Tim Schmanski's blog

Hi there,

Tori has successfully completed her first week here at the Xiaoshan Hospital in Hangzhou, China!! Only three more weeks left at this point and we'll probably start to count the days as we are really beginning to miss Whitney, Brendan, Grandpa Paul, Grandma Sandy and our dog, Tinker's the Yorkie... Even though we speak with them and see them through Skype video phone conferencing multiple times per day, it's just not quite enough. We also have a camera set up at home so we can watch all of the activity in the family room and kitchen. Grandma?? We have noticed Brendan sneaking into the fridge for snacks quite often - you are so busted buddy!! ;-)

Alright, now on to Tori who is making great improvements on the PT (Physical Therapy) front. In watching James aggressively massage and stretch Tori for an hour and half each day I realize that we have not done nearly enough for Tori in this area... The flexibility improvements we have seen in Tori's arms, wrists, fingers, knees and ankles have been very impressive and that is only after a week's worth of effort by James who we might just try to sneak out of the country and take home with us. Just kidding on that one but boy do I wish!! :-) Maria and I are admittedly far too passive when we perform PT on Tori because it's very hard for us to cause her the pain that is needed for progression and it unfortunately shows in the deterioration of Tori's body... We are truly sorry Tori. It is certainly not an issue for James though who clearly knows how to push her to the pain threshold then ease nicely back again. Tori often grimaces and at times will cry out at the top of her lungs!! We tell Tori she can hit James whenever she wishes and I swear at times that right arm is headed his way but it needs a little more control and velocity to be effective :-) James mentioned that Tori and Michael, who was just here as well, are the only two that have made him really sweat during a PT session because each of them is so strong and it takes great effort to move various parts of their bodies. James will also be rearranging Tori's PT schedule next week so he can have even more time with her. Thank you James.

Hello again,

During Tuesday Tori had more PT (Physical Therapy), Acupuncture and EMS (Electronic Muscle Stimulation) and at 4:45pm Wednesday afternoon, she went into a sterile surgical room for her first stem cell treatment. It went very smoothly as Tori was given some Valium once she entered the room and the procedure was done after about 45 minutes. She then had to lie flat on her back for at least 6 hours and to accomplish this we positioned her DVD player right above her so she watched movies while looking up towards the ceiling :-)

Now that Tori has officially received her first stem cells and NGF (Nerve Growth Factor) via intrathecal injection into the spinal canal and intravenously as well, I believe it is time for some biological and scientific detail on exactly what she is receiving. Below is an accurate summary and you can select the hyperlinked words for additional detail on them. In highly over simplified terms, we are attempting to build new brain matter in Tori to replace the damaged or dead brain matter that currently exists so that overall, Tori will have more brain matter to work and heal with.

Tori has received 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 stem 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.

Good evening everyone,

Maria, Tori and I are now adapting to an entirely new and very foreign culture. We are discovering all of the language, food, currency, transportation, habits and mannerisms of the Chinese people in general. I'll provide more details on my observations and the specific differences seen in future updates. The time change has also been interesting and Maria still is the most challenged but she is slowly waking up later and later each morning. Today she awoke at 5:30am but said she was up for a little while before that. Tori and I haven't had much problems on the sleeping front and I would dare say we are adapted already.

Tori has been adjusting well to her new nurses and doctors. Her feedings are also fully back to normal at this point. Her daily schedule is now as follows:

8:30am - Team inspection. Doctors and nurses visit Tori, take her temperature, check her skin, discuss progress and any issues, ask questions, answer questions, etc..

10:30am-11:30am - Physical Therapy Treatment with James who is the rehabilitation doctor.

11:00am-1:00pm - Lunch time.

3:30pm-4:30pm - Acupuncture Treatment and EMS (Electronic Muscle Stimulation) with James.

This is repeated every day except Sunday when there are no treatments for Tori. Tori will be getting her first Stem Cell injection with NGF (Nerve Growth Factor) Wednesday afternoon. The subsequent 4 remaining injection schedules will then be determined as well.

Today Tori had her first PT (Physical Therapy) session and James twisted, turned, massaged and stretched almost every part of her body. Tori did very well for most of it and watched James quite closely. She did let out some good cries and screams when James would hit the stretching threshold. This will be very beneficial for Tori as she hasn't had this level of PT sessions for months since our insurance company quit covering it...

It is my understanding that many of the articles written about Tori and her journey for stem cell treatment are being picked up by many other newspapers across the USA and even the world. My mother has reported many calls at my home from people interested and needing information on Tori's stem cell treatment. Again, I truly believe and hope that Tori's journey will benefit so many others who need help the most. My mother has been directing all inquiries to Tori's website and to the Beike Biotech China and Beike Biotech Home websites where Tori's picture and one of her articles are front page. There is a Contact link on each of the websites where information can be requested. I am also willing to assist in any way I can and can be contacted through email at admin@pray4tori.com.

