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.

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.

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.

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.

Green Park

We live in an area called Green Park. It is such a small area compared to the rest of Delhi. It takes us about 20 minutes to get to the heart of the city from the hospital depending upon the time of day with traffic. I have really liked living in Green Park. The hospital is on a very busy street but you have access to a shopping area (two blocks long with stores on just one side) that is about a five minute walk. You can walk to Deer Park which is again about ten minutes from here. This park is quiet (the first place I could actually hear birds chirping), green with plants and trees - no grass, and has a fenced in section of deer - they look like bambi with white dots, but many have antlers with their velvet still on. You can also walk to another area about ten minutes away that has a quaint feel to it with cobble stones and then end up at some spectacular ruins.

The hospital has an outdoor lift that takes patients out of the building. Once outside there is a small space for parking in front of the hospital. If we want to play cricket we have figured out how to get most of the cars moved out of our way. Green Park is located close to many other hospitals and laboratories. Just walking for five minutes to Green Park to shop is an experience in itself every single day. The vehicles drive on the opposite side of the road than in America. It is so hard to remember that when you are walking. You have to cross the street at two places to get on the side of the shops. You would think that is a breeze but in fact it is a challenge. The first few times you are scared, but after that you just become determined and hold your ground for the opportunity to just go and expect them to stop or swerve. You have to feel like you are a vehicle yourself to create the space and have a command of presence for them to believe you are NOT going to move. It is no problem now because I get it, but those first few steps were a challenge in courage.

On our walk to Green Park you see bicycles used for transporting everything under the sun - regular bikes and ones that pull a wooden small trailer. They transport blankets, trash, furniture, laundry, hospital supplies on a regular bike (three cases of 1 liter bottles of water, boxed milk and other supplies), pipes, bricks, sticks, wash machines, brooms, etc. You see women in their beautiful bright saris doing manual labor carrying bricks, grain, sand, groceries on their heads, or raking rocks and digging trenches. The saris are beautiful and look like splashes of butterflies along the brown roads. There is a man on one corner that irons clothes (coal irons) on the street under a tarp and another woman in the street next to the shops that does the same. There is a man that gives men a razor shave outside in front of a mirror tacked to a fence. There are several people that set up on the street to make food out of one bowl and coal burner.

The shops along that strip really can provide anything you need. They are about 20 feet by 40 feet with an aisle of merchandise in the middle. You can barely walk around and pick out what you want inside. The places are stuffed with merchandise and some times you need to ask the grocery "boys" (really men) to find what you want hidden away. Everyone is very helpful. There is an amazing amount of American food here just in Green Park if you look hard enough. Not your favorites or comfort food necessarily but many, many familiar labels. Everything is in English and they write in English, but Hindi is the language most speak. You can tell who has been educated because they speak perfect English. Some of the children talk to you and are so proud that they can converse with you in English. Education is very, very important and taken seriously. You can see the pride in the children's' faces when they realize they can speak to someone white. There is a toy store, 7 little grocery stores, three salons, two magazine stores, two health stores, several phone stores, a camera shop, two restaurants and two coffee shops - all of them very small stores. The only difficulty with the area is that they are not accessible. You need several people to help lift Monica up onto the area (18" curbs and steps) and then the pavement is all cracked. We do it, but it's just not easy. She cannot fit into any store either. It's not fun being left outside while I go in to shop for groceries or plastic containers at the toy store. I go now by myself unless I bribe her with ice cream and then she will make the trip.

Actually for the first time, I told her I'd get her ice cream if she wore her braces to get up the steps and see the ice cream to pick out. I pushed her in the chair and she stood up and moved straight legged in the calipers up the huge curb and stairs and then she waddled up three more stairs to be in the shop and look at the ice cream. She was mad as a hornet but did it. Bribery works wonders. She is NOT comfortable in her calipers unless she is in physio. She looks like she would be but without them her legs do not support her yet at all. Her confidence level with the braces hasn't caught up with what she is capable of doing. Her knees still don't support, but that should come in time. The rest of her body is remarkably strong.

