Friday, May 14, 2010


I haven't written in ten days because I have a migraine. For those of you who have ever had one you know what I am talking about; for those of you who have never had one you have no clue how it impacts your daily life. You just can't shake it or wish it away. If you are paying attention you may pick up the subtle clues that it is coming on. Personally, I don't pay close enough attention to the warning signs because all of a sudden I will realize that my behavior has changed and then I am past the point of recovery.

The first sign that I am protecting myself is when I start to wear ear plugs. I become sound sensitive. I will try to protect one side of my brain from the world assault of noise. I don't realize it but I will stand with one ear against a wall to buffer the noise. Then I will tilt my head and pull my shoulder up to close the gap when sound has a chance to enter. Then I start to put my finger in my ear. I then always reposition where I stand in the room if it is too loud. I then distance myself from anything or anyone that is loud. Then I find that I start to tear a napkin and put it in my ear. Then I start to carry real ear plugs with me and always have one in my ear. When I still feel decent I make an effort to hide the ear plugs .... then I don't care who sees them and you know I turned the corner.

The next sign is that my eyes get sensitive to light - all light. It again starts slowly and I don't realize that I am compromising my life. I notice that I am sitting somewhere where I am usually comfortable and now I am noticing one florescent light in the room. At first I just tilt my head down further so the top of my head covers the light. Then you notice that you arrange yourself so that the light is blocked by other objects. I sit in a chair and put myself at an angle to block a light. My back is always to the light. I start asking people to turn off a light. For a while I am careful with all florescent lights. They drain me, but I am good with natural light. Sunglasses are a must. Then all lights start to bother me. Then sunlight bothers me. You stop using the computer. You make all these decisions to shrink your world all the time and don't even know you are doing it. Then you realize that you need a dark room and NO light can come through the window. When you start to wear a washcloth over your eyes in the really dark room - you know you hit bottom.

However, I AM lucky because I do not get pain with the sound or light migraine. I am grateful for that but it might be why I miss the signs. I know that stress brings them on. I am obviously in an incredibly stressful situation. I know that I need sleep. I know that I need to eat healthy. I know I need to exercise. There are things that were preventable that I did not do. Also, there were things and situations that I had no control over. I am fully aware of all of this. I made some very deliberate choices, for very specific reasons, and I am paying the price. Now the hard part of paying the price for decisions I made is that I am the caregiver. It is not all about me, it is about my daughter.

Caregivers nor mothers can ever, ever get sick - it is just not allowed. I cannot begin to imagine how scary it must be in a foreign country (or anywhere) to have the person you count on to take care of you day in and day out not feel well. Not be there 100% like they usually are. When you really do not feel well you cannot fake it. It is something that you cannot hide. I will get better, but it has taken a toll on Monica and I am sorry for that. I hope that as she grows up she understands that I have done my best to take care of myself the best I can, but her life situation touches me as a mother deep in my soul in places that I didn't even know existed and that are raw with a protective instinct to take care of her (and my two boys). I will take care of her and put her interests in front of mine always - and sometimes I'll pay a price. All mother's try to learn balance and to put their oxygen mask on first. Not sure I can yet.

My body must have known it had to hang on until my dear Hope arrived. As many of you may know, Hope arrived on Mother's Day to spend our last week here together being a tourist and offering us support in our last days of treatment. She is my angel as I expressed before. I could get sick because I knew as a mom and caregiver that Hope could take care of Monica. She always helps me parent which is so wonderful. I need the team effort and Monica desperately needs her too. They have a fabulous relationship which is a bonus.

I am on the computer which is huge with the migraine. I am excited because this hopefully means I have turned the corner and can anticipate getting better. Maybe tomorrow I feel up to going outside even though it is 112 degrees (we have had the hottest March, April and now May on record!). I would love to be able to go shopping with Hope and Monica and be a tourist rather than lying in bed waiting to get better. I really want to eliminate all my stress and the blog is one area of stress. I will spend time writing when we get home. I do like to write and realize that our experience in India and the pictures and video we have taken are something that needs to be shared. I do not have the time to write nor energy while advocating treatment and being a dedicated caregiver to Monica. Her health situation is so unique and our experience is very different than all other patients it seems important to share.

We leave India on Monday, May 17th. It is time - we are ready.

