Saturday and Sunday, February 3rd and 4th - Day 22 and 23 in Hangzhou, China
Hello all on Superbowl Sunday!!! :-)
Fortunately for us, as satellite dishes are illegal in China, I have found some CBS internet video streaming sites so we'll be able to watch the game on my computer at 7:30am Hangzhou, China time. We'll have to set the alarm to wake up of course ;-) A Superbowl breakfast party?!?! Ok, we can try it once :-) We'll also have the game Tivo'ed at home in case we want to watch it again I guess.
Tori continues to do well as she has been calm and basically not agitated during the days and entirely sleeping through the nights. Saturday she had her normal rounds of therapy with James. PT in the morning followed by acupuncture and EMT in the afternoon. It didn't seem like she was as bothered as much during the PT as James went through all of his stretching routines. She didn't cry, scream or grimace nearly as much as usual but that just might have been due to her good mood I guess. If she can maintain that attitude for several PT sessions then I'll be impressed. When James is working with her fingers he can now place them in a totally extended and straight position without having Tori go ballistic. She even tends to keep them in that position for a little while after stretching but her brain eventually causes them to slip back into the curved wrist and fist position... Tori's brain is still sending signals to her muscles to 'clench' pretty much at all times. The tightness may vary but she is still continuously 'clenching'. Tori is now doing slightly controlled lifts of her legs when she is focused. We keep working on this by having her try to kick our hands when placed over her feet. Electrical stimulation on the acupuncture needles placed in Tori's limbs has been going on for a few days as well. This is designed to help her movement as well.
We are also trying to keep Tori eating each day. Usually a yogurt and pieces of a banana. One of our challenges has been getting her to close her mouth and lips around a spoon to take the contents off when it is pulled out. This has always been very hit and miss but she was able to do this very well in four consecutive bites last week!! I would still like to see greater quantities of food going through her mouth though and we'll keep trying of course!!
Since Saturday was so nice here we decided to take Tori outside and over to the park which is across the street from the hospital. She enjoyed being outside in the sunshine and we spent a good hour and a half outside strolling through the park. I videotaped the experience and the Chinese students across the river gave us plenty of hand waves and some shouts of "Hello!!" :-) I posted a few pictures of our walk in the Image Gallery. Tori had Sunday off and it was a 'free day' so she relaxed, watched movies and had a little nap. Tori's fifth and final SCT will occur next Wednesday.
Maria went shopping and eating in Hangzhou with Grace again on Friday and toured the beautiful West Lake area a little more. I ended up getting an awesome, Chinese foot steam, wash and massage on Saturday for the whopping price of $8.50 for 80 minutes of pleasure and pain!! :-) My foot masseuse spoke her only English as she forcefully pressed her thumb into a sensitive pressure point on the bottom of my foot and asked me "OK?!?" while signaling 'OK' with her hand as well. I was surely grimacing as I replied "Yes!! Yes!! OK and please hurt me some more!!" ;-) I'll be going back again and will surely be bringing Maria along for the experience.
It is also very festive throughout China right now as the Chinese New Year fast approaches. Even now, there are fireworks going off throughout the day and night though the holiday doesn't begin until February 17th. This holiday season lasts two weeks and it is when entire families get together much like Christmas in the USA. Everyone takes at least one week off from work. With 1.3 billion people in China, it is expected that over 200 million people will be traveling during this time via airline, train, bus, automobile, motorcyle and bicycle. That is more that the entire populations of France, Italy and the United Kingdom combined!! The USA has about 300 million people total so just imagine if 2/3's of them were travelling at once?!?! Talk about gridlock... We've been told we are heading home at a good time though on February 12th while everyone else is just beginning to come into China. We shall see...