I cannot begin to understand psychologically how difficult it must be, because you cannot feel anything, to just put yourself out there with confidence. She is incredibly stubborn and fearless which is why she is still alive. Monica continues to amaze me everyday with her spirit, joyfulness and the willingness to rise up to any occasion and try everything. She never takes advantage of her situation and wants to get the absolute most out of every day!

Monica is helping me put together a slide show of Green Park. It should be up in a couple of days.

Delhi

To get perspective of where we are living you need to understand Delhi a little better. The city is one of the oldest continually inhabited cities in the world with a history dating back to 1,000 BC. One of the earliest structures that exists is the 1,600 year old Iron Pillar at Qutb Minar (at the time we saw this we couldn't figure out why everyone was so excited to see a pole! The pole also has never rusted.). There is Very Old Delhi, Old Delhi, and New Delhi. The New Delhi was designed to house the British administration in 1931. There are close to 800 politicians in Delhi when Parliament is in session and India is the world's largest democracy. Delhi is the largest city in India with a population approaching 22 million. The country has over one billion people living in it.

A quarter of the world's destitute live in India. Over 380 million Indians live below the poverty line, subsisting on less than US1$ a day and almost 89% of the total population live on under US$2 a day. Conversely, as India's economy grows millionaires are being created at a record rate and there are now over 100,000. This is a 20% increase over last year. Bridging the gap between the 'two' India's is perhaps the greatest challenge facing the country today - and for a visitor to come to terms with. There is a rapidly developing middle class, but you have to be sensitive to the fact that wages are low and even a middle-class family is likely living on less than US$1,000 a month.

Just watching how the hospital operates I assume there are extremes in what wages are being paid to people. In general I know that the sisters (nurses) were brought in from another state to work here and are living in a hostel together, the ward boys are hard laborers and come from the mountains and do not have hot water where they live, and then our doctors and managers have drivers to take them around. The influences of Hinduism and the tradition of the caste system have created a culture that emphasizes established hierarchical relationships. Indians are always conscious of social order and their status relative to other people, be they family, friends, or strangers. All relationships involve hierarchies. In schools, teachers are viewed as the source of all knowledge. The patriarch, usually the father, is considered the leader of the family. The boss is seen as the source of ultimate responsibility in business.

I can see this applied in my little time observing people in India. Dr. Shroff is absolutely the boss and takes precedence over everything. When she asks for something it is done immediately. People take her phone calls when they are in a meeting. Dr. Sudeep has a phone dedicated to just her. He has it with him at all times and will answer it always immediately no matter what is going on. Dr. Shroff and Dr. Ashish realized on Thursday that Monica was having cognitive issues and was an A+ student and in advanced classes before she dropped out of school (they have been very focused on getting her to walk and trying to get any type of sensory back and didn't fully realize how impacted her quality of life is with not going to school), that Dr. Shroff walked away from us, went into talk to the director of the children's department and she came back and told us that Monica would be starting that day meeting with him from 12:00pm to 12:40pm everyday. During his evaluation of Monica he answered his phone (of course I thought he was extremely rude, as I have every time someone answers their phone in front of me mid-conversation) and started talking to Dr. Shroff. After he evaluated Monica (he stated that she was extremely intelligent and has a superb working memory (short term memory), but she has an information processing deficit. He now not only sees her alone daily, but is dedicating extra time to her throughout the day and asked her to come to his department whenever she has free time.

I continue to be amazed at the support system provided to us if the doctor believes we need additional support. They will provide you the resources if they believe your body needs them - never before. They really pay attention to what the patient's body is saying and what they observe collectively. They scientifically make their decisions and are constantly weighing the trade offs. I wanted more occupational therapy for Monica and couldn't understand why I couldn't hire our therapist outside the hospital time. Well, they just didn't believe that Monica needed more than two days a week. There was not enough proof that it was worth the investment. It is important and critical to do, but not everyday. I love that they are very clear cut in priorities. It is such a pleasure working with people that are decisive and invested in the outcome - my girl's quality of life!