Tuesday, May 4, 2010

Meeting With The Doctors

I talked today with Dr. Shroff and Dr. Verma about Monica trying to get back her sensation. It is amazing how I am hopeful that Monica's body returns to "normal" and have a difficult time putting myself out there saying that she will out loud. I really, truly, deeply believe with all my heart, but just can't quite get myself to say, "When you feel this, or touch that, or smell this, or see that ...." I always talk about the day that it will happen - maybe tomorrow, next week, next month, next minute. I feel like she is in there and we just need to unzip her to get her out. Where is that damn zipper!

The doctors are incredible to talk with because they are positive that she will return to "normal." Dr. Verma, as Monica would say, talks in "absoluteness" not hope. He does not believe or is hopeful but is absolutely convinced that she will be normal. Dr. Shroff believes she will leave here with sensation and because Monica last time was given the expectation of being able to walk out of NuTech last time, and Monica did it, it is hard not to believe her. All of this is due to Monica working really hard, being so incredibly disciplined and determined, and having competent and capable professionals who believe that their human embryonic stem cells can make a difference. I told them that their professional compassion has allowed Monica to feel safe and have the confidence to let herself believe she will get better. What a gift.

The doctors are so convinced that I told them that they better have documented who she is and how she has gotten to this point before the sensation returns. We laughed because I said I could go back upstairs and she could have feeling right then. I just really want them to have proof of her journey to prove to the world that human embryonic stem cells work. We talked about having an independent film crew come in and film. Unfortunately it is not just what a doctor can say and therefore have it believed, you have to have outside third parties to verify evidence. You cannot use another medical doctor or test as proof because it becomes questionable even though there is no relationship. I believe, in her practice everything is subject to disbelief and questioning because it is a new scientific frontier she and her patients are creating. I have witnessed the miracle that science has created in several of the patients here and with Monica being able to walk and sweat again.
They asked me if people knew about Monica and her disease. I said I haven't been willing to go out and publicize our situation. A lot of our friends at NuTech have gone out and done newspaper articles, community outreach, etc. because they were fundraising. I haven't had the time or energy to coordinate a fundraiser yet and therefore have not publicized our story. I said I have a story, but it is still a sad story and I want to go out with the happy ending. I told them I've looked up Oprah's website and I have 1,000 words. The story we have is not the story we are ready to tell. I told them that you get my daughter back to "normal" THEN we have a huge story - walking isn't enough. Then I will write Oprah, CNN, People Magazine, write a book, etc. to tell the world about human embryonic stem cells and my girl. In one way I want to do that today to try to find someone else like her, but I much rather publicize our success and let that individual know they have hope for a cure as it cured my child.

Of course there is the "cheerleader effect" because we all want it so much, the patients are willing to do anything for it, work extremely hard at eating well, doing physio, and visualizing the changes that need to happen to heal their body. This place is inspirational when a quad is able to flex a finger that was completely lifeless days, hours, minutes before. It is inspirational when you begin to realize that you can hear what your friend is saying a little clearer and you are not leaning as close to him to understand his words because his vocal chords are stronger and his breathing is better. It is inspirational to see someone walk in a straight line for a few feet when before they could not because their balance was so bad. It is inspirational when you know a paraplegic or quad has a little more bladder control or sensation. There is a special bond that gets created in moments like that, but it goes deeper because you also want to be there when that person does not feel well, has a bad bedsore (they treat it with stem cells), or is depressed. They help you become more patient with the process and yourself. So yes there is the cheerleader effect, but incredibly dedicated hardworking patients AND science is what is making the difference in ALL of these patients. All of this is a very slow process because we do not know when or where the stem cells are going to make the difference. However, it's like a lovely birthday present when it happens.

Physio for Sensation

I am having a difficult time formatting my blogs and getting them posted. I guess I want to be more creative than the "blog" will allow me. Frustrating and I don't know Html to fix the problems I create. Therefore you are receiving posts now not how I purposely have designed them and with some grammatical errors. I get stuck and post it in a panic and then am locked out of trying to correct my errors. Since time is of the essence .... this is what you get for now. I am approaching this as something is better than nothing.
Monica has been hard at work noticing different sensations around her. She has to pay attention to what sense she is using and think about what she remembered that sensation used to be like. She is doing this in her everyday life here, but during her physio they have about ten different items they are using to try and trigger a feeling.

