Thursday, November 26, 2009

We Are Home and My Girl Can WALK!












Monica walking out of airport to greet family & friends. Mitch (18), Monica (15) and Kevin (17)

Where do I begin? After a considerable amount of deliberation, Monica and I have returned home. I was torn because I FINALLY found a place that offered Monica not only the possibility of healing, but a place that was actually healing her. My mission has been to do anything and everything to get her well and now that I found the place I didn't want to leave. Monica was torn because she loved the staff and patients at NuTech along with watching herself make progress in her ability to walk, however she really missed her family, friends and pets. With stem cell therapy your body reaches a point where your "cup" is full and it is time to go home and let the cells have time to do their work. Our cup was full. We will again return in March for a six week "booster" and then probably one or two more times.

Monica's stem cells are the miracle inside repairing, regenerating, and replenishing everything in her body to fight the Lyme disease and her own disease. Now at home she has to treat herself special because the stem cells need to grow and develop based on how she trains and nutures them. Progress will continue to happen over time while we are home.

Monica made incredible improvements in a remarkably short period of time:

1. She now sweats - she is not particularly thrilled with this - but I sure am!

2. She has begun to sleep longer. I would always try to have our lights out, computer off, and her iPod music on really "low" (her low and my low are very different even with my ear plugs in) at midnight. I would pass out immediately and we would wake up at 9:40am everyday by Ajo's smiling face (the male nurse). I was getting great sleep which made me think she was sleeping just as long. She absolutely would disagree with me on how long she slept, but at least the lights were out!

3. She moves in her bed. Now this may not seem like a big deal, but with no sensory input when the room is dark and her eyes are closed she never moved in her bed. The position she fell asleep in was exactly the same when she woke up. A couple weeks into therapy I realized that she was moving in her sleep!

4. She is able to crawl forward and backwards. She scooted around the house on her butt for the past seven months (with her feet in front so her pants wouldn't be pulled off). We have a two story home and her room is upstairs in the furthest corner. Monica was not willing to move to the downstairs bedroom and not willing to have any accommodations made to her living space. In the bathroom we did take the glass shower door off and put up a curtain, but that was the only change she was agreeable to. Watching her in physio get stronger and stronger and finally be able to balance herself and crawl on the physio bed five motions forward and then five motions backwards was amazing!

5. She is stronger physically - balance, coordination, strength, stamina. Monica's upper body strength has always impressed me. She was able to effortlessly transfer her body weight anywhere. She would lift her body up, holding onto the handles in my Suburban truck, and place her body in the seat of the truck. However, I felt an urgency to get to India because my fear was that she would not be able to use her arms much longer due to the progression of her illness. Well to see Monica work so hard at absolutely everything they asked of her was so rewarding to me. She became stronger in all areas and fearless in trying to do the exercises. Her balance originally was awful. She easily tipped and if you watched her sit in a position she would slowly tip over if she had to hold it. Now her core is stronger and able to support her better!

6. MONICA CAN WALK! Yippppeeeee Skiiippppppeeee!!! The most amazing part of this whole journey has been to see the work, discipline, focus and dedication Monica has put in to be able to walk out of NuTech. As you all know she has been working tirelessly to be able to stand and then walk in calipers. She was able to go from one huge caliper - metal going all the way up the hips and then a large plastic piece that went around the waist to metal knee braces and plastic ankle braces. She planned on going home in the knee braces.

During our exit interview (the afternoon before we left), Dr. Shroff told Monica that she expected her to be able to walk without calipers on her own holding onto someone by December 15th and then by Christmas she should be walking on her own. Sitting in that interview was fun because I knew that Monica wanted to see if she could walk on her own right then without any support. Monica had never practiced on her own let alone stand without any support. However, once she decided she could do it I just knew she could. She is remarkable. Well, Dr. Shroff said she would absolutely help her and ordered a walker to be brought to her office so that Monica could try. By the time the walker arrived in her office (which was immediately) Monica was up standing all by herself. Dr. Shroff taught her how to use the walker and Monica took off. Within fifteen minutes Monica had gone from not being able to stand without support devices to walking without anyone or anything helping her! Dr. Shroff excitedly called down to physio to not let anyone leave because Monica wanted to surprise everyone. It was such a thrilling moment, as her mother, to watch her WALK across the room all by herself so proudly. Everyone was cheering and crying. A very emotional moment for Monica, myself, Dr. Shroff and everyone else who has been a part of getting her better.

