Tim Schmanski's blog
Here is a another on Tori and her trip to China in the Salt Lake Tribune this morning. Again, this trip and many other of her treatments wouldn't be possible without all of the kind and generous donations to the Tori Schmanski Fund. Words cannot express our gratitude.
The Schmanski Family
Family seeks stem cell aid in China trek
U.S. research still mired in politics
By Carey Hamilton
The Salt Lake Tribune
Article Last Updated: 01/09/2007 01:18:23 AM MST
OREM - As American politicians debate the ethics of stem cell therapy, an Orem couple is making plans to take their daughter to China to get treatment unavailable in the U.S.
Tori Schmanski, now 16, was left unable to speak or eat after a car accident in 2005. She spent 20 minutes under water after the car she was in ended up in a canal.
Her parents, Maria and Tim, hope their daughter can regain more function by getting millions of adult stem cells injected into her spine. They leave for China this week and will stay for 32 days.
"She's still here," said Tim Schmanski. "There's got to be a reason."
Facing restrictions from the Bush administration, funding for stem cell research is lagging in the U.S., proponents say, and other countries are far ahead with experiments and successes. With their new majority in Congress, House Democrats hope to swiftly pass legislation expanding the types of stem cell research that can be funded by the government.
Linda Kelley, director of the University of Utah's Stem Cell Laboratory, believes the Democrats' push will lead to more money for stem cell research. She supports stringent federal policies but also understands people's angst and desire to pursue treatment.
"I can entirely understand how a family would be frustrated and want to do something like that for their child," she said.
Here is a nice Deseret News article on Tori and her trip to China that released this morning. We want to emphasis again that this trip and many other of her treatments wouldn't be possible without all of the kind and generous donations to the Tori Schmanski Fund. We are very grateful and sincerely appreciate all of the support.
The Schmanski Family
Link to the article: Bringing Tori back with pictures.
Deseret Morning News, Monday, January 08, 2007
Bringing Tori back
Utah teen going to China for stem-cell treatment
By Alison Snyder
Deseret Morning News
A 30-hour flight to the other side of the world is the least of what the Schmanskis will do for their daughter.
Grandmother Sandy Schmanski, left, and dad Tim Schmanski aid Tori Schmanski. Tori was brain-injured in a car accident.
Mike Terry, Deseret Morning News
Especially if it will bring her back.
On Wednesday, Tim and Maria Schmanski will travel with their 16-year-old daughter, Tori, to Hangzhou, China, where she will receive stem cell treatment over a 32-day period at a Beike Biotechnology clinic.
"We're just trying to get more of the old Tori back," Tim Schmanski said.
One day can change everything
On June 19, 2005 — Father's Day — Tori was in a car with her younger sister and two cousins when the car rolled two times and landed upside down in a canal. Despite the water filling the interior, Tori was able to push her sister and cousin out of the submerged car but was not able to get herself out and remained trapped underwater for 15 minutes until rescuers arrived.
Tori had to be resuscitated twice on her way to the hospital. Her brain went without oxygen for an estimated 25 minutes, Tim Schmanski said.
Tori survived, and life has never been the same for the Schmanski family. Tori has brain damage — an anoxic brain injury, to be exact — leaving her unable to speak, eat or move her limbs. Her parents spent nine months with her in the hospital as she battled pneumonia, digestive problems, seizures and vomiting, switching nights sleeping in a chair at her side.
Only three days left before Tori and our adventure begins!! Tori's passport DID ARRIVE on Friday!! I immediately packaged it along with Maria and my passports and sent them overnight to our visa contact who received them Saturday and has already processed them as well!! She will be sending them via overnight mail on Monday so they should arrive Tuesday before 3:00pm. Everything seems to be in place but I'm still quite nervous because I still don't have all of the visas and passports in hand. We are cutting this far, far too close and there is zero margin or error at this point... I shudder at the thought of "What if I hadn't started this process so far in advance?!?!"...
