Migraine

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.

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 ...

Patients

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.

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 ...

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.

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.