For instance, she holds a hot water bottle that she puts on her face, legs, arms, under her feet, on her hands, etc. and needs to concentrate on that specific area and tell herself it is hot and then try to find in her body any sensation that gives her that feeling. After she does that item she moves on to a brush and repeats all the places with concentration, then she uses something rough like the top of kitchen sponge, sharp item (she is poking her hand in the picture), cold pack (which is the blue item in the picture on her forehead), cotton ball, etc. The doctor or physio person may touch the sole of her foot, she looks at it, then looks away and tries to feel it. So far there has not been any results, but we are looking at the situation like a stroke victim and working repetitively to try and reteach the brain what sensation feels like.

Sensation for you is different than sensation for me. I do not know if the same piece of cotton material feels the same to you, like it does for me. Therefore, we want her to recreate her own "vocabulary" of sensation. Another example would be using your vision to see colors. Some people see the world black and white and cannot detect color. We do not know exactly what color red your eyes see versus what color my eyes see. To relearn colors, I would then note that that shade of color represents red and work on learning green as a new color noticing any changes. I would create a new vocabulary for color based on the different shades a color may have even though I cannot actually see the color. When Monica eats something I am trying to teach her to think about why she is eating it and does she have any sensation in her body indicating she is hungry or full. She eats a lot because she is bored. Why - I do not know the answer nor does she. She can be busy on the computer but want to eat. Before she eats she needs to recognize that she is either bored or does she really need to eat. (I always let her eat because I think her body in some way is saying it needs fuel - sometimes I have attitude because she just ate a huge dinner and it has only been one hour, but I have to believe her body knows best.) By doing these exercises we hope to trigger something, somewhere in Monica to start to begin learning sensation.

Monica just had another procedure and is resting right now. We obvisoulsy are hoping for any, any type of sensation and will let you know once it happens.

Wishing with all my heart ...

Saturday, May 1, 2010


I realized that we have never shown pictures of all our friends / patients here at NuTech. When we first arrived there were sixteen patients and the hospital has rooms for nineteen patients. People come and go because you usually commit to either a four, eight or twelve week treatment time. However, Monica's situation is different and I really believed it was important that she come longer to give her every opportunity for healing. We are here six weeks.

Today we have seven patients. Last week was tough for us because five of our good friends left. Tomorrow another patient leaves and we believe someone else is coming soon. On the left is Ryan (red shirt), from Australia, who had a motorcylce accident and is paralyzed. He is here with his brother for two months. Next to him are Nina, Monica, Ashley, and Corben.

This is Ashley who is Monica's best friend here. His first treatment was when we were here last time. He came for three months and we were here for two of those months. We spend most of our time with Ashley and Raven (his caregiver and best friend since junior high school!) who are from New Zealand. Ashley had his accident playfighting with a friend nine years ago and became a quadriplegic. They have become very special to us and are like family. They leave Wednesday.

Gabe is from Minnesota and had his accident on a school trip to Costa Rica bodysurfing. He is a quadriplegic and we met him on our first trip. He also was here for three months when we came for our two month. We became really great friends with him and his dad Matthew and they became have become like family to us. They left last week.

Michael is from Australia (in the middle with his brother John) and has motor neuron disease/ALS. He was here for two months with us when we came last time. He also has become like family to us. They left last week.

Corben's accident was during a high school football game eighteen months ago making him a quadriplegic. He is from California and is here for three months. This is his first treatment. To the left is the security guard, ward boys (cleaners), night manager (orange shirt), and Rita (in charge of housekeeping) with Monica. His mom and aunt are here and they leave in June.

Nina is here with her with her dad for three months from Thailand. Apple is her caregiver and this picture was taken during physio. Nina was in a car accident and is a quadriplegic. Her accident was three months ago. Nina leaves in July.

Vicki has multiple sclerosis and was here with her husband Tim. They are from Washington. They were here on our first trip (this was their fourth treatment) and lived across the hall from us. They left last week.

Jerry is from California and has Lyme. I spent a lot of time with his wife Dolores walking every morning around our neighborhood before I got a very bad dry cough and had to quit. This was his first treatment and they were here for two months. They left last week.

Shannon was in a car accident and is a quadriplegic. She is from Dallas. I spent time with her mom Lola doing chores and she helped me edit my paper. This was her first treatment and they stayed for three months and left last week.

Ron is from California and was in a car accident which made him a quadriplegic. This was his fourth treatment. His mom and aunt came with him and they left two weeks ago.

Betty is from Virginia and fell becoming a quadriplegic. She is in the physio room. Betty is here with her daughter for two months. This is her first treatment.

Adrian is from North Carolina and is being treated for ALS. He is an outpatient staying close by with his wife. This is his first treatment.

