Jason's Blog

Here is a link to Jason's blog while we are here in China. I think you'll enjoy his prospective and his writing abilities. "Thank you" is simply not enough appreciation for this young man's commitment and help while I've been here. Jason has also been helpful to the other patients and staff members who know him by name within a minute of meeting him. Thanks Dude! ajasoninchina.blogspot.com

March 30 - Treatment No. 3

I've been under the weather with a slight cold accompanied with a sore throat for the past four days now. This is not the best circumstances for baby stem cells to develop so they've had me on traditional Chinese medicines which includes a small vile of some pretty "vile" tasting liquid four times a day, as well as some sort of pills. I have no idea what's in either of these products, but they seem to be helping. Jason was able to round up some vitamin C so I've added that to the mix too.

Today I was given my third bag of stem cells via IV. On Friday they will return my cultivated bone marrow via IV. Then next Wednesday, I'll be put under general anesthesia and given two bags of stem cells via site injections into my thighs, calfs, forearms and biceps. This will complete all the transfusions I've signed up for. After that its workout, workout, workout. I expect to increase my physical therapy from two to three hours a day.

Results: So far not much at all, except maybe a slightly faster walking gait. But I've only just now had my third (of six) treatment, and it's way too soon to tell. One of the Americans who works here told me muscle damage takes longer than other types of treatment to see results because you have to work and develop the muscles. But the new building blocks will be in place by the time I leave here, so the rest will be up to me. Cool! Bring it on!!

March 28 Physical Therapy

Here are some shots of me doing physical therapy. I do this five days a week for about two hours. On my days off, or when my legs feel tight, I also use an stationary bike for about 20 minutes.

Standing apparatus - 30-40 minutes/day.

Arm and shoulder cuff stretches. This right side (weaker and more atrophied side) workout hurts like hell!

Boxing exercise.

Hip lifts. "No Mercy" James makes me do 20 of these things! I am exhausted by the time I'm through, but I'm doing more than I started with (10).

Leg stretches and leg push.

Walking straight. James is pushing down on my hips as I walk.

March 25, 2009

Bone marrow treatment went much better and easier than I expected. I was a bit "high" when I dictated the following notes to Jason right after I was returned to my room, so my apologoies if they don't quite connect.

For the bone marrow treatment I was shaved and prepped, then wheeled down to the third floor. I was then wheeled into an operating room and transferred from my hosptial bed to the surgical table. When I arrived in the surgery room there were at least five people already in there, all of them were chattering quickly at the same time in Chinese. Very noisy. They put me on my right side and made me very comfortable with blankets. Then I was hooked up to a heart monitor and an automatic blood pressure cuff. Next an IV was inserted into the back of my right hand, after removing yesterday's stem cell IV from my left hand. They put an oxygen mask over my face and asked me several times if I was comfortable. They then washed my bum and back with a very cold solution several times and kept pressing on the knob of my hip bone located just below on left kidney. Next, the anesthesia was injected via the IV, and I slowly drifted off to sleep. Next thing I knew I awoke to see my attending physican, Dr. Mary, who asked me if I was comfortable. I spent about 10 minutes in the recovery room then was wheeled back up to a my room, where I was monitored for approximately ten minutes. No pain whatsoever, and they were all so conscientious about my comfort, it was very important to them. Their anesthesia is so good! Makes you feel like “Oh yeah, nothing in the world will affect me.” I entered the operating room at 8:02 and left at 9:00 am, where I was told I could eat and drink something. I am now required to stay in bed for 24 hours, and cannot shower for three days.

They extracted 200 milliliters of bone marrow from my system which will be cultivated and returned to my system via IV in 13 days. I thought a lumbar puncture would be necessary, but was told for MD patients, no lumbar punctures are preformed.

Here's a shot of the hospital from the street. We are on the very top floor.

