Sat Aug 9 – Stem Cell Treatment Assessment as we head for home

Our thank you gift to Ward, picture of Plum Blossom Flowers

[caption id="attachment_383" align="alignnone" width="300" caption="Saying Goodbye"][/caption]

Goodbye gift to Ward 20

Well Day 40, Aug 9th and homeward bound Tomorrow. It’s been a long haul; 41 days is a long time to be in a foreign country, never mind a hospital.
We believe it has been a worthwhile experience. Art has experienced multiple ups and downs during his stay here. The last week here we’ve been trying all of China’s great knowledge of Traditional Chinese Medicine, hoping to rebuild his energy for the trip back home. I’ve even asked for five days of ‘western medicine’ (what they call IV nutrients, which is a 1000 cc. bag containing Vitamin B6(200 mg) and Vitamin C (2gms) in N.S.)
Art caught a cold a week ago, which left him feeling fairly weak with cough, congestion and all those side effects nasty colds come with . No Fever though ,that’s the good news. I believe it probably was the result of being in an air conditioned room ,day in and day out, with only a few hours outdoors. The temperature was 38 plus up to 42 plus outside. MS patients can not cope well with heat, so not many choices, except remaining in our room. Outside one couldn’t in all honesty call the polluted air, fresh air ,that would be stretching the truth some. This week we’ve seen blue skies, I believe because of Beijing games they’ve closed down several factories around Beijing and several cities beyond.

We had our big meeting with Dr. Sword, and an interpreter, to assess our stay and treatment with stem cells for Art’s condition. We spent 45 minutes with Dr. Sword, as I had many questions regarding our expectations for the next 3 to 5 months. Our interpreter is Italian, Dr Sword, Chinese, of course and with me speaking English we attempted to communicate clearly; a very difficult process, but I believe I was successful in understanding some of his conclusions regarding possible realistic future expectations for Art.

I will try to explain my understanding of our conversation.
First of all Dr. Sword said, to date, there has been no cure for MS. Stem cell treatment is the best, to date, that is being offered to MS sufferers. They have treated over a hundred people with MS here (at various stages of MS);
Beike in their various centres have treated 1000 plus MS patients. The earlier the treatment the higher their success rate is in arresting the disease from progressing.
When a MS patient has paralysis, the disease obviously has progressed , with often many plaques in the brain or present in the spine. What this means, to the best of his experience, is that patients like Art (with 14 yrs of MS and paralysis) do have a chance of improving their condition with stem cell treatment. He was quite clear in that if there is no improvement in the first 3 to 6 months following Stem Cell Treatment then it ’s not advisable to return for any further SCT, as it would probably not be beneficial.
He noted that if, with continued physio, there is improvement in the first 3 to 4 months, he will stabilize and not improve more after 6 months post SCT. Then, if he wishes to progress, he would benefit by returning for a second and even a third SCT.
He has seen several cases where continued progress has been made with SCT and patients have successfully been able to use their legs again. He also was clear that unless there is obvious improvement in 3 to 6 months, then more SCT would not be advised.

We spoke to James, Art’s physiotherapist, regarding his opinion on what progress Art had made while here. We also wanted to find out what physio program he would reccommend Art follow on his return home. James felt Art had made great strides in his improved leg muscle control and felt ,with continued work, he could possibly walk again. He wants Art to practice standing at home, to strengthen his knees, so his balance improves. He is impressed with his upper arm strength and encourages him to continue arm exercises. To conclude, we were encouraged that his physio therapist had confidence in Art; that, in time, there is a possibility that walking could be a reality.

Art Would like to take it one step at a time. He intends to give it his best shot, with physio, swimming at the Tri-Leisure Centre and assessing his future plans in November.
He wanted to get the most out of this visit to China by receiving the extra Bone Marrow Puncture Stem Cell Treatment. The physio here is excellent and the acupuncture and wave therapy treatment is effective. I see obvious improved muscle tone in his legs. I note also (in spite of his severe footdrop problems) his right leg and left leg (the lazy leg ) do move forward (with help from James with bending his knee first). At the beginning it was obvious his upper body strength was moving his legs, not because of messages from his brain. The apparent improvement of messages being relayed from head to legs now could be the ‘cussedness’ of the Soetaerts or SCT effects or both. We will have to wait and see what happens in the next few months.