There have been some side affects from the treatment: her vision is blurrier and her throat is more constricted. Time and stem cells should heal these. We all have to assume that so much more of Monica's body has been healing during this treatment. She has not regained any of her sensory yet. The doctors are hopeful that this will occur sometime in the next few months as her nerves continue to repair themselves. I can barely stand it waiting to see what she feels first. Obviously she deserves to eat, smell, feel some pleasurable sensation first and that is what I pray for.

We arrived home (without seizures or the "claws" on the airplane - that shows she is healing) using the wheelchair. Dr. Shroff ordered a walker and cane for us that day so we would have them to use to see our family at the airport. With a wheelchair, the airport always has an individual assigned to you to push the chair around. Our gentleman was wonderful. I told him our plan and he got us all ready. We got Monica up and walking down the hall using her walker where family can see you on a monitor before you walk out the gate. You could hear them cheering. Fifteen people greeted her screaming.

Monica was really slow walking out of the airport that day. Today, a week later, she is not using the walker at all, uses the cane for long distances, and usually doesn't have anything to help her but her own two legs! She is walking into stores on her own, walking around town on her own, and has even gone to the beach and walked in the sand on her own. I am so excited that she has gained the confidence again that her body will support her and allow her to go where she wants, when she wants.

We will continue to update our blog to let you know how Monica is doing. I am so excited for the future. EVERYTHING feels different now. I believe we turned a corner and only good things are going to happen from now on. There is no looking back, just forward to a better and healthier new life for my girl.

Friday, November 13, 2009

Human Embryonic Stem Cell Information

I realized that most of you probably do not know what human embryonic stem cell therapy is and why it is so exciting. I have been doing research, asking the doctors here at NuTech to clarify details, and interviewing patients for this information. I am not a doctor. I am a mom interested in how the embryonic stem cells can help my child heal. Therefore, let me share what little I know.

Human Embryonic Stem Cells (HESC)
All human bodies have the ability to repair and regenerate to varying degrees in various organs. During a person's lifetime, the body is able to maintain a balance and as age advances, the ability becomes diminished. If the body become diseased, either by its own malfunctions or by viruses or bacteria (which are often the trigger for an autoimmune disease) it leads to depletion of the body's cells and often incapacitating, incurable or terminal conditions. For many of these disorders medication is given to control and / or cure the symptoms, but there is no true solution. Human embryonic stem cells (HESC) can supplement the missing or dwindling cells and replenish or regenerate the malfunctioning parts of the body.

What are stem cells and why are they important?
Stem cells are considered the body's master cells. They can differentiate into any number of types of specialized cells such as muscles, nerves, organs, bone, blood and so on. These properties make stem cells different from the body's other mature cells which are committed to their assigned function. For example, a skin cell can only divide and generate new skin cells. So why are embryonic stem cells so amazing? They are able to become any type of cell because of their "plasticity" (the ability to change permanently, as opposed to elasticity, meaning to change temporarily and then revert back). This makes embryonic stem cells essential for renewing and repairing the body. They are formed at conception and specialize later to become various tissues of the growing embryo. After birth, the body retains the stem cell reserves in various bones and organs. These reserves are limited and when depleted, the body begins to succumb to disease, disorders, and aging. Stem cell therapy offers the potential to stop the cascading progression and to replenish the reserves and fight a wide variety of injuries, diseases and disorders.

What makes Dr. Geeta Shroff, an infertility expert, at NuTech Mediworld in India different?
There are stem cell options around the world. To date, NuTech Mediworld is one of the best known stem cell centers. Dr. Shroff, a physician trained in in vitro fertilization, has been using HESCs to treat incurable or terminal diseases. Dr. Shroff's process is different than any other options because she has developed the technology to create, by the use of a single donated embryo, an infinite number of stem cell lines eliminating the ethical issue of destroying embryos for research and treatment. However, this one special embryo life now is powerful because it has given life to hundreds of individuals with incurable and terminal conditions. Dr. Shroff has been able to grow embryonic stem cells without the use of any animal products. And she has the ability to freeze and thaw her cells to allow storage and transport.