In the USA, the Stem Cell Bill once again passed through the house but fell short of the two thirds of votes needed to override George Bush's unfortunate and upcoming second veto... There is an abundance of media available on this and I'm asking that you please, please contact your local congressman and inform them of your support for federal funding of various stem cell research efforts. Millions of suffering people including Tori can only benefit from the scientific results obtained.

Here is another excellent editorial on the issue where Tori's journey is used as a reference:

Stem-cell promise: Veto of funding for research would be mistake

Thank you for your support,

The Schmanski Family

Hello again,

First off I want to wish Maria a HAPPY BIRTHDAY!! Someday I hope to take her again on a real, month long VACATION as a birthday gift!! When I told her it was her birthday today she didn't believe me so I had to remind her again that we are 15 hours AHEAD of Utah time. So I was eventually able to convince her she is one year older now :-)

Today Tori had her blood samples drawn and also had her rehabilitation therapy evaluation completed by James and other team members. She slept just as well as Maria and I did during Friday night and early Saturday morning. She did have some slight vomiting issues as we began feeding her the liquid Jevity through her G-Tube once again. She needed to adjust to the feedings once more so we slowed the standard rate of 110ml per hour to 90ml per hour and then built her up gradually afterward. The plan worked as she is now keeping everything down just fine.

We wheeled her to the rehabilitation room around 9:00am this morning where James and team did complete range of motion measurements on ALL of Tori's joints. They had her laying on a padded table and were twisting, turning and stretching her in every direction. Tori took it all in stride and only let out a couple of cries during extreme stretching. Now that the measurements have been taken James will really begin to go to work on her and I'm sure Tori won't be as happy then... It is all for the best though and Tori really hasn't had aggressive physical therapy for months because Maria and I tend to take it much easier on her when we do it. When the team asked if Tori was responsive I said of course and told her to "open her mouth and stick out your tongue". They were quite impressed when Tori obliged so I asked her for a "thumbs up" and a "close your eyes" to show them a little more. Tori wouldn't "use her voice" however and I told them I'm expecting her to do much better on that front after the stem cell treatments. I captured the evaluation on video tape and took many pictures as well. Hopefully I can make some of them available on the site but I'm finding the internet speed here to be quite limited at times... But we thankfully do have Skype and a VOIP phone running and are able to talk to and see video of everyone back at the house!! :-)

Hello all,

Thank you Guy for the Journey Updates created on the site during our travel. We did arrive safely in Hangzhou on Friday, January 12th around noon and we were very, very exhausted... I've finally finished a detailed look at our travel time that consumed 39 hours total which you can view by selecting 'read more' below. The joys of international travel with a 100% dependent child proved to be quite exiting to say the least.

After our arrival on Friday we were also introduced to the team of physicians, nurses and therapists. Dr. Shi leads the team and I'll introduce you to the others in future updates. I provided them a detailed history on Tori's accident, injuries, medications and subsequent issues and I gave them over 50 pages of medical records to review as well. I am excited and anxious to hear the results of their evaluation and subsequent plans for Tori's stem cell treatments and rehabilitation program during her stay. In the early evening Tori also had another startle seizure and Dr. Shi rushed in to witness it. They aren't very fun to witness as Tori will roll her eyes back and forth and begin frothing at the mouth... Dr. Shi had a EEG done on Tori afterward while she remained in her bed. Maria, Tori and I then proceeded to sleep from 9:00pm to 8:00am Saturday morning.

As we were just arriving in China for Tori's stem cell treatment, Dave and his son Michael were just returning home after their 35 day stay. We greatly hope both Tori and Michael see vast imporvements in their recoveries.

Thank you for your continued love, prayers and support,

Tim, Maria, Tori, Whitney and Brendan

Select 'read more' below for the complete Travel Time Journal

Travel Time Journal

I typed most of this detailed update 30,000 feet above China and at 2:00am Hangzhou, China time which correlates to 12:00pm in Orem, Utah. It also marks the 30 hour travel time mark since we left our home in Orem and since we have 5 hours of flight time left plus road travel time I’m betting we’ll hit close to 40 hours… A long time for sure but with all things considered, this adventure has gone exceptionally smooth albeit with great sleep deprivation for Maria and I least. Tori is the one doing all of the sleeping and that is plain perfect and according to plan!! :-)

They made it!!!

Tim will be posting soon we are sure. Whitney is talking to Tim and Maria right now...