It would be nice if Canada would get over it’s ( ethical ?) problem re using new born cord stem cells for treatment. All Canadians needing SCT should be able to receive it in their own country. The Canadian Healthcare system needs to do more to help MS sufferers. People with MS and family and friends of MS patients need to lobby the government to move forward with the use of Umbilical Cord Stem Cells .

We head for home in the morning so will sign off and thank you for following us in the weblog on our journey for Art’s Stem Cell Treatment in China .
We appreciated all the comments you sent us. If people would like us to update the weblog in the next few months let us know .

Art, Viv and Marguerite

Fri Aug 8 – Opening of Beijing Games Celebration

Gift of fruit basket for ward -300 yuan ( $45.00 Cn)

[caption id="attachment_372" align="alignnone" width="300" caption="Sophie and sweet little girl come to visit Art and practice her English"][/caption]

Sara, 13 yr old playing Chinese organ to celebrate Beijing Games on 20th Floor

[caption id="attachment_369" align="alignnone" width="300" caption="Presentation of good-bye gift to doctors (Gift Calendar from Yukon)"][/caption]

Basket of roses for the ward -good-bye gift

[caption id="attachment_366" align="alignnone" width="300" caption="Beijing Opening night party"][/caption]

Party time on the 20th Floor

Aug 8th and China is celebrating the opening of the Olympic Games . All of China is celebrating and one could hear the fireworks even from our room on the 20th floor. You could see the fireworks in the distance from our room.

Our interpreters Johnny and Rebecca have been preparing for a party to celebrate the event all week. Everyone on the ward has been invited to come and join them to watch the opening ceremonies on TV in the Recreation Room. Johnny said feel free to bring a dish from your country or fruit to share; Beike staff provided beer, juice, chips and Moon cookies, eaten on special occasions.
There was much excitement and considerable photo taking; every nurse and doctor was hanging around Art’s neck having their picture taken with him. He’s one popular man with all of them ,especially the female doctors and nurses. They call him a very handsome man. It must be his winning smile that gets them.
They were very proud of the opening acts; explaining some of the ancient chinese stories they were portraying. All of us clapped appreciatively after each act. It certainly was very impressive.
Viv and I made Hawai Pizza as everyone loves fresh pizza from the oven. We now pass around Lorenzo’s revised pizza dough recipe which is a never fail recipe, of course. Wonderful fruit and cheese dishes, so lots to eat and a great break from the routine .
Today was Art’s last stem cells which were his return of the bone marrow puncture from last week.
We now have four babies, one 3 yr old boy here, and one young Chinese boy. The rest of the patients are adults. The children are all CP .

Romania has four Muscular Dystrophy and one young women from China who suffered a head injury from an MVA, which resulted in her paralysis . All the patients and their families are very friendly ; we share stories, food and DVD’s to pass the time away.

We’ve been packing up our goodies and are very ready to head for home. Take note of the basket of fruit. That was the basket of fruit we bought for the ward from us, as a goodbye gift. You either give flowers or fruit as a gift when you leave. The basket cost 300 yuan, not bad for a basket that size (a work of art if you ever saw one ).

Wed Aug 6 Pictures

Art with his favorite nurse Sophie

[caption id="attachment_357" align="alignnone" width="300" caption="Dr Mike with his medical crew"][/caption]

Second lap on the parallel bars with James helping to bend the knees

[caption id="attachment_355" align="alignnone" width="300" caption="Art\'s Morning Walk"][/caption]

Mon Aug 4 – Count down: 35 done,6 more days to go!