In every patient there has been some type of improvement. Everyone is a little stronger physically. You may not visually notice the changes in Monica, but we all know that the stem cells are working in her body to repair, replenish and regenerate. I believe time is repairing damaged nerves and when that is done she will be able to feel again. Miracles happen here. Just to travel to India for treatment is a tough journey for each one of these individuals. Each one of these patients has an incredible story to tell about survival.

Friday, April 30, 2010

Blog Updates

Nothing new going on - believe me, no secrets - the blog will be one of the first things we update when she notices something. Monica and I struggle to update the blog when you feel you don't have anything to report. So, we are going to try and get down to some basics and talk about our daily lives and India more. We have taken thousands of pictures and not shared any of them with you. Additionally, I have taken some video of one of Monica's procedures that I want to learn how to put together and into the blog. The pictures and video take so much time to organize!

Even though I have not written in the blog recently, for the past few months I have been working on a case study about Monica. I have been observing, researching, analyzing and writing about her daily. It has been a very difficult task because it forced both of us to really look at the progression of her disease and how it has affected her daily life. It also caused a lot of reflection and grieving for myself. My goal has been to capture what her life looks like today and try to explain every detail and answer every question that any one has about her condition. When you meet Monica you meet a "normal" teenager. However, when you look much deeper you realize how amazing and high functioning she has become in a body that does not support her.

I am really glad that I have spent these past few months compiling the information. I knew Dr. Shroff, Dr. Verma, and Dr. Sudeep would be interested. Based on our last blogs you could probably sense that they were having a difficult time understanding why Monica would be willing to do stem cell treatment, but not a lumbar procedure. I didn't plan on giving my paper to the doctors, but wanted to capture what she felt like now before her sensation returned. Once it returns we will never recall these details. However, based on what was happening with treatment I realized the doctors needed to understand Monica as a person better and maybe what I had written would trigger some new direction in their thinking on how to treat her. Reading my paper they now understand much more than we could articulate on why we must follow her intuition. They now have a new approach in their treatment plan.

Keeping the faith ...

Friday, April 16, 2010

I Want More!

The trip to India this time has been much more difficult for me personally. Before we left last time we did not have any expectations. We did not know what a miraculous place of healing this hospital was nor the power of human embryonic stem cells. Now I know what can happen because I have seen it with my own eyes and have felt it deep in my soul. The experience here changed who I am as a person and how I view life. It gave back hope to Monica, myself, my family, and our friends.

I was so caught up in the excitement of Monica's progress last time little did I realize that she became a "poster" child on what stem cells can do for people who come here. They use her as an example of how stem cells can change your life - as they should. The second day of receiving stem cells Monica saw results in that her body started to sweat. It was a glorious day! Over the course of almost three months Monica showed progress in dramatic ways, but the most obvious was that she came home walking. She worked her ass off to be able to accomplish that goal. You look at her now and she appears "normal" because she can walk.

I arrived here not wanting to have any expectations, but I absolutely do have them. I believe so strongly and deep down to my core that we are going to have success. I absolutely believe it is possible. I believe that the power of positive thinking and visualization can create miracles in your body. However, no matter how much you pray and think positively it won't make a difference if you don't have the science to create that change. We are at that place where everything can come together.

I believe that there is a switch that needs to be turned on in Monica's body. It feels like we are close to finding it, but it is still out of reach. I will search forever till we find that switch! We can all sense there seems to be a minor disruption in her body which is causing major complications. We have seen past results which are huge, but I have become greedy and want something more every day. A little success is never enough - I want it all.

Monica has so many opportunities for improvement. The doctors base their protocol on the "changes" your body makes once it receives stem cells. How you react determines your next step in treatment. Patient feedback is imperative for the doctors. Monica is very difficult to treat because she has no feedback loop and therefore it is difficult to tell the doctors any "changes." I have to be extremely diligent in noticing every little nuance in Monica to provide feedback of changes to prove that the stem cells are working. Just as an example I am looking at whether her eyes are dilated more than normal, if she has an attitude or mood shift, if her body has an extra spasm, if her movements are a little different, etc. I hadn't noticed a change in her until two days ago.

Her "change" is that the muscles in her neck are engaged a split second longer so that she keeps her head up straighter when she closes one of her eyes. This shows that the that the stem cells are working hard in repairing and rejuvenating that area - more importantly it means that they are going to other places repairing damage in her spinal cord and brain.

