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688MOM
06-15-2010, 10:53 PM
I apologize for not writing as soon as we got home however our youngest daughter graduated High School so we were a little busy. Anyway, I will get right to the good stuff. We arrived in Cologne, Germany after a long 10 hour flight and Amanda was in severe pain. I haven’t seen her hurt that badly since her injury. We just could not afford 1st class at an additional $8,000.00 per person so we flew economy and were at least able to get bulk head seating where I could rub her leg and back. She was in pretty bad shape when we arrived to Germany and slept the first full day. I was able to get her up to walk about 1 block from the hotel and turn around because of the pain.

Amanda had bone marrow removed on Monday the 31st of May and that went fairly smooth; other than they had to puncture a couple of spots in order to get the 20 vials they needed. That night she became very ill; almost as if her body was going into shock. We spent the next few days in our room with her sleeping, waking just long enough to eat a little bit. Our hotel was just amazing.. Anything we needed, they were on it. I didn’t think we needed Amanda’s wheel chair, but she wanted to try and see some of the sights so we thought we could see if the hotel could find us a rental. That evening the concierge brought up a brand new wheel chair and informed me they purchased it because they felt they needed to provide their customers one if needed. Happy for that; however it did not work for us as the streets and sidewalks are all cobbles and the bouncing killed her.

Wednesday at 9 in the morning was the big day. We were excited, terrified and exhausted from the anticipation. They took her to the transplant room and within 10 minutes she was in the recovery room. They told us that she had 95.5% vital stem cells and they transplanted 5,030,000 little workers. They took me in and I sat at the end of the bed and my 1st reaction every time I’m near her bad leg is to touch it and to my complete amazement I felt warmth. Her leg has been cold and clammy with a dull gray color. I pulled the blankets back and oh my gosh it was pink, not just pink but a healthy pink. And it was actually hot to the touch. I was actually alarmed, I guess because nothing was suppose to happen for at least 30 days. When the Doctor came in I asked him and he said with some there is noticeably improvement immediately. He looked at her as he felt her leg and said “this is good yeh??” Every question was ended with a “yeh”. Amanda was released that afternoon at 3:00 pm and we went downstairs to wait for the taxi. We were standing in the front doorway when she collapsed as I caught her. I got her to a chair and asked for help. They came running and we got her back upstairs to the clinic. Her blood pressure was 81/54 and she was pale with no color anywhere. The doctor came in and gave her 2 large sugar pills and then checked her sugar level. The highest we could get it was 87 and that was after they gave her juice. We finally got her to where she could sit in a chair without tilting and the doctor told me to get her back to the hotel, get her fed and to bed. I called the hotel and the taxi was there before we got downstairs.

That night was miserable for her; she had severe pain in her tail bone and a massive headache. Her ears were ringing and her vision was blurred. Her tail bone didn’t hurt if I pressed on it, it was a deep hurt. This has been continuous since the transplant off and on. That night as she lay in bed I told her to wiggle her toes (just to see “if” maybe). OH MY GOSH!!! The only toe that has ever moved was the big one and that was just a small grip movement…. Her little toe and the 1 next to it moved, not a lot but it frickin moved!!!! I could not believe it. When I showed Amanda she said “it’s always done that”. At first that angered me to think she didn’t see what I did; she said her leg was always the pink color and she said her leg wasn’t always cold…. Then I sat there looking out the window while she slept and it dawned on me, she doesn’t want to get her hopes up only to be let down “if” it didn’t work… We were to fly home on Tuesday and I was getting nervous for the flight home. I called the airlines to see if they had any 1st class seats available, they did and it would be an extra $8,000.00 each. I asked if there was a discount if the seats were still available at the gate and they said no. I could not imagine how she would feel after this flight as it was 11 hours. I guess we will take it day by day.

We were asked to stay longer than the normal 4 days after the transplant and I’m so happy we did because Monday morning we awoke and she had a fever. I immediately called and they told me to get her to the hospital. Within 10 minutes we were there and they immediately tried to stick her with an I.V. They could not find a vein and told me she was severely dehydrated, which was odd as we both had been drinking water by the gallon.. I know as I walked to the store daily and bought it as well as other liquids. Amanda has always drunk so much liquid that I never had to worry. All I can think of is that most of the water was mineral water. Did that have something in it that prevented her from becoming hydrated? Doc’s told me that we had to hydrate her as well as give her other meds to get her system back in control.. Four hours later we were headed back to the hotel with Amanda feeling somewhat better. I once again immediately walked to the store and got a larger supply of water and we spent all night drinking and drinking.