Aug 4-Art and his blue 'angels' gpoing for stem cell treatment # 8

[caption id="attachment_348" align="alignnone" width="300" caption="Art with one of his doctors"][/caption]

Neighbors from the 20th floor

[caption id="attachment_345" align="alignnone" width="300" caption="Farewell to Zachary, his mother Bernice and tante Janice (far left)"][/caption]As we approach our final week, we are excited with anticipation for our return to clean, cool, fresh air and fresh garden vegetables.
Saturday, we decided to return to the New Century Grand hotel for their buffet. Ken and his wife Christine from Saskatchewan and her sister Cathy
joined us ,where we celebrated Ken’s ( Check his M.S. Blog ) birthday. It was a lovely evening with a refreshing light rain. We feasted after a long week where Marguerite and I were afflicted with some kind of gastro parasitic evil little bugs. ( I believe we are all going to need the Ionic Foot Bath to zap those nasty little parasites!) Luckily Art has a strong stomach and was not affected. He enjoyed a rather tempting, delicious plate of roast beef . Viv and I enjoyed the fresh sea food and desert of course (tiramasu ! yummy !),

unfortunately ,Art woke up Sunday with a sore throat and is back on antibiotics. Dr. Michael did blood work; it appears his wbc’s are 15,000 and kcl is down. He’s on Azithromycin and more Chinese Traditional Medicine for his cold. I assured Art after extra kcl given IV and more TCM he should once again be re energized. The best treatment, of course, will be his Number 8 treatment of stem cells to be given at 2:30 pm today.
He had no elevated temperature during this bout of a cold, so will be allowed his 8th stem cells infusion. Something is going around, as many of the staff have sore throats and run around wearing masks. No one stays home here, even if they are ill..

All of the 20 th floor of the hospital is dedicated to stem cell treatment.There are 13 rooms for patients. All the nurses and staff are unbelievably friendly. They make a great effort to learn some English, more successfully then our efforts at Chinese.
The funniest term they use is on doing daily vital signs. A very pretty little Chinese nurse will usually ask Art: “Have you had a ‘caca’ today?”. We’ve been trying to get them to use a different term, but to no avail . A good chance came today when they were going over a list of English phrases ,one of which was ‘Bowel Movement’. Viv took the opportunity to explain that we only say BM not the whole thing. After reassuring them that most people would understand BM, they repeated ‘BM’ and if they do not answer correctly will say ‘caca’.

We said our farewells to some good friends we met while here. I’ve mentioned good looking 16 yr old Zachary with Friedrick’s Ataxia. He was quite happy as his thumbs are once again functioning at full capacity (enabling him to play his electronic games once again.), his toes have straighten out and his speech is very clear ,back to normal. His gait, although not perfect, has improved with his body having better balance and able to walk with less of a lurch. He was wishing for more, but realizes he must have patience and the cells will continue to do their repair job. Zach,his mother Bernice from Windsor ,Ontario and Aunt Janice from Halifax were very warm, friendly French Canadian people .

John from Romania ,the Lawyer with Muscular Dystrophy was chatting with us; he likes Art’s power chair. He has had M.D. since he was one and a half years old. He speaks about his friend in Romania who came here last year. His friend had Muscular Dystrophy and was unable to walk. After stem cell treatment here he went home and progressed to walking by himself ,though not perfectly, within 5 months. John is hopeful that he will have some similar results and intends to return within the year if he has success in gaining strength to his body, especially legs and arms.
A interesting note is that MD patients cannot receive stem cells via Lumbar Puncture due to the problem of being unable to be flat on their back for six hrs. Another problem may be the difficulty of accesssing the right spot on spine due to MD. Instead, the stem cells are delivered under general anaesthetic. It is injected into the muscle via multiple little injections into the legs and arms . This method appears to be quite effective and not painful on awaking, due to the delivery having been given in multiple small doses.

Hope you enjoyed our pictures , I got carried away . Note to Don The silk pictures belong to Cathy and Christine, who now are in the process of buying a new suitcase ( the result of many trips to the silk market) .