Signing Off For a Couple of Days

Its 3:00 pm, Monday, March 23 here in China as I write this. I'll be off the air for a couple of days beginning tomorrow as my bone marrow treatment begins. After they extract the marrow, I will be required to lay still as much as possible for 24 hours. I am told by another patient that the procedure is really not that bad, but it will wear ya out.
Just had my second IV of stem cells a few minutes ago, and expect I'll be bouncing off the walls hyper here in about an hour - just like the last time. However, Jason and I discovered some cool exercise equipment so we're going bicycling as soon as it hits.
Here is a still photo of my electronic accupuncture. I wanted to really give you a video, but uploading videos to Blogspot is the worst. You could have seen all the wires and jumping contractions! They started with 3 needles in each arm, and 3 in each leg. Today they upped that to a total of 24!

Hangzhou Excursion

Jason and I got some time today to take a trip to Westlake, in western Hangzhou with Jack the Taxi Driver. Driving anywhere in this city is a trip in itself, but we made the 40 minute trip without incident.




It's not the foggy morning it appears. The "fog" effect is actually air pollution.


We also spent time shopping at the Silk Market, a strip of open air shops nearly a mile long. The Silk Market experience was very cool! Lots of haggling (by Jack) with the shop owners produced $2.00 (US) silk ties, silk shirts for less than $15 (US), and others items at unbeliveable prices.













Jack took us to an excellent cafe called The Cappucccino Cafe where we enjoyed Green Tea Cake and Blueberry Cheese Cake. Jason finnaly got a true caffine fix!
Yummmm!!

New Treatment Protocol - Stem Cells Day 1

Here is the first stem cell packet, given to me on March 18 via IV. The most immediate sensation was very twitchy legs, like I had energy to spare. Jason and I had to take a walk around the ward about 3 hours after the treatment. My legs twitched most of the night, but I finally got some sleep.

This morning, my gait was noticeably faster, and I was looking forward to the two hour daily physical therapy with "No Mercy James," my 26 year-old theraptist.

My protocol has changed a bit. The doctors say for muscular dystrophy patients, lumbar injections will not work as well as site injections into the muscle groups. They have not told me when yet when the site injections will begin, but the IVs of stem cells will be weekly. Also, for about 40 minutes each day I have acupuncture treatment. The Chinese use a needle about twice the length and girth of US needles for this. They push them into the muscle then hook them up to an electrical stimulator. Yeah, I know, sounds painful, and it is, a little, but that's the cost so I'll pay it. After acupuncture they hook me up for another 40 minutes to a TENS machine and send electrical current through my legs and arms simulating the muscles again, but there are no needles involved. Its actually relaxing.

Next Tuesday will be the bone marrow extraction. I'll be completely put under for this procedure. The next day will be another IV of stem cells.

Chinese Takeout

Jason and I have received some questions about the food here. You can find just about everything here you can in the States, albeit it with a twist. There is no "diet" anything; it is called "light," and you'll confuse the locals with that term. KFC, Pizza Hut and McDonalds are very popular, but on the expensive side, compared to the Chinese food Jason and I got for 22 RMB (about $3.25).

This is steamed riced with egg, pork filled dumplings in a broth, and Chinese eggplant in soy sauce. It was SO GOOD! We are definitely eating Chinese as much as possible.

Yesterday, Jason took a trip with Sam the Taxi Driver (one of our English speaking translators) to the Market Place about two blocks from the hospital. He found some snacks for our room and bottles of soda and water for our little fridge.

I expect we'll eat well here, and will keep posting photos of these delicious dishes now and again.