As Monica posted earlier, her vision is her lifeline to the world and life itself. Her vision is double horizontally (side by side) in the right eye and she has normal vision in the left. The vision in both of her eyes is blurry and the problem is neurological which glasses cannot fix. When looking at something, Monica knows that the actual object is always on the left. Monica cannot close both her eyes, or let anyone cover her eyes, because she will collapse to the floor without putting her hands out to prevent injury. She loses all sense of proprioception (where your body is in space). If she is sitting she will slump down in the chair. If she closes just her left eye then the left side of her body collapses; if she closes the right eye then the right side of her body will collapse. She can even feel her body start to fall if she blinks too long. Monica will push you away or turn away if she senses her eyesight will be impaired. For her to be able to move her body she has to have her vision. She uses her vision to orient herself in space and make her body move. If she cannot see her feet when walking then she will fall - this is why she walks with her head down.

Dr. Shroff and Dr. Verma have been very good at listening to Monica and honoring her wish not to have a lumbar procedure. The doctors have hired two people dedicated to researching what possibly could be happening with Monica and whether there is any other person in the world like her. So far they haven't been able to find anyone in the world with symptoms like hers.

Currently, we are having Monica touch her skin and telling herself what that should feel like based on her memories. We are trying to teach her brain that the touch represents a sensation. She needs to relearn what touch means. We are approaching it like a stroke victim is taught speaking or walking.

I will not have Monica do anything that she is not comfortable with and will support her 100% in any decision she makes. She has incredible wisdom and intuition and knows what is best for her body. It is her life and she is the one that has to live with the consequences. She is a pioneer willing to push the boundaries of science and herself to get better. I am incredibly proud of her!

Keeping the faith.

Tuesday, April 13, 2010

Sour Patch Kids

Why do I love Sour Patch Kids so much? It's a joke between Ashley, Raven, my Mom, and I that I can sit there and eat an entire bag of Sour Patch Kids without even realizing it. Ashley is from New Zealand and has never had Sour Patch Kids before so I decided this was a good reason to open the bag. Days later they are gone. I'm telling you guys about the Sour Patch Kids because they are a comfort to me. When everything else is chaotic you need comfort. Sour Patch Kids for some reason are my comfort. My Mom and I brought pounds and pounds of candy, but for some reason Sour Patch Kids make me the happiest.

On a different note: movie nights! Ashley brought a hard drive with about 40 movies on it, and we decided to have movie nights now. We've had I think three or four I think now. It's pretty funny because we put both Ashley and I into his bed and my Mom and Raven sit on either a chair or the bed/pad/chair/couch thingy. I bring down my blankie, a couple stuffed animals and am content for the two hours or whatever that we are watching a movie. We always have to eat some candy during the movies too! I'm so glad we brought all the stuff we did. Movie nights are a nice way to hang out and just kind of be there for each other.

I'm off to bed before my Mom gets mad at me. Sorry for the delay in posts I just haven't been able to think of what to write!

P.S. We don't go out much because it's about 107 degrees during the day, and it's just going to get hotter!! AHHH.

Sunday, April 11, 2010

One Of Five

Ashley and I were talking about my numbness the other day and I realized something. I forget what it's like to feel anything. I'm pretty sure that's how I learned to cope with it, I had no hope that it would come back so my brain let go of those memories, I think. We are all talking about feeling this feeling that and I honestly don't know what is going to happen when I feel (obviously I can't feel still). Ashley and I have had quite a couple conversations about everything that has happened and he's fascinated by it. I don't know how many of you know this, but if I close my eyes I can't hold myself up. My vision is all that I have. Ash and Raven had been told this, but they didn't REALLY know until Dr. Shroff one day asked me to focus really hard and train my cells then close my eyes and I collapsed into Raven. Dr. Shroff and I both expected it, but no one else in the room did. It's one of those things that no matter how many times you may say it, you don't get it until it happens.