Sun Aug 3 – Pictures from China

Art and his nurses and Dr Hong

[caption id="attachment_330" align="alignnone" width="300" caption="Silks bought at the Market"][/caption]

Giant friendly Budha at Wushan Square

[caption id="attachment_328" align="alignnone" width="300" caption="Shopping at Wushan Square with friends Cathy and Christine from Saskatchewan"][/caption]

Aug 2 - Celebrating Ken's Birthday at Grand Century Hotel

Art was doing very well yesterday and we headed out for our walk around 5:30. We went out for supper again at Grand Century hotel with Ken , his wife Christine and her sister Kathy (from Sask.) Ken was celebrating his 52 birthday.

Fri Aug 1, Second Bone Marrow Harvest

Art preparing for OR by reading. Note lovely striped O.R. gown!

[caption id="attachment_319" align="alignnone" width="300" caption="Art back from OR - Second Bone marrow puncture done!"][/caption]

Art on his way via Elevator to OR for second bone marrow harvest

Well Art has returned from O.R. and looks fine . We put a lifting sheet under him this time, on my request, and the transfer from bed to OR table and back was much easier. No grabbing of him by his skin and using a mighty pinch to drag him over, hopefully will not have the same bruises as before.

Regarding ordering of Dorsi straps heavy duty for foot drop ,have a site where they can be to ordered from. They could be ordered now and used when he returns . The orthotics can be fitted and then heavy duty shoes purchased later.

Dorsi straps can be ordered by going to the ‘ebay site’ and looking up www.http;x-strap.com Dorsi-strap pro (Heavy Duty for foot drop) is $42 U.S. ; Dorsi-strap lite (for foot drop) $48 U.S. It’s a “day /night; wet/dry” foot Splint for wearing at night for sleeping (to keep foot in proper place) and for swimming

These fairly reasonably priced straps will help him correct the neuro pathways that are now hindering the ability of his feet to place them one foot in front of the other, because of his severe foot drop. The messages seem to be getting through now, but the damage from the foot drop is holding him back .These will also help with his swimming stability getting in and out of the water.
Most of this info I got from a nurse from Australia who has M.S. and uses these straps to correct her footdrop . These you can get without a specialist ordering for you, or being there for exact size as they are used with velcro straps, so are very forgiving . Due to the fact that they are not too costly, it would be beneficial to order them now and use them right away . Knowing the system it will be months before anything is done through healthcare services .

Fri Aug 1- Stem Cell Treatment Overview

Little Laura (CP) with parents Lorenzo and Corina, from Romania ( will be returning for third treatment)

[caption id="attachment_312" align="alignnone" width="300" caption="John, a lawyer with CP and Adrien, a MVA victim who was told he would never walk again; and is, both from Romania"][/caption]

Ken from Regina, Saskatchewan

[caption id="attachment_310" align="alignnone" width="300" caption="Zachary from Windsor, Ontario"][/caption]Well, five weeks have gone by and we’re on the final countdown,we will be leaving for Canada Aug 10. It’s been quite an experience – seeing how the Chinese Beike Group of scientists have made enormous progress in the realm of stem cells and their healing power to regenerate renegade cells gone amuck through accident or immune disease. There are no immediate miracles, except perhaps with the ONH optic nerve hyperplasia patients. Their ability to see shapes and colour begins with the first infusion of stem cells. Apparently stem cells, although they start to work immediately on entering your body, are most effective up to 75 days following treatment.

The Chinese have found that doing active physio with proper body mechanics helps the cells to heal those areas where damage has been done. Their greatest progress has been in their ability to extract and multiply the stem cells which they procure from the placental sac and the cord of new born babies. Similar to organ transplants, the stem cells are delivered fresh on ice (sent via air travel) they are picked up and delivered to the hospital and are then given either via IV infusion or via spinal Lumbar Puncture. What is very different about their technique is they have the ability to give 100 million stem cells per infusion versus other places, such as Mexico or Dominican Republic, where the most they can give might be 100 to 200 ,000 at a time .