Good night everyone,
-Guy

Thanks for adding the updates Guy!! I toured the Washington Dulles airport and I am now borrowing some wireless network bandwidth from outside the NorthWest Airlines World Club Lounge - Thanks Northwest!! :-)

Guy was accurate in describing the trip so far. Tori did exceptionally wellon the first leg which is by far the smallest of the three. She cried slightly at one point and was agitated slightly at another. She spend her time watching 'Shrek 2' and 'Over the Hedge' on the DVD player.

I wanted to take the time to thank Delta airlines and the SLC TSA agents who were very, very accommodating and professional and made the first stage of our trip actually quite uneventful and almost pleasant. Arranging the personal assistance well in advance is paying dividends and I only wish I could do that when I travel alone on business!! :-)

We made it through the SLC TSA just fine and they secured our carry on luggage at the gate and let us enter the Delta Crown Room as well so we could change Tori and administer her medications. We then boarded first and basically Maria and I picked Tori up and placed her in seat 1B because it didn't have the full bulkhead so Tori could extend her legs out fully and place them on a travel bag we brought along specifically for that purpose. Again, Delta was very helpful and let me pick which seat would work the best. Thanks again to Cory and the rest of the Delta personnel who assisted us.

Once we arrived at the Washington Dulles airport we received the same great treatment as the assistant helped with all of our luggage and guided us to the Air France Lounge where we remain at the moment. It is not looking well at the moment for getting in the earlier, 6:00pm EST flight so we'll probably need to hang tight until the 10:00pm EST flight. Oh well, the lounge is comfortable and the Air France personnel even said we could stay inside even when they closed it to board other flights. So thank you to Air France as well!!

Alright, that is all for now and I'll try and post an update later and when we arrive in Paris if possible. It will be tight in Paris though since we have less than a two hour layover...

Hello again,

Only 8 hours left until Tori, Maria and I are airborne!! Yes, Tori's passport and our visas DID ARRIVE at 10:00am Tuesday morning as anticipated!! That was quite a relief. We have packed 8 very large and heavy bags, 3 packed to the maximum carry on bags and 3 backpacks that will count as our 'handbags' though we won't let them pick them up ;-) The van and car are filled already with the majority of them and we'll be on the road to the airport at 5:30am and we'll need to be up in about 3 hours to make that arrival time.

We are as prepared for the journey as much as we possibly can be. Now we just need to complete the travel time safely and hopefully comfortably. The well wishing, numerous and supportive phone calls, emails, instant messages, comments on this site, visitors to our home and new donations as well have just been tremendous and so greatly appreciated!! It really is all so wonderful and it certainly inspires, drives and helps us move forward in helping Tori on her journey. With so much love, prayers and support for Tori she is surely going to make great and progressive strides in her recovery and hopefully break new ground for many others in similar situations to follow a stem cell treatment path. Our post stem cell treatment goals for Tori are for her to gain more control of her body particularly her arms and hands, more consistent chewing and swallowing so she can eventually have full meals, more awareness and stamina, more methods of effective communication like actually saying 'yes' or 'no' and finally for all of us - seeing that beautiful and radiant smile of Tori's once again. That alone would mean the world to us.

Tori has done great during the past couple of days even with all of the commotion revolving around her. Meredyth arrived today for Tori's speech therapy just in time to get on FoxTV 13 tonight :-) Thank you for everything you do for Tori Meredyth!! Tori also started selecting her card exercise answers by lifting her right hand and pointing or directing it towards the correct card. We hadn't seen that until this past Monday so hopefully it is another good sign of things to come. She is still very accurate in all of her answers. Lastly, when 4 of Tori's dance friends came to the house to wish her well I tested her once more. They surrounded her bed and I asked her where 'Annie' was and she immediately turned her head right and looked at her. Then I said "Here's Abi standing next to me" even though it was really Nicole. She looked at Nicole, then looked at me like I was crazy and finally turned her head right an looked straight at Abi. Yes Tori, we know you are in there and we want to help you come out of that unfortunately damaged body of your's... It will take some or more than likely alot of time, love and effort but it WILL HAPPEN!!

Alright, I guess I'll try and force myself to sleep for 3 hours. I'm not sure how successful I'll be because my adrenaline is running high at the moment. Maria and Tori have been sleeping for a couple of hours and that is most important anyway. During the travel time and stay in Hangzhou I will try and provide updates when I can but they might be sporadic for a little while. We shall see.

Thank you all so much for being here and for sharing and contributing in Tori's journey. I mean that from the bottom of my heart as your positive impact on Tori and our family truly cannot be measured.

The Schmanski Family
Tim, Maria, Tori, Whitney, Brendan along with Grandpa Paul and Grandma Sandy

Tori on FOX13 TV Utah tonight at 9:00pm for all of you in Utah. I'll post a link to the segment when FOX13 TV uploads it later to their site.

Thank you!!

-Tim