The fated Lumbar Puncture. The Lumbar Puncture is the one procedure where the stem cells actually get injected INTO the spinal cord. With the Lumbar Puncture you usually get headaches, nausea, hallucinations (sometimes), and you feel like crap for a couple days. I have had my foot firmly on the ground saying I will not do it and no one gets why. Tonight I sat down with Dr. Sudeep and he explained to me why they want to do the Lumbar, and I told him why I wouldn't do it. It has nothing to do with the headaches or things like that. It has nothing to do with my past trauma with Lumbar Punctures. It has nothing to do with the fact I don't trust Dr. Ashish, I trust him with my life. It solely has to do with the fact I am afraid. I'm afraid I will lose the one thing I have left, my vision. To everyone else it might seem I have a lot else to lose, but my vision is how I live, you take that away and I am dead weight. I can't move at all, I would be a breathing blob (if you can imagine). My vision has been badly affected through everything and a procedure last trip made it even worse, and if that were to happen again, I would pretty much be blind. A description of what everything looks like through my eyes: blurry blobs, that are double (side by side), the one on the left is the real one, if you scan something enough I can make out bits and pieces of it. When I was explaining this to Dr. Sudeep I started crying, I didn't mean to it just kind of happened, I'm doing it again right now because I wouldn't be able to do ANYTHING without my vision and I don't know how to explain it to people to where they understand.

Ashley, Raven, my Mom, and I went out to dinner tonight, and we had talked to Dr. Sudeep while waiting for a taxi to pick us up. Ash heard most of the conversation between Dr. Sudeep and I, but he was also trying to organize a taxi to pick us up and wanted to give me privacy. When we piled into the car (I had to sit in my Mom's lap in the backseat behind Ash and Raven was in the middle holding Ash's wheelchair) I had my head between the window and Ash's head rest thinking about everything Dr. Sudeep and I had just talked about the whole way to the restaurant. At the restaurant I apologized for crying earlier and Ashley looked over and said "I wasn't trying to eavesdrop or anything, but I heard what you were saying and now I really get it, your vision is everything to you, it's all you have. You can't lose it. Without it you would have ... nothing." It was like someone else finally got what I have been trying to say, and I think Dr. Sudeep understood too. For now the fate of this procedure lies in my hands, it's up to me if I do it or not. I got a lot to think about.

P.S. Ashley goes in for the Lumbar Puncture tomorrow afternoon. Send positive thoughts and hope everything goes well! I have my fingers crossed.

Friday, April 2, 2010

Catheter Procedure

I have so much to say about the last 36ish hours, but I have no idea how to put it into words. I'm sitting here starring at the computer screen trying to figure out how to word it. Dr. Shroff requested we meet with a neurologist so we spent yesterday morning doing that. He came up with a couple syndromes/disorders/diseases that I have been tested for and ruled out, but he wants to run more tests that would fully eliminate them. We haven't had the chance to talk to Dr. Shroff about what she wants to do yet. To me it was just one more doctor to add to the other 150 I've seen in the past, I've become immune to meeting them and I feel like I am just telling them a script because I've had to repeat it SOO many times. It's nothing personal, it's just all that I've been through.

As I wrote in my previous post I was going in for a procedure, and I did. We left yesterday after my appointment with the neurologist, and returned "home" this afternoon. I was expecting to be there much longer than we were. It was a two day so I thought that would mean two nights and you come back the next morning, guess I was wrong considering I'm already back. The procedure I did is known as the three day epidural catheter, but Dr. Shroff and Dr. Ashish decided we should try two days first and see how I react. The target of this procedure was feeling. That's pretty much the target of this trip. Dr. Shroff thinks I will have feelnig by this weekend, and I was speechless when she said this. I am hoping I do, but I do not expect to have feeling this weekened. I am determined beyond belief to have feeling back, but I do NOT know when it might happen.
Dr. Ashish placed the catheter in the epidural area, but the stem cells get absorbed pretty much right away into the spinal cord. The main focus was the dorsal root ganglia because this is where the cell bodies of sensory nerves are. It makes sense if we are trying to get feeling. After getting my catheter in Dr. Ashish taped up my whole back, and then I rested on my back for four hours with the foot of the bed raised on bricks. After the four hours I was allowed to move around a little and I walked across the hall and visited with Gabe and Matthew because Gabe was getting a procedure done too. Dr. Ashish came in while I was over there and told me I was ready for my second dose and it was "punishment time again" this meant I was stuck in bed and not allowed to move for x amount of hours. The second dose I was only stuck in bed for two hours on my back with the foot of the bed raised again. Usually with the three day they have you rotate on your sides and stomach, but because we are REALLY going after sensory I was on my back the whole time. It's hard for me to explain exactly why that is, he explained it to me, but I don't really remember the correct terms. I was allowed to sleep in whatever position I wanted to.
When we got up in the morning I had an omelet and toast :) and met with a physio just to keep my legs going. After breakfast and fast physio Dr. Ashish gave me my last dose of stem cells through the catheter and I was in bed for two more hours on my back with the foot of the bed raised with bricks. When my two hours were up a sister (nurse) removed the catheter from my back and I was free to go. So far I haven't noticed any changes, but we are hoping that within the next couple days something will be different. I got over around 200 million stem cells in the past 36 hours. That is jaw dropping to think and really get your head around.
A couple of us went out to dinner, and boy was it nice to all be together again. We were laughing at old memories from last trip, and just hanging out. It was nice AND my first time eating Indian food since we left here. I sure missed the butter naan. I'm with a part of my family again, and I can't find the words to describe that feeling. On the walk home Raven, Ashley, and I were talking about how it feels like just yesterday we were here, and the last four months just kind of flew by now that we are actually here. It's a strange thought, and hard to understand unless you've been in that same type of situation, but it makes sense to us.