Lastly, I have yet to speak with Maya's parents about her progress after her first SCT program last year but I have reviewed her progress that is presented on her site. Jon also provided some input on staged SCT improvements in his previous post. However, I have been able to speak with and personally witness another patient's wonderful progress during her SCT program here at the Xiaoshan Hospital!! Poptelecan Marinela is with her husband Revfrioan and is from St. Paul, Minnesota. Poptelecan has Multiple Sclerosis and she began her treatments shortly after Tori did. Since her PT session is in the same room as Tori's and scheduled at the same time as well, I have had the opportunity to observe first hand her improvements. During her initial evaluation she couldn't roll from her back to her side, couldn't raise her legs while on her back, couldn't lift her arms upward more than twice with 2lb weights attached while on her back and she became exhausted after only ten minutes of therapy among other things. I personally saw how she struggled!! And I've personally seen how she has greatly improved!! Up until now, she has had 3 SCT's and the daily PT, acupuncture and EMT. She tells me she has so much more energy now, is happier, certainly laughs more and she can now actually DO the actions I mention above and much more!! She can now roll onto her side from her back numerous times and I saw her do 12 repetitions of arm raises with 10lbs of weight attached on Saturday!! She is visibly much stronger has more endurance as well. She is a wonderful person and I asked her before hand if I could mention her on this site. So to top all of her progress off, for the first time in over EIGHT YEARS she was able to stand from her bed, get into her wheelchair and make it into the bathroom by herself without waking or having her husband Revfrioan help her. Her previous need to go to the bathroom EVERY HOUR during the night has also now been reduced to just ONCE and she can do it herself. Isn't that just FANTASTIC?!?! She is excited to go home so she can demonstrate her progress to others. We are so happy for them both and hope and pray for her continued progress!!!
I am certain if Tori could speak or effectively communicate with us that she would also indicate improvements but FOR NOW, we'll continue to rely on our own observations of her actions and behaviors to come to the exact same conclusion. We are eager to see how much more she can improve over the next six months and more.
Thank you all,
The Schmanski Family
Yeah!
It is soooo good to see Tori with you two outside at the park! Thanks so much Tim for the pictures. I love them! I'm so glad Tori is doing better and able to venture out a little bit. I love reading your comments Tim. You are helping so many people with all your information and research! I had to laugh at your foot massage experience...that is too funny! Would have loved to see some pictures from that?
I got a great surprise the other night when Tim called my cell phone. It was amazing! I missed getting to talk to Maria though... you were out shopping.. what a surprise. tee hee
Keep up the amazing work you are all doing. Especially Tori. I love you tons,
Mare
Article on Brain Injured Child with Beike Stem Cell Treatment
Hey Tim,
Thanks a lot for keeping us up-to-date on the other patient's progress. When you see Grace, please tell her that I am litterally going to cry if she has not been keeping up on our Minnesota friend's progress with video. We have so many good cases but getting good video is more difficult than you would guess, especially when everyone is thinking about patients' comfort and health first.
This is pretty much what you can expect on average - or a little below average - from the stem cell treatments. (I the author went a little over the top on the title though).
http://www.barnstablepatriot.com/government_fiddles_while_afflicted_burn_news_12_11209.html
Government fiddles while afflicted burn
Stem cell funding would give local boy new hope for cure
By Paul Gauvin
pgauvin@barnstablepatriot.com
Nero fiddled while Rome burned. Now the U.S. Government fidgets over stem cell research funding while a 15-year-old boy in a quiet cottage on Route 6A, West Barnstable, struggles mightily for a comprehensive life.
Jonathan Raylove’s best current hope to overcome brain damage caused by trauma (he nearly drowned when he was 4) is via the injection of stem cells that can replicate cells damaged in the accident. Jonathan now has a condition called hypoxic ischemic encephalopathy, which deprives him of movement, speech, laughter and even swallowing.
The Patriot interviewed his parents a year ago last week, after Jonathan had undergone stem cell treatments in Mexico, there because the procedure was outlawed in the United States.
“The Mexican experience didn’t do much for Jonathan, except connect us to China,†Jonathan’s father, Robert Raylove, said this week. China is leading the world in human stem cell therapy, Raylove said, while noting his family and thousands of others are still waiting for the pioneering
human therapy and new stem cell lines to be sanctioned in the United States.
On Jan. 11, the U.S. House passed a bill to extend federal research funding to newly derived stem cell lines, a measure backed squarely by the Rayloves and families of children with cerebral palsy, and elders with Alzheimer’s, Parkinson’s and other afflictions that might be ameliorated or cured via stem cell therapy.
Raylove is an acutherapist working out of the 6A cottage, and his wife, Edith “DeeDee†Tonelli, Ph.D., is a licensed family and marriage
therapist who stays home to care for Jonathan and accompany him on faraway odysseys in the quest for a cure.