During her laboratory research and with full consent, she used a surplus embryo from an IV donor who underwent a barrage of tests including a complex medical and genetic history. Theoretically, this one embryo can treat the entire human population. Every day we hear about other treatments around the globe using stem cells (fetal, umbilical cord, adult, rats, mice, etc.), but Dr. Shroff has pure human embryonic stem cell lines that do not show any immune rejection in the body. Embryonic stem cells do not have any antigenic proteins on their surface and thus do not require immunosuppressant drugs. This unique cell culture methodology makes the HESCs universally acceptable without the need for cross-matching, irrespective of gender, age, or race. To date, there have been no side effects reported in over nine years of therapeutic usage. This therapy is being used to clinically treat patients suffering from various conditions all presently categorized as incurable or terminal: spinal cord injury, diabetes, multiple sclerosis, Parkinson's disease, cardiac conditions, and many more.

What is the difference between India offering HESCs and other countries?
Dr. Shroff's type of work is governed by the Indian Council of Medical Research, which sets forth guidelines for stem cell research. Under Indian law doctors may treat a condition or disorder that is considered incurable or terminal with novel procedures. Dr. Shroff is not bound by many of restrictive regulations and policies that are present in other countries (it is illegal in the US), compelling patients to travel from all over the world for this revolutionary treatment. During our treatment we have met people from Egypt, Iceland, Brazil, New Zealand, Australia, Argentina, and the United States.

What makes HESCs better than other stem cells?
When a sperm fertilizes an egg, it becomes what is known as a zygote. Many scientists view the zygote as the ultimate stem cell because it can develop not only into an embryo, but also the surrounding tissues, such as the placenta. Because the zygote has the highest degree of plasticity (ability to permanently change), it is referred to as a "totipotent" stem cell. Totipotent stem cells have the potential to generate all the cells and tissues that make up an embryo and that support its development in utero. The zygote begins to divide thirty hours after an egg fertilized and by the fifth to seventh day, the cells form a blastocyst. Dr. Shroff harvest them at 24 to 48 hours - pre-blastocyst.

The embryonic stem cell is defined by its origin - that is from one of the earliest stages of the development of the embryo, called the blastocyst. Specifically, embryonic stem cells are derived from the inner cell mass within the blastocyst at a stage before it would implant in the uterine wall. The size of this blastocyst (embryo) is about 0.1-mm across or smaller than the size of a period at the end of this sentence. These stem cells are somewhat less plastic and more specialized than a zygote. Those on the outer surface of the blastocyst develop into the placenta and other tissues that surround the fetus, while those inside - referred to as embryonic stem cells - become the cells of all the fetal organs and tissues.

The embryonic stem cell can self-replicate and is pluripotent. Pluripotent embryonic stem cells originate as inner mass cells within a blastocyst. Such stem cells can differentiate into any of the more than 200 types of cells in the human body. Most scientists use the term pluripotent to describe stem cells that can give rise to cells derived from all three embryonic germ layers - ectoderm, mesoderm, and endoderm. All of the many different kinds of specialized cells that make up the body are derived from one of these three embryonic germ layers.

What is HESC therapy?
HESC therapy is given to patients who commit to either a four, eight or twelve week period depending on their health condition. During this time the patient is given stem cell injections into specific targeted areas: intravenous, intramuscular, and spinal procedures. Dr. Shroff starts with a low dose of HESCs at the beginning of therapy and increases the dosage over time per the patient's needs. Along with receiving HESCs, the patient receives intense physiotherapy, occupational therapy (based on the patient's needs), and participates in yoga. The combination of these helps stimulate the HESCs to go to locations where the body needs them most. Additionally, patients need to realize the importance of having a positive attitude, believing they can make their body create the changes needed, having a healthy commitment to treating their mind, body and spirit like a treasure to heal their body, working hard at making an effort to exercise, eat nutritiously, think positive, and nurture their stem cells. Progress happens over time and not immediately.

Making the Tough Decisions

One of the best and riskiest decisions of my entire life was to take Monica to India. It was a difficult one because not only does it impact my family financially (it is all cash, very expensive, and we need to return several times over the next year or two), but we had to leave behind Kevin a senior in high school (who wants his sister to get better, but the trade off is that his mom and sister left home for a couple of months) and Lance - luckily Mitch started his freshman year of college two days before we left so he is distracted and consumed by his new lifestyle.

Personally, I believe that I needed to try absolutely everything possible in the world available - regardless of costs - to get my girl well. Money is just money. I learned a very valuable lesson growing up that money cannot buy you health or happiness. Sure it can make life more comfortable or give you options, but it cannot buy the most important things you need - hope, love, courage, health, happiness, etc. Money makes it possible to try everything, but if you don't find the right people or places it doesn't matter how much you have.