Our living room is now the 'packing room' and there are 5 very large sized suitcases, 4 medium sized suitcases, 3 carry bags and a large backpack strewn across the floor. We are packing 175lbs of Tori's liquid Jevity food because it is unavailable in China. Of course some of that has to be carried onto the plane so Tori can eat during the travel time. Also in our hands will be all of her medications and other medical supplies. I have been in contact with the airlines and the TSA and have all of the proper documentation needed in hand so we 'should' not have any issues. Packing for a 32 day trip isn't easy and since there are numerous items we can't afford to forget we have created a large spreadsheet and will be checking off items as they are packed. I can just see the faces of the airline staff already when we pull into the airport in two cars, Tori and all of that heavy luggage :-)
Tori is remaining healthy and has been watching the packing exercise from her room since our living room sits directly across from it. We keep asking her her if she is ready for her trip to China but she is most attentive when we mention the stop in Paris along the way. Going to Paris was one of her dreams and it is too bad we will just be changing planes there this time... Touring Paris will have to wait for now.
Tori was also entertained by some more photographers and interviewers over the past couple days. Combined with the numerous visitors and well wishers she has been keeping very busy. She has to know something different and BIG is coming soon. Tori's recent media attention has brought us in contact with numerous other families and individuals in similar situations including several who are now scheduling for the same stem cell treatment in China. We are always very willing to share our knowledge and experiences with others who can hopefully provide the same information to us. Sharing and learning from others is vital to continued progress for Tori. We are quite open and will at the very least investigate ANY possible treatments or solutions that may help Tori. But that certainly doesn't mean we will act on them all. We know that we can always do more for Tori.
Brendan, Whitney and Grandpa and Grandma Schmanski are also getting prepared to maintain the home and daily activities. Maria and I have little worries because Brendan and Whitney are in the best hands they can possibly be in. But we are already missing them and we haven't left yet...
Thank you as always for your love, prayers and support.
The Schmanski Family
Wow!!! Only six more days and we are China bound with Tori!! It seems like time is really accelerating on us now. Again, I apologize for the delayed updates lately but it has been quite crazy with trying to get everything ready for the trip itself, keeping Tori healthy and going, doing news interviews and the like and unfortunately, trying to get Tori's passport... I was told today that it was IN THE MAIL and should finally arrive tomorrow though I'll believe it when it is truly in my hands. My visa contact is ready and waiting and she'll have everything done within 24 hours so we should be fine. I'll only feel fine when the all of our passports and visas are in my hands of course!! :-)
Thank you!! Thank you!! and Thank you!! again for all of the supportive verbal and web based comments, email and Donations that have occurred over the past few days!! It is greatly appreciated and we are ever so grateful. The recent news coverage ( Daily Herald , KUTV and KSL 1160 Radio ) about Tori's stem cell treatment and trip has generated alot of interest and awareness. She has many, many more new supporters. I promise I will reply to all of you who have contacted me but please give me a few days to try and catch up :-) There will likely be more articles and stories coming over the weekend and prior to our departure.
Now, moving on to Tori who is still doing well and is thankfully staying healthy. She was very interested in the KUTV crew when they were over at our home and was quite calm and responsive. Today Tori, Maria and Grandma Schmanski travelled up to the PCMC (Primary Children's Medical Center) in Salt Lake City for a baclofen pump refill and phenol injections throughout her upper body. They did put Tori under anesthesia this time and rightly so as they injected into her arms, forearms, shoulders, pectorals and all over her back. Tori could not receive botox injections because it hasn't been 3 months since her last injections. Giving them to her prior to 3 months would be unhealthy and dangerous so we will wait until we return from China to get the botox injections. Usually phenol and botox injections are given in combination but having the phenol injections alone will provide Tori plenty of relief from her spasticity.
In closing tonight I've included some information below from Beike Biotechnology who is providing Tori and many others the stem cell treatments.
Thank you as always for your love, prayers and support.
The Schmanski Family
Our treatment approach is a holistic one. We do not only provide patients with stem cell transplants but we also put each patient into a complete rehabilitation program. Typically the treatment includes of four stem cell injections of over 10 million stem cells each over a 20 to 25 day period with rehabilitation 6 days per week. The stem cells are transfused into the patients via the bloodstream (Intravenous Transfusion) and into the Cerebral Spinal Fluid via an Epidural Catheter placed in the lumbar region of the spinal column. With each Stem Cell Transplant we also give the patients a transfusion of Neural Growth Factors to encourage the stem cells to find their targets and transform into new neurons.