Two of those scientific adventures have been to China, one near Hong Kong last March, and a second in Beijing in September, where, Robert Raylove said, “Jonathan underwent a different technique, much more intense. He received daily stem cell injections into the spinal fluid and IVs (intravenous feeding) of researched supplements to help stem cells grow.â€
Raylove paused a moment.
“It takes a lot out of Jonathan … out of the family.â€
While Nero fiddles, the Rayloves wait for the day therapy will be available close to home.
Has any of this helped Jonathan who, despite his condition, continues to grow longer and larger with age?
“It has,†says his father with guarded joy, “in observable ways. After the first China visit, we noticed stronger head control, from side to side that was pretty obvious. He also manages secretions a lot better. He swallows little, but is managing saliva better, has a stronger cough, and that’s a big thing…because it makes him less fragile… to aspirate.
“He’s more attentive, will turn his head to look at you. When he hears my voice as I walk across the room, he turns his head in the direction that I’m walking. He never did that before.â€
Now they are waiting for results from the second trip to China. “We left China in November. The doctors said it could take three, four, five months to notice any change. We watch all the time but we’re not seeing much yet. We probably won’t until the end of February, maybe March or April,†Raylove says with a whisper of hope in his voice and a part of Jonathan on his lap.
“It takes time for cells to grow. They injected cells one or two million at a time into the spinal fluid, which is in a closed system, hoping the cells will wash through the system to the brain. The hope is the cells will migrate to the injured parts of the brain, colonize and grow and replace the missing tissue.â€
The Rayloves are hoping gains are made politically in this country to advance stem cell therapies and new lines from umbilical
chords, so that the religious/political issue of embryonic cells can be avoided.
Supporters of extended funding for new lines in Congress did their part last year in passing such a bill, only to have it vetoed by President Bush – his first an only veto. Bush has already notified Congress that if it passes another bill, he will veto it again.
This year, the bill passed 253 to 174, and while it gained 15 affirmative votes over last year, the numbers are still too short to override a veto.
Washington circles say there is a move afoot by supportive legislators to end-run the veto threat by possibly attaching the stem cell bill to “must-pass†legislation, such as funding for the Iraq War or other parliamentary devices.
Raylove says stem cell therapy isn’t the only possible cure for Jonathan’s and other similar conditions, but it is currently the most advanced and offers the best hope.
“It’s amazing,†he said. “Damaged brain areas do send chemical signals. It’s like waving a red flag so that injected stem cells will migrate to where the signals are coming from. It’s miraculous, really.â€
The problem is, Raylove said, there is no scientific way yet to monitor whether the injections are working. “We can only tell by behavioral changes. At some point, you would think science would be able to scan the brain to find changes in the tissue – but nobody’s doing that yet,†Raylove said.
It will be easier in the coming months to see if the U.S. government has changed with its new injection of Democrats, and whether China is able not only to knock U.S. satellites from the sky, but outrun Uncle Sam in the flowering frontier of stem cell science and therapy.
Re: Articles on Brain Injured Children with Beike SCT
Thanks for posting this Jon and I have also been following Jonathon Raylove's story as close as I can. The article below on Michael Mobley who was here in Hangzhou prior to Tori's arrival also just came out. I think each one shows that we need to be as patient as possible when waiting for the results of SCT.
Father, son undertake journey for therapy
Pair flew to China for controversial stem cell treatment
WENDY VICTORA
Northwest Florida Daily News, Fort Walton Beach
FORT WALTON BEACH - In a corner of his dad's front room, Michael Mobley slumps in a blue recliner.
A powder-blue diaper peeks above the waistband of the teenager's sweatpants.
His head droops forward and to the right. At regular intervals, the 15-year-old jerks it up and around, making fleeting eye contact with others.
That may be a sign that the therapy Michael traveled 9,000 miles to receive is starting to work. His father, David Mobley, took Michael all the way to China, where doctors repeatedly injected stem cells into his spine and bloodstream.
David is afraid to hope his son will heal.
The Fort Walton Beach man is equally afraid not to.
"Believe me, when you're in this condition, you look for any change you can," he said.