In Memory

It is with a heavy heart I type this post today. I learned that my brother Craig, died while we were in flight this past Sunday. Craig was 47, and had dealt with the ravages of muscular dystrophy since he was very young. Of us four kids, his case was second in severity. In late February he came down with a severe case of pneumonia. If not for the insistence of his wonderful care provider, Jay Graham, he would never have made it that far. After nine days in ICU, the doctors were able to replace his ventilator with a breathing tube and he spoke freely exclaiming “tell everyone I’m alive”! But even though the fluid was off his lung, the damage, coupled with a weakened body, was already done. He eventually was moved out of ICU, where I got a good two hours’ talk before I left for China. He was smiling and happy to hear he was going home the next day. I will miss my brother, and wish him health and happiness now that he has gone to be with Mom and Scott. Take care, Buddy, and watch over me will ya?

Some Photos

Here is Beijing airport, Terminal 3. This place was HUGE!, and it was just one of several terminals. We had to take a tram ride - about 3 minutes - to get here. The floors shined like glass.

Our room. #7, 20th Floor

View from our room.

First Day Part II

Lots of tests today. First blood, then a brief physical exam from Dr. Mary to check my heart and muscles (or lack thereof!). Next it was into a cramped elevator to the second floor for a lung capacity test with lots of locals stopping in the doorway to see a white guy turn red. That was tiring, but I guess I did alright. Then I was taken to another floor for x-rays of my chest. All of this is important to ensure I can take anaesthesia okay during my bone marrow treatment. I very long needle will be shoved into my hip to extract the bone marrow, so they need to put me under for the procedure - alright by me, guys. Lastly, I spent an hour being evaluated in physical therapy, and filmed by a nurse all the while. Its a "before" and "after" thing from what I understand. The evaluation included leg lifts, arm lifts, sitting up, neck strength, and measurements of arms, legs and bending ability. Next came the stair climbing. I chose the low rising stairs, and climbed all five of them easily, stepping down the steeper stairs on the way down. Then the news that my stomach would be the first thing we work on beginning tomorrow bright and early. After that I go to acupuncture for "recovery"?! More later.

First Day

We awoke Monday morning in Hangzhou after a restful night's sleep to the typical sounds of car horns honking and birds chirping. An early view out the over-sized window shows a city of great contrast. Old meets new meets dilapidated, mixed with neat backyard gardens in perfectly straight seeded rows everywhere you turn. The standard is living is low, so most plant gardens to subsidize their family meals with fresh vegetables. We can see temples peaking out from mountain tops - well, we could, now the pollution makes them invisible.

My morning started with a shower in a walk-in type room attached to the bathroom. The floor is covered with non-slip material so there is no real safety issue there. The toilet is fairly low, but it has grab bars all around it which help. After a couples of tries, I was able to get up fine on my own.

A nurse came by shortly after my shower to collect my "samples" and do a blood draw after my 12 hour fast. No, Laurie, I did not pass out!! Later this morning will be a complete physical and a chest x-ray.

Now, we're ready for breakfast!

We've Arrived!

It's Sunday, March 15, noon time as I write this. Nealry 25 hours, and four airports later we're here! I'm taveling with my girlfriend Laurie's son-in-law, Jason, who has been a great help getting me out of wheelchairs and airplane seats, fetching liquids to quench pressurized cabin thirst and snacks between stops. Beike Biotech requires you bring a caregiver or hire one once you get here. I'm glad I brought someone I know and can trust. There's no way I could have made it here otherwise. The flights were uneventful - just the way you want them. Everything was on time and with too much turbulance. Air China was cramped for the 13 hour leg, but our row-mate Peter, made it interesting. Peter originated from Taiwan, and eventually made his way to California, where he and his family sucessfully embraced the American Way, himself eventually becoming an American citizen. Peter works in the luxury car import/export, and was making yet another trip to China. He told us how to make friends in China by passing out cigarettes to the men, and beauty products for the women.



Five minutes after we arrived in our room, the staff was taking my tempature and blood pressure. It's Sunday, so that was about it. Tomorrow, after I fast, they'll start a blood draw and begin testing it for a match.