Tuesday morning we awoke at 4:30 a.m. and headed to the airport. Amanda was not feeling very well, I could see it in her eyes and as we walked toward the counter the lady asked if we were the Andersen’s and I said yes. She informed us that the airplane had at least a 2.5 hour delay and we would miss all of our connecting flights. Amanda broke down in tears. I got her to calm down and found her a seat then headed back to the counter. To make a long story short, we found different airlines that held the door open on 2 in order for us to board and we arrived home only 5 hours late.

The last few days since we have been home I seriously see a difference in Amanda. Her eyes are brighter, her skin is clear and pink, her right ankle that drops is a little stiffer going side to side and those toes; those amazing toes are moving. We checked out the video we did before we left and those babies are moving. Amanda’s organs are doing better and headed in the right direction. As for the tail bone pain, it’s still there coming and going. We believe the stems are in there making her nerves better. We are anxious to see what is to come within the 30 days after transplant.

Thank you again for all of your support and I will keep writing as soon as I can.

fastlearner
06-16-2010, 06:32 AM
What a story! RDF is still here supporting you, Amanda!

Tatonka
06-16-2010, 11:43 AM
WOW! Mona, thank you for sharing the details of Amanda's story with this procedure. Keep the updates coming!!

Amanda - we are all pulling, praying and thinking about you everyday. Stay strong!!

TwinTurbos
06-16-2010, 11:44 AM
Wow! Thanks for the terrific write up and good news!! We are all thinking of Amanda and family and wishing for the very best!! Prayers sent your way!!

688MOM
06-16-2010, 04:09 PM
I just recieved a message from someone that read the above thread and it seemed to them that I would not recommend the XCell-Center and that is the furthest from the truth. We were treated with respect and they acted very proptly to any request or problem we had.

If I had the money I would be planning another trip within 1 year, that is how possitive I am that this treatment worked. There will always be someone that any type of medical treatment may not work for them. Just like Amanda with the ringing in her ears; that was the first time in 4 years with thousands of patients that this happened, although it was listed as one of the possible side effects.

I would not have changed anything we did other than never fly Luthansa as they were always delayed and/or cancelled flights.

Thank you again for all of your support.

KtmRacing
06-16-2010, 11:01 PM
God Bless you all.

jeremy68mom
06-16-2010, 11:22 PM
Thanks so much for sharing. We will continue prayers for more positive progress. Blessings to you both.

Wish2Ride
06-17-2010, 06:03 PM
Prayers are with you Amanda!

688MOM
06-23-2010, 01:15 PM
Just a quick update, on Fathers Day Amanda told us that she was able to feel the back of her right leg. Yippeee!!!

Tatonka
06-24-2010, 08:39 AM
Man, this is just fantastic! Mona, I hope you're doing OK and feeling good through all this!?

688MOM
06-29-2010, 11:11 PM
I'm doing well... Doc switching meds around as well as more testing and trying to keep up on top of things.. My goal is to get back into health and start helping RiderDown again.. Thanks for asking.

Tatonka
07-15-2010, 05:21 PM
How's everything going for Amanda?

688MOM
07-19-2010, 12:23 PM
I once again apologize for the length of time between updates; we just have so much going on. Amanda had her 1st appointment with her Urologist since the stem cells.. Doc was blown away, the appointment was to learn how to catheter herself, but after all the testing the Doc said there was no need to learn.. There was no infection as previous even with antibiotics and her bladder emptied itself. Doc was just amazed at the length of time between stem cell and this amazing news…. Amanda will go back in one month for another check.
Amanda was standing next to the kitchen counter and she said “look mom” as she raised her ankles up onto her toes. Her right ankle was steady and amazing. Usually her ankle rolled at the drop of a hat, but now it’s sturdy.
She did a pedicure on herself doing like she always did, but the next morning she said her toes were killing her. She is known to be pretty tough on her toes when she does her pedicure but I think that will change now she has her toes back. Her toes move so cute too..
Each day she is going more and more without her brace and I am really starting to see muscle tone in her right leg. The only down fall is that she trips without it, but our reasoning for not wearing it is it gives the leg and muscles a chance to work. We went camping this weekend at a local lake and she swam, her back ached at night but she was able to swim well. Her right leg even got a tan; honestly that leg has been a dead gray color since her accident, now it is a beautiful tan.
Amanda said the other day that she just wants to take off and run… run…. run.. I asked her to postpone that effort for another few months. Last night in the kitchen she was walking funny and I asked what she was doing and she said “look, I can almost scuff my feet”. WOW, I never thought about the fact she was unable to scuff her feet. The simple things we take for granted.
Thank you again for all of your prayers and thoughts sent our way. Mona

fastlearner
07-19-2010, 01:52 PM
Great news! Thanks for keeping us updated!

track_momma
07-21-2010, 10:25 PM
It is so good to hear the wonderful improvements!!! I will hold Amanda and your family up in prayer. You are strong and courageous. Keep up the wonderful work with your daughter! She is lucky to have you as you are her. God Bless!