In addition we also offer our adult clients the opportunity to have a Bone Marrow Transplant during their stay. This involves removing the patients own bone marrow, culturing, expanding and purifying the stem cells from it and then transfusing it back into the patient. This treatment is optional and does have an additional cost per procedure.
The rehabilitation program consists of a tailored mix of Physical Therapy, Occupational Therapy, Speech Therapy, Acupuncture, Manipulation, ADL (Activities of Daily Life) education and Chinese massage. It is this holistic approach combined with the incredible power of the stem cells that gives our clients the best chance for improvements. Not all of these therapies are right for all patients. An on-site evaluation will be done upon your arrival and at that time you and the rehabilitation specialists will determine what the right mix will be.
Hello and Happy New Year to all!!
Well the holidays are finally wrapping up down and we all could probably use a holiday from the holidays as well. Tori didn't get sick after all and has been doing pretty well. She has also had numerous visitors throughout the past four days. She spent much of her time in her wheelchair amongst the family in the kitchen and family room of the house. She has had two mild 'startle seizures' though and we're not sure on if there is anything else we can do for them as she is already on Keppra and Depakene which are core medications in preventing them. I found some information on Startle Epilepsy but don't believe that is what Tori has. It is more likely Hyperekplexia caused by the injury to her brainstem. We will continue to do our best NOT to startle her I guess.
Tori will have her baclofen pump refilled on Thursday and she will also have her next round of botox injections and she is certainly due for them. Tori's muscle tone and tightness continues to grow worse as the botox eventually wears off. Having this done prior to the trip to China is absolutely necessary and given the seizure and other challenges from the last injection, they are going to put her under anesthesia this time. The last botox injections were a little rough on everyone from Grandma Schmanski, Maria and the doctors and nurses doing the injections...
Tori's passport still isn't in hand but as far I am told there are no issues and it SHOULD be processed by Wednesday or Thursday of this week. Then we'll pay for the expedited within 24 hour visas. We will all just feel MUCH better when this is finalized and the needed passports and visas are in hand...
We hope and pray that the new year brings more miracles and continued progress for Tori as well as strength for all of us helping in and supporting her journey. While her progression has been painfully slow lately our love, devotion and dedication to her always remains. Our hopes are high on the China trip and the stem cell injections Tori will receive. A breakthrough in her progress would certainly be welcomed. Michael's trip is almost complete and I found these two updates (One and Two) on the Deering sisters who arrived in China in early December. After reading those promising articles I was brought back down to earth somewhat after reading another one about America's continued loss of ground in stem cell research ... "The United States also possesses something other countries cannot buy or steal: the breadth and depth of its scientific prowess." Absolutely agree!! So let's get off our moral high ground, get moving and start using this prowess!! This fantastic article from the United Kingdom is right on - "When George Bush banned funding he effectively put researchers into quarantine"... Thankfully there still is SOME privately funded stem cell research going on here at home at prestigious schools like Harvard.
In closing tonight and for the past year, we are truly blessed, humbled and grateful for all of the love, prayers, thoughts and support directed towards Tori and our family. Whether from friends, family, the community or from complete strangers, it DOES have an impact on ALL of us. I'm often still pleasantly surprised and sometimes moved when a stranger recognizes me, approaches and declares "I Pray 4 Tori every day". Please, please never stop doing that!! That includes the prayers as well as the approach and comments. This gives us strength and helps keep us all going as we encounter feelings of happiness and hope along with sadness and despair each and every day... It is very hard to not long for how it once was and most often this brings only pain and sorrow. Focusing our thoughts on Tori now, her healing and her recovery is much more productive and where our thoughts need to be. Each day is a gift.
The Schmanski Family
Tim, Maria, Tori, Whitney and Brendan
Tori and the rest of us have been recovering nicely from all of the Christmas activities although I had a bad case of the 24 hour flu all day Wednesday and Wednesday night... Upset stomach, muscle aches, head ache and the cold chills... It wasn't very fun but I feel much better today and I isolated myself from Tori so hopefully she won't or hasn't caught it...
I say 'hope she hasn't caught it' because Tori had a pretty rough Wednesday night as well... She was miserable throughout the night and we had to use lortab, xanax and zanaflex multiple times to try and calm her down. She was didn't sleep hardly at all so we are hoping she can catch up on that today.