Michael was 14 when he drowned and was resuscitated after becoming intoxicated at a beach party with other teens. His brain had been starved of oxygen from anywhere between 10 and 30 minutes, which caused extensive brain damage.
Since that day in June 2005, he has been in a persistent vegetative state, much like Terry Schiavo was, his father said.
That's what led him to look into stem cell therapy, which he learned about online through a support group for parents of brain-injured children.
"Parents have to be careful. It's your child. You'll do anything. People will take advantage of you," said David, who added that there are a number of alternative therapies available.
Of those, stem cell therapy offered the most hope.
"It's not a magic bullet. On the other hand, it's not black magic, either," he said.
Suspending disbelief
Although stem cell therapies are used today in the United States, they are limited to the treatment of specific diseases such as leukemia.
Technically, a bone marrow transplant is a stem cell therapy because the patient receives healthy bone marrow stem cells from a donor to replace abnormal ones.
But for neurological injuries like Michael's, there are no stem cell therapies available.
Nor is there hard evidence that the therapy will work.
"Whoever is selling you this therapy is asking you to suspend disbelief," said Charles Murtaugh, assistant professor of human genetics at the University of Utah.
He is researching stem cell therapy in the treatment of diabetes.
Murtaugh said much of the stem cell research in the United States is being conducted on animals. Research involving humans tends to focus on identifying specific stem cells and how they might be used in treating a particular disease.
He said that it is not clear whether stem cells could be used to help repair brain or spinal cord injuries.
"There is evidence that some cells from cord blood could do something like this, but the evidence is ambivalent," Murtaugh said.
"If it was true, I think there'd be a lot more people working on it," he added. "I haven't seen a lot of movement in that field."
Journey for hope
In doing Internet research, David Mobley found stem cell therapy available for Michael in only four countries: China, Costa Rica, Mexico and the Dominican Republic.
Of those, he chose China because the $20,000 fee included a six-week hospital stay, which included a mix of eastern and western medicine.
David withdrew money from his 401(k), and in late November he and his wife of two years, Dana, flew a commercial airline to China with Michael.
They moved Michael - a "152-pound infant" - in and out of airline seats and wheelchairs for the 30-hour trip.
Over the six-week stay, doctors injected four doses of umbilical cord stem cells into Michael's spinal cord, with a fifth introduced intravenously.
Doctors told them that sometime in the next three months, the immature stem cells introduced into Michael's system should cause him to "wake up" and "do something."
"What I'm personally hoping for is in the next couple of months (that he'll be able) to give me a yes or no," David said. "(The) long-term goal is that he'll come back, 'Where have I been for a year-and-a-half?' " his father added wistfully.
Quality of life
It is still easier to list the things Michael cannot do than the things he can. Like Schiavo, he has a feeding tube because he can swallow nothing, even his own saliva. He can feel all of his extremities but moves none of them voluntarily.
Michael's eyes do not track movements or colors and, when his father plays music Michael downloaded before the accident, the boy has no response.
He laughs randomly, and occasionally - heartbreakingly - cries.
So far, the only definite improvement they have seen is that a skin condition that plagued Michael since the brain injury has all but disappeared.
Other signs of progress have been more difficult to measure.
He hasn't slept through the night since the accident, which means his father hasn't, either.
When Michael wakes up, the baby monitor in his room alerts his father. His diaper may need changing. He may need his position shifted. He may just be awake. He can't tell his father.
The brain injury appears to have permanently altered his body clock, his dad said. And every time Michael wakes up, David does too.
"It would be pretty bad if he died on my watch," said David. "Right now, it's just maintaining him physically until the cognitive part kicks in."
Another day
For now, David just focuses on the moment that is right in front of him - on surviving that one, and the one immediately following.
Michael goes to Silver Sands School during the day and will attend until he is 22.
Sometimes, David thinks about Terri Schiavo, about how her life ended. He and his son talked about that as well.
"If you're asking me what he would have wanted, he would not have wanted this," David said. "But he does not have that choice."
For now, David is focused on looking for evidence that the stem cell therapy is working, for proof that he has gotten even the smallest fraction of his son back.
"All we gotta do is make it through another day, another day, another day. I can't look way into the future," he said.
"If I look too far, I might see the truth, you know, and I don't know if I want to."
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