There's been a lot going through my mind about everything that I've been through lately and I want to let you all know how lucky I am to have all the support you guys give me and how fortunate I am to be able to do this treatment. When you are lying in a bed for days it's hard not to think about everything, where you come from, where you are going, and what this thing called "life" really is. It's difficult thinking, but interesting at the same time and sometimes it's necessary to just sit and pause for a moment. Don't miss the little things along the way, they are the most important :).
It's getting late so I'm going to try and sleep now! Good night and good morning :)

Wednesday, March 31, 2010

Jet Lag Does Wonders?

Second day here, super super busy. Thanks to my friend jet lag, I went to bed at 5PM woke up at 1:15AM wanting dinner, then fell back asleep and woke up again at 5AM and decided to start my day. It's amazing how much you can accomplish when you wake up so early. I had the chance to Skype with friends and family, unpack, shower, eat breakfast, and wake up one of my best friends (who got here early early this morning) all by 9:15AM. If this was last trip none of that EVER would've happened, you can ask my Mom and Hope all about that.
We woke up Ashley and Raven and it was SOO great to see them again. Raven was delirious and doesn't even remember us waking them up. Ashley almost pulled me into his bed he was so excited. It's been so much fun to be back together with Gabe and Ashley again. Ashley stopped by our room for about an hour earlier and we were talking about how neither of us have laughed quite as hard as we did playing ping pong. Gabe is actually in our room right now and has been here for about an hour. It's just like old times :) nice to be back with them again.
Dr. Shroff saw us this morning and was super excited about my walking, but kinda sad I didn't have feeling back yet. Her goal for this trip is to "attack" my brain and try to get the sensory and cognitive. Hopefully her goal will be achieved just like last time. We plan on doing a lot more procedures than last time and actually go in for our first one tomorrow. I'm doing the three day epidural-catheter in two days because they don't do procedures on Saturdays.
My Mom and I this afternoon went and got an "investigation" (also known as an EMG) done. It was a SUPER sketchy place, but hey you gotta do it. It went fine, not very sanitary and I've got some war wounds, but no problems. We get the results tomorrow morning hopefully.
Decorating, decorating, decorating. Everyone here knows our room as the decorated one. As many of you know last time we decorated too. My Mom and I say if we are living here why not make it look like we are. P.S. In the picture that is probably the best my bed will look all trip.
Time to go maybe get a ping pong game going :). As much I miss home, I've missed here just as much. It's the right time to be here, and I'm with my second family again. It's impossible to describe what it's really like over here.

Tuesday, March 30, 2010

Home Sweet Home?

I don't quite know what to call this place. I told my Mom we are going home, but I can't put India and home in the same sentence without it feeling weird. Gabe, who was here last time, calls it summer camp. He had the same conversation with his Dad about this being "home" and came to the conclusion, it isn't home. I think I've reached that same conclusion, this isn't home.
I feel like it was just yesterday that I was here doing everything, but obviously it wasn't. It's been four months since everyone here saw me last, and they are shocked by the results. It's such an incredible feeling to walk into a room, but it's impossible to describe to someone else. A couple of the doctors and nurses can tell on my face that there is something different, I'm alive again. They didn't see it last time I was here. My smile is bigger, my laugh is louder, I'm happier, and it's noticeable.
Of course I'm happy to be here, but I miss being home so much. This trip has been a lot harder for me to leave home. Last time it was this trip or nothing and I just didn't care about what was at home anymore, but now that I'm healthier it's hard to leave my pets, friends, family, and my everyday routines. I know this trip will be good, and I'm excited for whatever results I may get, but I have no expectations for anything. We begin our six weeks today.