Tatonka
07-22-2010, 07:37 AM
Just incredible! Please know that we are all behind you and keeping you in our prayers. Your strength and determination is inspiring!
:thumb

688MOM
07-26-2010, 04:07 PM
Amanda got on a normal bicycle last night and rode the thing to the end of the street and back... OH MY GOSH!!!! She was able to keep her foot on the peg by herself. I am so excited!!!

Tatonka
07-26-2010, 04:16 PM
Wow!!!!

:cheers: :headspin: :awesome:

jeremy68mom
07-26-2010, 09:03 PM
How amazing and so good to hear some fantastic news for ya'll. Prayers continue.

Amanda688
07-26-2010, 10:47 PM
I must say I am very sorry for not writing anything on RDF since we got back from our trip to Germany. I have tried several times to write something but I just can’t seem to find the right thing to say. I am not good at expressing my feelings; physically or verbally. My Mom said today I need to write something even if I just ramble, it doesn’t matter. So here I go…I would like to start out by saying thank you for everyone’s prayers, thoughts, and thank you to the people who helped make this trip possible. I feel truly blessed; blessed for the love I am surrounded by and blessed to be where I am today. Every doctor I see says after they look at my medical files they expect a girl in a wheelchair to be coming in, not a girl walking. Everyone says how lucky I am and I always said yes I know I am very lucky, but I don’t think I fully understood and believed how truly lucky I am. I feel I can honestly say as of today I truly believe and know I am blessed and lucky. From some reason I am one of the lucky people that suffered a SCI, well I am lucky period. Whether it is luck or the man upstairs looking after me, all I can say is I realize I am blessed. The last three and a half years have been extremely hard and I have definitely had my highs and lows. I started this journey with my injury, being paralyzed from my belly button down to as of today where I can walk. I can’t walk fast and I have to wear a brace but I can walk. I was extremely thankful I can do that, and then I was given this wonderful chance to get stem cells. I honestly went through a lot of mental talks with myself before we went and while we were there. I felt like I should be thankful with what I have and felt like I was being greedy for getting stem cells. I was so much less deserving for it than other people out there. But a close friend of mine said something that made sense and made me look at the bigger picture. She said God presented you with the chance to go to Germany for a reason, so take it. So that is how I look at it now, I was given a wonderful opportunity to better myself; not just better me for today, and help me walk better, but help me in the long run and fix me inside. So thank you everyone for everything, and most of all I want to thank my wonderful Mom for putting up with me :)
Ok so these are the changes I have seen since the stem cells. I can now wiggle my toes, their movement is a little sporadic but they do move. I now have some feeling on the backside of my leg. I can also feel my toes, they are hyper sensitive but they have feeling. My ankle is probably 70% stronger, it doesn’t role all the time. I can actually do toe raises to a certain extent without rolling my ankle like it use to do. Which is two pluses right there: my toes being able to do that in the first place and my ankle being strong. My leg does have color now and isn’t an ice sickle all the time. I have noticed major changes even though I usually won’t straight out admit it to people. I am always trying to do new things and fidget a lot. Just like my Mom telling about me trying to scuff my feet the other night. From day one of my injury I have been trying to do new things and fidgeting tons. I believe that is probably one of the reasons I have gotten back what I have. As far as my Mom telling about me wanting to run…I promise if I ever do get to run….i am going to be a running fool, I can’t wait. For other injured people reading this, I hope you keep trying new things and pushing your body to its limits. Always have goals, even if they are small and you progress them to bigger ones as you accomplish them. Everyone needs to keep persevering and having faith. One last thank you to end my post. THANK YOU EVERYONE!

TwinTurbos
07-27-2010, 08:59 AM
This is all such great news Amanda!! Thank you for posting it up here! Please continue to tell us all the new things you are able to do no matter how small. You have delivered a powerful message that I hope other injured riders take to heart. Set goals, persevere and have faith!!!

track_momma
07-29-2010, 07:04 PM
Amanda,
I am glad to hear from YOU!!! I know you don't know me, but I have been checking in on you and your mom. You are inspirational to us and to my son. I hope you continue to do well and keep up the progress. My prayers are with you!
Diana

MotoCorey721
08-09-2010, 06:59 PM
Hello Mona and Amanda, my name is Corey Coyne. I am 22 years old and suffered an "incomplete" SCI when I fractured my C5 vertebrae while practicing at Perris, CA on October 1st of last year. I haven't been posting regularly, but I have been following Amanda's story and I gotta say that her ability to keep a positive attitude during her recovery is impressive. I am glad to hear that the stem cell treatment showed promising results and I hope that full recovery is attained from it. As for myself, I am also fortunate enough to be walking again, but with a fair amount of difficulty because my right side is much weaker than my left (recent MRI results showed severe myelomalacia - softening and degenerating of the spinal cord at the injury site). I was wondering how did you decide where to go for stem cell treatment and what did the process entail?
Both of you keep up the inspiring attitudes and hard work!