Our room is small with one single-sized hospital bed, and a queen sized bed for Jason. It's on the 20th floor with a nice bathroom and shower. The view is of a very hazy skyline with modren buildings mixed with ancient, and a garden in every backyard. Horns honk constantly, more of another form of foot pedal than the American version of flipping you the finger.



Ok. I'm beat and need a nap









We were met at the Hangzhou airport by a Beike Biotech staff member, who wisked us back to Hangzhou Hospital.

Here We Go!

March 11, 2009:

Welcome to my stem cell treatment blog. I will try to keep the blog updated as often as possible. You may leave comments here or email me at russkleve@verizon.net.

I want to thank especially Kelly Clark and Mark O’Donnell for helping to make this a reality. I could not ask for two finer people in my life. They are fine attorneys, employers, and friends who have supported in so many ways for the past 16+ years! And of course the awesome staff at the law firm of O’Donnell Clark & Crew LLP - I love you guys!!

I also want to thank the person who put me on the road to China. A fellow-FSHD patient from Australia I met a decade ago on an online web board, Claire Anderson. Claire is an amazing woman who has fought the good fight and found the words to express it in her book entitled: Invisible Opponent (www.zeus-publications.com/invisible_opponent.htm). Claire completed an India stem cell treatment program in late-2008, and it she who became my inspiration last September.

Why I’m Here:
I, along with my mother, twin sister, one older and one younger brothers, were all born with Facioscapulohumeral muscular dystrophy ("FSHD" for short). The major symptom of FSHD is the progressive weakening and loss of skeletal muscles. The usual location of these weaknesses at onset is the origin of the name: face (facio), shoulder girdle (scapulo) and upper arms (humeral). Early weaknesses of the muscles of the eye (open and close) and mouth (smile, pucker, whistle) are distinctive for FSHD.

Unlike my siblings, my disability did not really begin to effect me until my late-20’s when my left foot began to turn inward causing me to trip. This is known as foot-drop. Prior to this I was an avid bicyclist, cranking out 50-100 miles a week, rain or shine. However, by the time I was 30 I had traded my touring bike for a stationary bike; by 35 even that was difficult to pedal; by 40 I had given it up altogether. Now, at 48, as can be seen in the video (see below), life’s simple movements are a struggle, although I consider myself extremely lucky when I think about my own family members and what they must deal with every day.

I dedicate this journey to my brother, Scott, severely affected by FSHD in his childhood who passed away in 1995, too young at 38; to my mother who left us in 2002 at the age of 72; my sister Teresa, and my brother Craig, everyone who lives with this disability and those who support and love them.

From the FSH Society’s Webpage (http://www.fshsociety.org/)
It is known that FSHD has been around for five centuries in some families and was first described medically in 1885, but natural history and progression studies are now just beginning. FSHD is the second most prevalent muscular dystrophy affecting adults and the third most prevalent muscular dystrophy of men, women and children. FSHD is one of the nine primary types of muscular dystrophy. Muscular dystrophy in general connotes a genetic, hereditary muscle disease that causes progressive muscle weakness. FSHD is also broadly characterized as a neuromuscular disease (NMD), as muscular dystrophy is a subset of NMD. Muscular dystrophies are alike in that they cause progressive skeletal muscle weakness, defects in the biochemical, physical and structural components of muscle, and the death of muscle cells and tissue. However, researchers believe that the causes of each of the muscular dystrophies are not necessarily the same. In most cases, FSHD muscle involvement starts in the face and slowly progresses to the shoulder and upper arm muscles and then down to the abdominal and foot extensor muscles. Foot drop and foot weakness are early manifestations. Initial signs of FSHD include difficulty reaching above the shoulder level, foot drop, scapular winging and facial weakness. Weakness in the abdominal muscles can cause a protuberant abdomen and lumbar lordosis. The lower abdominal muscles are usually weaker than the upper abdominal muscles. This distribution of weakness is not seen in many other diseases and, therefore, is very specific to FSHD. Although the progression of FSHD is quite variable, it is usually relatively slow. With FSHD, most affected people develop unbalanced (side-to-side) weaknesses. The reason for this asymmetry is unknown. Although not typical, some patients with FSHD have respiratory insufficiency, especially those with severe FSHD.