The China trip planning continues each and every day. I have contacted each airline and have arranged for special assistance and they will be prepared for our arrival. I also have approval to bring Tori's liquid medications and food through the airport checkin. I don't know why but even with all of this preparation I'm not real confident we can make it through without any issues... Prepare as much as you can and expect the worst I guess and hopefully we will be pleasantly surprised. We shall see.
Tori's passport issue still is not resolved... I am in daily contact with the Passport Agency support center and currently there aren't any more known hold ups and the passport is being 'processed'. They won't give you a confirmed complete time either which is very frustrating... I've now been told if there are no further issues identified the passport should be sent sent anytime between now and next Tuesday... ARGH... Once we actually get her passport we can submit for our China visas. Most visa service companies advertise 3-5 business day turnarounds but I have found one that advertises 24 hour turnaround. We'll probably end up using it just so we can have everything in hand ASAP!!
Maria and Grandma Schmanski played alot of hand written card games with Tori Wednesday and Tori aced almost every question. Word games and even math problems were presented to her and she would acknowledge the correct answer by staring at it or lifting her head while staring at it. Grandma is convinced Tori can read and can read some French as well because they also played with French words at times.
Alright, that is about it for now.
Thank you all as always!!
Merry Christmas everyone!!
Tori had a couple of good and enjoyable days along with the rest of the the Schmanski family. She had plenty of company on Christmas Eve day as there were 18 people over at the house enjoying the day. Tori spent the time in her wheelchair watching all of the activities around her and sampling many of the goodies that were present. Here are a couple of pictures showing Tori enjoying herself and Tori opening presents with Whitney . Tori did very well on both days and was right in the mix of things each day.
Tori and I often play a game where I raise my right thumb and she matches by raising her right thumb. Then we touch them together and she mimics me by raising and lower her thumb as I do. Saturday night though she did exceptionally well by moving her arm, hand and thumb to where ever mine was placed. She was quite steady and she was very accurate in pressing her thumb against mine. She demonstrated great control and we hope for much more of it in the future.
We are very blessed and grateful for all of the love, prayers and support bestowed on Tori and our family each and every day by people from all over the world. As a family, we are dedicated and committed in our continued efforts to do everything humanly possible to aid in Tori's healing and recovery. We constantly aim to provide her the most caring and loving home environment and best quality of life that we possibly can. That will never end.
Tomorrow begins another week and we have much to do prior to our trip to China. Tori's passport and our visas are our top priorities of course. Hopefully we can resolve ALL of this by the end of the week and be all ready to go!!
A heartfelt THANK YOU to you all and please have a wonderful holiday season!!
The Schmanski Family
Tori continues to do well prior to her journey to China which is now 18 days away and counting. Her sleeping trends have been great, her awareness has been good and her anxiety levels have been manageable. However, Tori did have another seizure early Friday morning but that has really been the only issue she has had during the past three days. Maria walked into her room during the final moments of the seizure. It has another one where she was sleeping soundly and must have had something startle her. Those are very hard for us to catch unless we are in the room even when pulseox monitor is connected... The is NO DOUBT to whether she has has a seizure or not afterward because all of her limbs are completely loose and limp. I'm talking about 'spaghetti noodle' type limp in her arms, hands and fingers. You can move them into any position desired post seizure. It is really quite strange... Her brain must not be firing ANY signals to her muscles after a seizure for some reason.
Tori has had chocolate pudding, cheese, popsicles and even some spaghetti over the past few days. The visitors also continue to stop by. Guy also arrived Thursday evening from Boston for the holidays and we are excited to have him here!! :-) Tori spent Friday Saturday night in her wheelchair watching the Utah Jazz professional basketball team play with Grandpa Schmanski and I. They won another close one!! :-)
Now for the bad news update and my highest stress provider... Tori still DOESN'T have her passport... The Passport Agency received the doctor's letter stating she cannot sign the passport but now they want additional information. You see, when Tori was born the hospital lost her birth certificate so we went through a long process about 10 years ago to get her one. We had to get the official doctor's notes from the birth itself and had to also get several signed and notarized affidavits from birth witnesses which included myself. You MUST already have that information to actually get a birth certificate from the State of Utah and of course we had it. But for the US Government that isn't enough... They MUST have the additional information as well... LUCKILY, I kept that additional information in Tori's file and I have already sent it back via certified mail. With Christmas, the earliest we can get it now would be Wednesday or Thursday of next week. I call every single day for an update and if I hadn't called on Friday I would have never even known they need the additional information. Let's just say I am a bit frustrated at the moment... So once again I ask that PLEASE, PLEASE come through for us good ole' US Government...