The Chinese Beike company has also progressed ahead of other countries in their ability to now use the 200 ml of bone marrow ( patient’s own ) they extract from a adult and multiply it to a count number of approximately 5 to 10 times (plus) the 100 million stem cells they get from the umbilical cord.
Interesting enough, if a person has had Hepatitis in their life time they will be unable to be a candidate for giving or receiving their own bone marrow stem cells. This has happened to a patient here from USA who has never had symptoms of Hepatitis but apparently tested positive during the investigation of his blood work. He’s in his 60’s and was in the Vietnam war so chances are he could have gotten Hepatitis along the way. I always thought you would experience some symptoms of the illness at the time of its invasion of your body, but what do I know. Supposedly 20 per cent of all Americans test positive for hepatitis. I wonder what the percentage in Canada is?

For children with Cerebral Palsy having a Bone Marrow Puncture and infusion of the same, does not appear to be beneficial, neither for Ataxia or Friedricks Ataxia. Most of the children get their acupunture to the top of their heads and arms and feet. We’ve met several CP children, with their parents, who are here for their second (and one returning next year for her third )treatment. Little Laura ,5 yrs old, from Romania, has progressed so much since her first treatment here in China they are busy earning the money to return .

The young 16 yr old boy from Canada with Friedricks Ataxia had immediate results in his speech, which had become quite slurred and at times incomprehensible; his gait went from a very awkward throwing of his body forward (he’s 6 ft. tall) to a much improved steadier gait. Apparently his personality improved also; the angry episodes less.

Ken from Saskatchewan with M.S. has improved his gait and now can walk the ward with only a little help without his cane. Most patients with MS are very frustrated with the Canadian Medical System, feeling that the system has let them down; telling them to live the best they can as the outcome is the same. In other words ; you deteriorate from the disease and then you die – no hope for recovery in any form.
The new stem cell treatment in Ottawa is very forward and could be a ray of hope for many, but they are very selective in who they choose to allow into the program ,obviously wanting only those patients with the greatest chance of success.

Art has made obvious improvement since his first stem cell treatment, in that he seems to be able to do his physio with less effort and considerably improved body alignment while doing his various exercises. He may not be walking without a lot of help from James, but the messages to his legs to move on his command are good to see. Proper shoes for his foot drop should improve that a lot.
We intend to get him working out at the swimming pool at the Spruce Grove Tri-Leisure facility. Michelle, his physio therapist has offered to give him a session, showing which exercises in the water would most benefit him. They have a handicap chair to assist him into the pool, so it’s a matter of getting everything into action. Don will be joining me in Edmonton for a week, so will help me get him started and comfortable in getting in and out of the pool. Once we’ve accomplished that hurdle, we’ll try to organize some type of schedule where he can get a ride to the pool and either hire a lifeguard for a couple days a week or have someone go in with him to get his water physio done.
We’re especially concerned about the first 75 days after he returns home as its most vital that daily physio be done to stimulate all these new stem cells to work at their optimum. The 0nce every 2 weeks physio available now through Health Care is not sufficient to continue his improvements and to build on what he has so far obtained in china.

Even though he’s had a topsy turvy time here with unusual symptoms of weakness in between treatments , Art’s convinced the stem cells are working to his benefit . On hearing that many are coming for a second time, he decided to take advantage of his time here and asked Dr. Michael to consider giving him a second Bone Marrow puncture, and allow him to receive them back before he leaves . The Doctors were very surprised at the request and stated that he would be the first patient to receive two bone marrow transplant during a stay with them. It took them two days before they returned with the affirmative decision on doing a second BMT. They said due to him being a ‘big boy’ he should have no trouble dealing with the loss of another 200 ml. of bone marrow.
Today Art is fasting for his Bone Marrow puncture and we’ve been up since 5;30 am. He showered and stayed up as he’ll be on 24 hr complete bed rest ,so might as well enjoy being up. He’s been reading Why God Is Laughing . By Deepak Chopra, given to him by Connie before he left.