I have known several people who have died because they could not find a place to go to heal. They could not find a place that could stop the progression of their disease. They could not find the most brilliant people, medical equipment and medicine available to mankind at that moment when they needed it. They could not find answers because the medical community didn't have answers. I now know we know so very little about how our bodies work. Especially if you have a condition that is now called "Monica's Disease." No doctor so far around the world has been able to name her disease or recognize her symptoms. It is truly a miracle that our bodies are able to work as well as they do. Be grateful that yours does.

I have learned an incredible amount about stem cells and have witnessed the miracles they can create in people's bodies clinically. Stem cells are going to be the new wave of medicine in the future. They will be available in our pharmacies and used as a first line of treatment for injuries or diseases or disorders I believe in my lifetime. Monica has become a pioneer being treated with human embryonic stem cells. She is the youngest person in the world to receive human embryonic stem cell treatment from NuTech Mediworld - one of the world's leading stem cell centers - outside of India. NuTech Mediworld does have an outpatient clinic for children.

We did not have much hope before we arrived. In fact - I believe she would have died had we not come. I had to make the tough decisions and be willing to try something risky and experimental. Monica had to be willing, brave and have the courage, determination and dedication to try everything possible to heal. Well, it has been one of the best decisions ever. Monica continues to get better and better and we now believe it is possible for her to heal.

I cannot begin to express my gratitude to all of you for your continued love and support throughout this journey.

Thursday, November 12, 2009

Expectations

The treatment I have been doing for the past two months was our last resort. There was honestly nothing left to try back home. I am in the same situation as almost everyone here I think. We are all at our last resort here, we've tried everything and keep getting the same answers. The spinal cord patients are told they are never going to walk again, Lyme patients are pretty much told there isn't a way to kill it completely, ALS patients are given a range of years they have left to live, MS there's no way to stop it, and so many more along those lines. Yet none of us will give up and that is exactly how we ended up at such an amazing place with such amazing doctors and people supporting us. It's been really hard to leave everything behind to come here, but it was absolutely worth it. For me so many treatments have failed in the past that I have learned to keep my attitude positive towards something working, but bracing myself for the worst. Before coming here I didn't really have expectations, I was hoping for a lot, but I had no expectation to go home walking or feeling or better. Everyone who has been here in the past has seen amazing results which gives you hope and encourages expectations which are much bigger than reality. My Mom came here with the hope that I will go home with ONE change, it didn't matter what, anything. One change would prove to us that I was done progressing and I could then move forward and start getting better. Other patients here came with the expectations that they would be able to walk out of here if they are wheelchair bound (this is an example it's not true I'm just trying to give you an idea).
If you have the mindset that you will be walking out of here you will miss all the little things that are happening. Towards the end of your trip you will feel like you didn't accomplish much because you didn't achieve the one goal you came here for. When every one else who has been here with you can see incredible improvement in strength and balance and everything else. If you are to come and do this treatment, you need to come with an open mind and really pay attention to everything that is going on in your body and even if it doesn't meet your goal in the first trip maybe in the second or when you are back home it will happen. This whole entire post probably sounds like I'm blabbing on and on, but my point is this trip has gone beyond all of our expectations and has given us a new found hope. You need to come hoping for the best and not losing that goal, but also making sure you don't get caught up in more more more.

Saturday, November 7, 2009

Ping To The Pong

Gabe and I were hanging out downstairs one night while his dad was out picking up his wife from the airport when we came across four ping pong paddles, three ping pong balls, and a net in a little cupboard. Matthew's wife's plane was delayed about and hour and a half so we were kind of watching over/hanging out with Gabe while his dad was out. After we had been through all the games they have here (chess, scrabble, cards, dominoes, etc.) we found the ping pong set and decided that we were going to play no matter what. Since Gabe is a quadriplegic he can't move his legs, and his arms he can lift up and down a little bit. We set it all up and started playing. Since Gabe can't grip the paddle, we strapped a paddle in each hand using his gloves. By the end of that night (around 1AM or so) we could hold a rally of six. For the next week or so we didn't play often, but we just started playing with about seven other patients and it's been SUPER fun. We all start laughing and can't stop for hours. We are now playing doubles because we have so many people. The doctors find it to be one of the funniest things ever to watch. It's truly amazing to watch a quadriplegic play ping pong, especially in doubles. It's so fun and gets everyone involved in it. I'm sure going to miss not playing and hanging out with everyone at night. video