See how it currently affects me in the videos below.

Nuts & Bolts:
Beikie Bio-Tech (http://www.beikebiotech.com/) is the company I decided on after months of research which included safety, percentage of positive results, number and type of stem cells used, price, length of stay, etc. I get a lot of questions about this, so I put a FAQ section below.

Treatment Protocol: The stem cells are derived from a single umbilical cord provided by a full-term, live birth, Chinese baby (local is fresher!). My specific program will include six injections (10-15 million stem cells each) into my lower spine, as well as a bone marrow treatment which requires the insertion of a long needle into my hip. The marrow is extracted, cultivated and a nerve growth factor is added. Nerve growth factor is taken from the cord serum, and its purpose is to encourage the growth and repair of neurons as well as enhancing the potential of the umbilical stem cells. The bone marrow is then reinjected via the lumbar. But wait, there’s more poking! I’ll be hooked up to an IV drip containing stem cells, and site injections of stem cells into specific muscle groups will also be part of the treatment. I understand that six days a week I’ll be going to some sort of physical therapy, physiotherapy, acupuncture and massage, along with traditional Chinese herbal therapy.

To view blogs from other Beike Bio-Tech patients see: http://www.stemcellschina.com/

Frequently Asked Questions What is a Stem Cell? A stem cell is a cell that can renew itself and become other types of cells in the body. This ability to change into other types of tissue is known as "plasticity".

Umbilical Cord Stem Cells:
We utilize Umbilical Cord Stem Cells known as CD34+, CD133 and Mesenchymal stem cells. CD34+ and CD133 have been shown in numerous studies to be prone towards becoming white matter which is what neural cells and myelin are made of. Mesenchymals have been found to be inclined to be become numerous types of cells including but not limited to chondrocytes (a type of cell critical to tissue renewal particularly cartilage), liver cells, Kidney and neurons. Lab tests have also indicated that when Mesenchymal stem cells are combined with other cells such as CD34+ and CD133 they will boost the process of the transformation of other types of stem cells into becoming what they already have a tendency for such as white matter. These Mesenchymals also appear to be able to conduct repairs in relation to vascular disorders within the brain, ocular areas and throughout the body including but not limited to the heart, kidney and pancreas.

Are stem cell transplants from cord blood safe?
Yes, in fact doctors have been using these types of stem cells for over 40 years. The National institute of Health (NIH) has stated that they have seen no cases of cancer or other health issues in relation to this type of transplant.

How soon will I see results?
Some patients have noticed improvement within 24 hours. Since this is too soon for the cells to have engrafted we believe these immediate results occur from the Neural Growth Factors used during the transplant process.

What are the side effects of a SCT?
The side effects are very minimal. Most common is a slight elevation in temperature lasting 12 to 24 hours. Some patients also experience mild to moderate headaches. Many recipients also experience some level of fatigue for a day or two.

What is the FDA’s position on Umbilical Cord Blood Stem Cells?
The FDA has approved the use of these cells for over 80 conditions. Unfortunately approval for many illnesses and conditions has been slow to come which is why so many are opting to go outside the US for treatment.

Can you please explain what is the Nerve Growth factor and the importance of this in Stem Cell Therapy?
Nerve growth factors in regards to those used in China are taken from the cord serum and encourage the growth and repair of neurons as well as enhancing the potential of the umbilical stem cells which are infused.