Thur July 31-Traditional Chinese Medicine

July 30 Stem Cell Treament # 6; via Lumbar Puncture

[caption id="attachment_286" align="alignnone" width="300" caption="Traditional Chinese Medicine -Um Um Good!!"][/caption]This week has been very busy. In an effort to improve Art’s roller coaster energy levels we decided to look into TCM (Traditional Chinese Medicine). Dr Michael did blood work first , then when everything was normal, he called on a TCM doctor in the hospital.
Dr Leong ,a very distinguished, Intelligent looking, older doctor examined him . After checking his tongue and pulses; complete history and much discussion with the nurses, he proceeded to write up a long, detailed report. He was concerned with Art’s hard distended abdomen, and on leaving he said he was going down stairs to cook up his medicine. The nurses were chuckling and said it would taste very bad and he would need a candy to follow it. Apparently all TCM taste very bad.
Art found the taste not too bad, but it proved to be a very powerful diarrhetic. Something must have worked because he has completed all his physio this week with good recovery following his treatment. His abdomen is now soft, and his personal dietition can now reach around his abdomen.
You will be surprised at the new slimmer Art. His physio is much improved with good body alignment and today he successfully did 3 laps with help on the parallel bars. James was very happy with his progress today.

Art has successfully completed his sixth stem cell treatment (July 30). Tomorrow, Art will receive his seventh stem cell infusion via I.V.
In the morning ,he will go to O.R. to get his second Bone Marrow Puncture .They make him lie flat for 24 hrs following his bone Marrow puncture, a bit of overkill, but we will listen to the doctors orders.

We’re on countdown now as we have only 10 days left, before we head for home .

We look forward and appreciate all the comments and good wishes sent from home

Pictures from Outing

Heading home after night on the town

[caption id="attachment_279" align="alignnone" width="300" caption="Getting pampered in China"][/caption]

Massage in the power chair - High reach!

[caption id="attachment_277" align="alignnone" width="300" caption="Back massage ; before foot Massage; the China way"][/caption]

Cute Waiter ; Great Food

[caption id="attachment_275" align="alignnone" width="300" caption="Night out at the New Century Hotel - dining at Maccacino"][/caption]

We've arrived ! Check out the Limo!

[caption id="attachment_273" align="alignnone" width="300" caption="Chinese family - no bike restrictions here"][/caption]

Hiking to New Century Hotel- Viv and Marguerite miss the Rickshaw ride

Sunday July 27 Report on Saturday’s outing

After the past week, we were all ready for an outing. With Art’s power chair fully charged and the temperature dropping to the low 30’s,we set out for the New Century Hotel, at 6:30 PM. Using the side roads where all the rickshaws and motor bikes mostly travel, we formed a small caravan with Marguerite in the lead .We were a main attraction, with being foreigners and Art’s power chair. Carefully proceeding through the main busy crossways, it took us about half an hour to walk to the hotel.
After touring the hotel, we settled on a Western and Asian Restaurant . It was a buffet with a special , where the 3rd person was free. Art felt it was a little taste of heaven, with nice roast beef and potatoes and seafood and great deserts.

Seeing as we got such a great deal ,we decided we should then all go for a foot massage. They were very accommodating and moved
furniture to fit Art’s power chair. The massages were great with young men doing Marguerites and mine while a cute, petit girl did Art’s.
When she had trouble reaching over the power chair to massage his shoulders, she stood on a stool behind him .
Art was a little nervous when a young man came in to trim his nails with a sharp looking chisel. Sometimes those feet want to dance on their own. Our feet felt very pampered with a full 90 min treatment (no pain like the extra firm one at the hospital).
With Andy’s small book flash light to guide us we returned home safely.

Today (Sun) Art rested and relaxed preparing for the busy week ahead, while Marguerite and I did some serious shopping at the silk market.