Thursday, March 25, 2010

The Time Has Come Again

Wow I can't believe it's already here. On Sunday afternoon my Mom and I will once again be on our way to India. It's happened so fast. As I sit at my desk writing this, I'm looking around at everything laid out on my floor ready to be put into a big empty suitcase, my cat snoring soundly on my bed, my dog coming in every five minutes because she wants attention, and my phone that keeps vibrating from friends saying their goodbyes. In three days all of this will be gone... again.
March 30th we land in New Delhi, India and will begin the second part of my treatment with human embryonic stem cells. We will be there for six weeks and are planning on being home May 18th. I'm excited and nervous all at once. Everything will be the same over there, same place that we stay, same accommodations, and same treatment. There are still no expectations for this trip. I got more than I could ever ask for last trip, I'm hoping that even more will happen and I know it will, but I am not expecting to come home with anything in specific or anything at all. Two of my really good friends, Gabe and Ashley, will be there while we are and I am so excited to see them again. This will be a whole new experience, but the same one at the same time. Another chapter in my story that I am lucky to be able to share with all of you.
Thank you for all of your support and prayers and I'm glad I am able to share my story with you as much as I can. I will keep my blog updated while we are gone, but it might take a couple days to get settled :).
Next post will be from India :)

Thursday, January 28, 2010

Week by Week

Before we started this treatment about once a week a new symptom would pop up or something would go wrong. Since coming back in November I have yet to see myself go down hill. It doesn't sound like much if a week goes by and nothing has happened, but to me it means everything. One week will turn into two and two turns into three and so on. I admit to taking everything for granted before I got sick. I was living carefree and thought I was invincible. It wasn't a bad thing it was just how I lived. Now I am so thankful for each day that I get. A week out of a lifetime might seen insignificant when you look at the big picture, but to a lot of people a week could be a lifetime. It's really opened my eyes to everything we are missing in life. We all get caught up and forget to look at the little things that mean the most to us. Mountain View High School is having the Winterball this Saturday. A couple of my friends are going and convinced me to go and I am surprisingly getting excited about it. It'll be the first dance that my brother isn't going to be at and the first dance that I will get to actually dance at in a long time. It'll be a new experience for me and I'm excited for how it is going to go. I am going to start writing down at least one thing new to try each week. The dance is first on my list.

Thursday, January 21, 2010

Two Month Update

It's been almost exactly two months since I left New Delhi and the changes I have seen since then are incredible. My mom touched on them a little in her previous post. The changes I have seen are: WALKING, sweat, cognitive improvements, and sleeping. I CAN WALK. If you met me today you would never know that I was in a wheelchair for eight months and am still learning how to walk. My legs can't yet support me for long periods of time. I'm okay for about an hour, but then I have to rest or I know my legs will start to get weak. I am doing physical therapy three times a week and doing home exercises seven days a week. Through that I can tell I am getting a little stronger and my walk is getting smoother and less noticeably awkward. My friends all said when I got home I walked like Frankenstein, totally straight legged. When I first got home I used my calipers, walker, and cane but I told myself I didn't want to rely on using these things so I slowly eliminated each one. I walked really slowly making sure I was doing everything correctly, but I've gotten to where I am today by doing so. I still have to concentrate really hard whenever I take a step, but hey it's a step!

I am still sweating, gross! Even though the weather here is nothing like it was in India I can still find I am sweating when I work out or when I am wearing to many layers. I hate sweat, but it is such a miracle that I am sweating. I am so thankful to actually have a reason to wear deodorant now! :)

My brain isn't functioning at it's full potential yet, but I know it will get there sometime. I haven't noticed big changes yet, but I think there are very very subtle differences. I have been working on a project for the past couple weeks and I think my brain has been able to keep track of it a little bit better than it would have four months ago. Hopefully I will keep seeing these changes and at some point in time return to school full time.

My sleeping patterns haven't changed much since we left, but getting that extra hour or so every night has been a really good thing. It always feels better to tell someone yeah I'm getting five hours now instead of four. I haven't been able to tell a physical or mental difference, other than losing an hour out of my day. My stem cells need the extra hour and hopefully I will start seeing the benefits from it soon.

I don't know how many of you check my blog anymore, but for those of you who do, Thank you and I wanted to give you all an update on how I am doing. We are planning to return to India for our second trip end of March or beginning of April.