On the stem cell news front, here is an article on open brain neural stem cell transplants . Again, I believe for Tori the research on this is far too early and experimental. But with positive results it wouldn't surprise me if it was commonplace within a few years. Here is one more on brain regeneration after a stroke . Strokes typically cause an anoxic brain injury like Tori's due to lack of oxygen to the brain but Tori's injury unfortunately is on the severe side of the spectrum... Hopefully some stem cell treatments will help promote her brain regeneration.
Thank you all as always,
I've been struggling a bit lately in keeping up on Tori's updates... Things are quite busy with Christmas around the corner, kids getting out of school, work obligations before the holiday break and of course planning a 32 day trip to China with Tori.
The good news is that there aren't really any negative Tori issues to report on. She is still doing pretty well in that she is sleeping nicely at night, agitated usually only once per day, active and aware during her therapies and most importantly keeping free of any illness!! She did well in her ST session with Meredyth today. They did the usual card and object selection exercises combined with more mouth exercises. Tori ate a large quantity of cotton candy during the session as well. She also has been having snacks with the family each night. Yogurt, chocolate pudding, chicken soup, pepsi and popsicles just to name a few items. She is still consuming very small amounts but she has been swallowing smoothly and coughing rarely. In reading the updates from many other stem cell recipients it appears that mouth control, swallowing and eating are some of the prime improvement areas. We shall see.
Tori has had alot of visitors stop by lately as holiday gifts and such are getting dropped off. I won't begin to list all of you but I wanted to thank you all none the less.
We are having a slight issue on the China trip logistics but I hope it is resolved by tomorrow. We took Tori into the post office to submit her passport paperwork and I had to obviously sign her form for her since she cannot. The postal agent then placed a note with the submission and assured me it would be fine. We chose to pay extra and expedite the passport in two weeks. Well... Two weeks later I get a passport letter stating the Tori must sign the form... ARGH!!! Why didn't they just send us that a day after they received the submission?!?! Why wait until the two weeks is over?!?! Sheesh... So I had Tori's doctor write a letter describing Tori's injury and why she can't sign and I then sent it back to them on Monday. I'm waiting and tracking for the certified mail to be sent back to us HOPEFULLY tomorrow with Tori's passport included. We still need to get our visas for this trip so time is of essence here and we can't afford any more delays... So PLEASE come through for us good ole' US Government...
Other than the passport obstacle, the other China planning issues are going fine. We've got a list and are checking it twice :-) We are planning to do some practice packing over the holiday break.
Here is an encouraging article on David Aldrich's China trip and progress since. More hope!! Here is another one on Public misinformation about stem cell issues . And finally an article on Linda Maher who proclaims this - "So far so good. Everything is going great for both of us - I just feel so much better in general since I came back from China – and that kind of result you just can’t put a price on."
Thank you for the continued prayers and support,
Tori was much more comfortable over the weekend than she was the three days prior. She didn't seem to have any of the painful grimaces and cries that she had previously. We can't explain what was causing her the pain at this point but we are happy it is gone for the moment. All of us were able to catch up on some sleep and Tori led the charge by sleeping all night and well into each morning. We were very grateful for this so thank you Tori :-)
Tori watched alot of Christmas movies over the weekend and Whitney and Brendan spent much of their time outside playing in all of the snow. We had about 5" on Saturday and another 5" on Sunday. It is very cold now as well so I'm sure we will have a white Christmas this year.
Tori spent more time in her wheelchair as she usually does on the weekends. She watched Maria wrap presents during Sunday afternoon. She also had a sponge bath and hair washing today which she totally enjoyed as normal.
Tomorrow begins another week of activities for Tori and we are looking forward to a whole new list of activities when we arrive in China. Dave has been updating Michael's site during their trip and for the most part everything is going smoothly. We are learning a great deal from their trip and have made several changes because of it.
Here is an article on how Neural Stem Cells help the brain self repair.
Thank you all for your continued prayers and support,