688MOM
08-10-2010, 04:59 PM
Corey, I am so glad you wrote us as your storey sounds pretty close to Amanda's. Like I have said in the past, whenever I saw a news program that mentioned “stem Cell” therapy I would write, phone and email until I heard from them; in which each case was her injury was too old, etc. While on RiderDown I spoke to a lady named Tammy Potts whom just took her son to XCell-Center and they were having great results. I looked up on line and studied their approach; I just knew in my gut that this was where Amanda was supposed to go.
Approx 7-8 months ago Amanda's health started plummeting, to the point the Docs were talking pretty drastic steps in trying to get her health stabilized. Yes, I am talking surgery, dialysis, and transplant of Kidneys and possible removal of some organs. We threw the “stem cell” thing out there at one of the appointments when tests results were bottoming out. To our surprise she said it was a good idea as America will not allow such a thing. She then told us the only place she would ever go or recommend was Germany. When asked why? Her response was that they have high standards with cleanliness and they have been doing it longer than anyone out there with great success. I gave her the website XCell-Center.com and asked if she would look into it and we went to check out. As we were walking out the door, the Doc yelled out, “If this were my daughter, I would already be there”. I went home and finalized paperwork and travel plans, never looking back. This is what we were waiting for, as we knew this was Amanda’s only chance of getting better. If her right leg gets better in the process than that was a bonus.
Corey, please start filling out paperwork as you must be accepted in order to attend. I know that $17,000.00 (travel, hotel, food, treatment and a couple souvenirs) is a lot of money; we had to look at it like this, medications she had to take and the “surgery’s” the Docs were talking, we were looking at over $100,000.00 here in the U.S. Don’t get me wrong as I love my country, I just feel sometimes they get things backwards in the medical world. I feel the Pharmaceutical companies are behind the U.S. not approving “Adult Stem Cell” therapy. If people did not need medicine, would they still take medicine(s)? I know we sure wouldn’t. This would take a huge chunk of change out of their pockets and they don’t like that, so they will fight it tooth and nail until the end.
There was another person on RiderDown that spoke of embryonic stem cell in another country other than Germany. I went to the website and looked into it and here were some “red flags” for me. First off, they used unnamed animal embryonic stem cells. Second, what is the long term effect on the human body after using unnamed animal embryonic stem cells? Third, there was no real set price; you may be responsible for more than you pay up front. Fourth, you stay over there for a long length of time (thus interrupting our way of life here with jobs, family and friends). And finally, Germany was the only country Amanda’s Doc would put her license on the line for. That says a lot right there for me.
Like you have read when we first posted after coming home, we saw immediate improvements within 15 minutes after they transplanted her Adult Stem Cells. So did the other two women that had it done that day. If you would like to talk with us about this more by phone, please private email me with your phone number and time you will be available and we will be glad to contact you.

track_momma
09-16-2010, 08:37 AM
Hope the family is doing well and Amanda is continuing with her successful recovery. Been thinking of you! Let us know how you are when you get the chance.
Diana

688MOM
10-06-2010, 03:01 PM
Once again, time gets away with me and I again apologize. Amanda received great news from the Urologist just last week. She has completely released her with no medications, no Dialysis, no Transplant List. Amanda is to see her 1 time a year. YYIIIPPPEEEE!!!! The Stem Cell worked just as we had hoped. I will never be able to praise the XCell-Center enough as they have helped Amanda beyond our wildest dreams. Thank you again to all who have sent well wishes and prayers her way.

Tatonka
10-07-2010, 04:10 PM
Wow! Mona that is fantastic! :flip::flip::thumb Amanda I am so happy to hear this news!! Please keep us updated, we really do want to hear from you!!!

1151map
10-10-2010, 11:26 AM
Great News !!!!!!!
Once again the center is all bout healing the damage to the spine and not pushing meds or alternative treatments...............I bet Amanda is so excited and relieved at the same time.

Cheers to her success,

tammy potts

track_momma
10-11-2010, 11:46 AM
Great news to hear!!! So glad things are going well for all of you!
Diana