I hope it continues.I want everyone here I met here to have some sort of progress.   Again I met many people that have it worse than my injury.  I sat in the waiting room at the clinic with a mother who was there with her son. He's a quad.   We exchanged stories.  Her son was injured this past June. Her eyes just swelled up with tears as she talked about him.  Jen had to leave the room because she didn't want to cry in front of her.  I was broken-hearted for her.  I got a few months on him just assured her that things will get easier.  I just am blessed that I have so much mobility. 

PANAMA: Trip 2

 Chris sent me this blog to post last night. 

Thank you Chrissy for keeping us all posted about your treatment and for sharing your journey with us. I am confident that I can speak for the whole community of  both family and friends when I say we all love you and believe in you.  

Up at 3:00am.  We left Pittsburgh about 6:40. Flight was smooth. We connected in Miami headed for Panama.   I was lying in bed the night before wondering whether I should be making this trip to Panama.  I’m just scared to have no gains. No progress would mean I probably won't come back.   It's like do or die.  I’m trying to think positive but that thought just makes me crazy.   When I made this first trip in mid June I was a different person.   God I was so sick thinking back, both mentally and physically.  I was only 3-1/2 months out of injury. I don't know how I got through that month.  It was so hard.  Nobody will ever understand how difficult.  So far, this time everything seems so much easier.  I'm so much more able bodied and capable it's amazing.   All the furniture that took Jen, Frank and Tawnya to lift me out of I can do myself now. I'm really pumped about that. I went in and out of the sofas and chairs 3 or 4 times just cause I can.  It's a hard uneven transfer but I have been doing it with ease.  It gives me more freedom from the wheelchair.   We went to the clinic about 8 a.m.  Spent a half hour or so catching up with all of our friends from the clinic.   It was so nice to reunite with all of them.  The friendliest and caring people you will ever meet.  They could probably give a few lessons back in the states on courtesy to your patients.  We went to the back room to draw the blood.  They had a hard time hitting my vein.  All the poking around made me so nauseated.  They got about 6 of the 12 tubes drawn and the last thing I remember is telling everyone I'm passing out. Lol.  I spoke too soon about feeling better!

 They need to draw about 12 tubes for the serum for your bone marrow.  I took all my meds and vitamins on an empty stomach. All the travel had me feeling funny too.  I must have created all kinds of chaos in that office. When I passed out my wife elevated my feet, I flipped out the back of the wheelchair and the doctors caught me, picked me up, and put me in a leather recliner. I was in a different zip code when they picked me up! I must have been out for a few minutes. I guess I freaked everyone out.      I was so cold. I was soaked. I asked for a drink right before I passed out and I guess Jen threw it in my face! I had an ice pack on my neck. The nurse gave me an IV of fluids before I left just for a precaution.  I don’t know what happened.   While she was doing an IV in my other arm my arm shook uncontrollably.  As happy as I was to be back on earth with everyone, all the shaking of my arms and legs scared me.  It was crazy.   The one doctor said my reaction was different than a normal able body person fainting because of my SCI.   They wanted to send a nurse to spend the evening but we assured them I was fine.  As a precaution I have to have an EKG in the morning before my bone marrow extraction.   You know my personality, as I lay there half with it, I was smiling and saying what the hell happened.  I don't think anyone was ready for jokes yet.  I scared the shit out of everyone.  My poor wife just sat across from me sobbing.   She had cuts on her arm from trying to catch me.  She also tried to rip my shirt off me.  She tugged my collar and shirt so hard you could fit a family of six in that shirt at the same time.  I loved that shirt but it's toast for sure. Lol. I was kind of bummed the rest of the day.  It was  just not a good start to all this.  But the morning came. I was a little nervous to get the bone marrow extraction just because of what happened at the clinic.  But everything went good without a hitch.  Had  great conversations with the doctors about my progress.  They feel I am on track.   My confidence wavers at times.  But right now I feel like I'm going to do this and i am going beat this.  Treatments are every day till I fly out over the next 2 weeks.  I did great things today. I wheeled a mile home through streets, hills, and a ton of obstacles with a little assistance from my Mom and my wife at times.   I feel more human every day.  Coming back here got me out of my rut I was falling into back home.  Bad first day but a good second day!