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 :)