Do cord blood cells need to be DNA matched and embryonic/fetal stem cells not?
It is a misconception that embryonic and fetal cells do not have a fingerprint and can change into any type of cell while umbilical stem cells do have fingerprints and can not transform. It is incorrect to say that this leads to rejection issues with umbilical stem cells as it does not. As for references made to such things as "DNA" and/or "fingerprints" neither really applies to either type in their true and pure forms. It isn't DNA variations per se, but surface antigens, often referred to as "markers", that signal "self" from "other". "Self" being the bodies own matter and "other" being a foreign substance. The consensus of studies published in scientific literature is that human umbilical cord stem cells (hUCSCs) provoke little in the way of adverse reactions due to antigenic recognition by the recipient. Meaning that because they lack markers and the body sees them as "self". This is why anti-rejection medication is not needed when doing a SCT with hUCSCs in the manner that is done by Beike.

How do you make sure that the stem cells you are using are a match for the patient and will not be rejected?
Umbilical Cord Stem Cells, aka UCSC’s, do not require matching. In the life span of a stem cell umbilical cord derived stem cells are considered to be the youngest or least mature of all the stem cell types. These UCSC's (Umbilical Cord Stem Cells) simply lack the exterior surface antigens (protein markers) which would indicate to the hosts body that the cell is "other" thus the recipients immune system sees it as "self". Upon being transfused into the body the UCSC’s will of course be noted by the hosts immune system which will respond by releasing white blood cells, aka WBC’s, in effect sending these white blood cells out into the body to do a search for foreign substances. Upon encountering the stem cells the white blood cell (WBC) will literally bounce around the exterior of the stem cell checking it for very specific proteins which are attached to the cell’s exterior cell body. These proteins are considered a type of antigen marker. When the WBC can not locate the "foreign" antigen markers it reads the new stem cell as "self". This allows the host’s body to receive the Umbilical Cord Stem Cells with no fear of rejection and thus no matching is required and "rejection" is not an issue.

Since the stem cells are still an implant could not any implant be rejected?
Technically we are not "implanting" the stem cells. We have two delivery methods; one is an "infusion" of the cells, growth factors and cord serum into the blood stream and the other is an "injection" of the cells and growth factors into the spinal canal where they then mix with the SCF (Cerebral Spinal Fluid).* We do not infuse or inject any Red Blood Cells.

What creates rejection by the host body is the reaction between the host’s immune system and a foreign substance?
When any foreign substance is placed into the body our immune systems are activated by a slight elevation in body temperature. Once activated the body alerts a very specific type of white blood cell (WBC). This type of cell will seek out the newly introduced stem cells. Its job is to determine weather the stem cell is a foreign substance. This determination process is commonly referred to as determining "self" from "other’. The WBC’s will literally bounce around the exterior surface of the stem cell. It is physically checking it for very specific protein markers known as "antigens". These proteins located on the surface of the cell are like a secrete code and if the WBC does not see the right code it will determine the stem cell to be "self" and thus leave it alone to go about its business. Umbilical Cord Stem Cells lack the antigens that would identify them to the WBC as a foreign cell or as being "other". The body’s immune system sees them as being "self" and no rejection occurs.

Is it true that umbilical cord derived stem cells have a genetic finger print and this leads to rejection issues?
No, this is not true. References made to "DNA" and/or "fingerprints" does not apply to this type of stem cell. It isn't DNA variations per se, but surface antigens, often referred to as "markers", that signal "self" from "other". "Self" being the bodies own matter and "other" being a foreign substance. The consensus of studies published in scientific literature is that human umbilical cord stem cells (hUCSCs) provoke little in the way of adverse reactions due to antigenic recognition by the recipient. Meaning that they lack markers and the body sees them as "self". This is why anti-rejection medication is not needed when doing a SCT with hUCSCs.

Grafting vs. Host Disease (GVHD) GVHD is one of the most common and life threatening side effects of a stem cell/bone marrow transplant. GVHD occurs when the transplanted stem cells recognize the recipient's body as foreign, and "reject" it. Cord blood transplants have had a noticeable lack of GVHD because the stem cells from the donor do not need to match the recipient as with bone marrow.