3 Months Post ASCT

Update on progress. May 23rd. 3 months post ASCT.


Kenneth continues to show progress. Nothing big at this point. Cognitive, fine motor and tone have shown the most improvement. Cognitively he just continues to amaze us with his skills. Although those skills could be acquired from learning in kindergarten but you never can tell. He always has done well with vocabulary and reading and is currently reading at a first grade level. He still has opportunities with a few letters like “S” and “Z”. He continues to talk, talk, and talk. Fine motor skills continue to improve. He uses his pinchers more and more when tasking with small objects instead of “palming”. He is getting better control of bicycling with his legs. Tone, huge improvement. He has not been on baclofen since February. No sign of putting him back on it either. A few weeks ago his tone seemed tighter but then loosened up again. Therapists are all very happy with Kenneth’s improvements. All in all, very pleased thus far with what and where he is in his progress.

Reyna continues to show some progress. Not as quick or as much as I would like, but some is better than none. I think her improvement is mostly cognitive. Focus, thought processing, organizational skills and balance have shown improvement. Nothing significant or perhaps very significant depending on how you look at it. From my readings, it looks like TBI patients will show slower progress if any. She believes that she has had no changes but I can see changes. She is like the energizer bunny; she just keeps going and going, from one project to the next. Pre ASCT she would not complete the projects. She would have 5 projects going on at the same time, not completing them and being frustrated. Post ASCT, she completes her projects then goes on to the next. We have seen very, very little physical improvement. I.e. use of her right hand and tone. Phone texting continues as earlier noted. Understanding that she had a great deal of damage and injury to her brain affecting those abilities, it may need more time. We are pleased with her progress thus far and hoping for continued improvement.

Like many situations, 5 steps forward – 2 back then 5 forward. Post ASCT, the forward steps are just more significant. 10 forward, 3 back then 10 forward.

What we all do, what we all strive for, why we do all the things we do can be summed up in a story told by Zig Ziglar in “How to Get What You Want”. Zig talks of a boy named David Latzy(spelling) who had CP. I find it an appropriate story for why we are all here. Finally found it…

David

1st Doctors Visit Recap

Met with Kenneth's doctor today. It is noted that Kenneth's tone has decreased and we will not put him back on baclofen. Kenneth's tone is lesser than prior to ASCT while on baclofen. Range of motion has improved a lot. They do believe (although no scientific proof) that baclofen may interfere with the neuro development and process of ASCT. Also, we have decided to refit Kenneth with hinged AFO’s.

Spoke with Kenneth’s teachers and para today. All three have stated that Kenneth is more calm, relaxed, and starting to use his pincher fingers in doing tasks as trying to write and picking up small objects. They feel that Kenneth has made progress and improvements since ASCT.

Summing up an improvement cognitively and reduced tone and fine motor skill development.

I can’t wait to see what’s next and what time will bring us. I find this "scientifically not proven" procedure very interesting and very rewarding.

David

Dominic and Harrison Update

Link to Denver 9 news article on the two Denver Boys that went to Xcell last year.

http://www.9news.com/news/article.as...4257&catid=188

Awesome improvement. We will see both of the boys and families this spring at adaptive baseball in Lakewood.

33 Day Update

Hard to believe that 33 days have past. We have been waiting to update after an appointment with Kenneth's doctor. We decided to postpone the appointment a few more weeks out from the treatment.
Kenneth has been a lot more talkative and focused. Perhaps one can call it cognitive improvements. Pre treatment he was on 1.5ml x3 daily of baclofen. We decided to take him off prior to treatment. As of today, we have not put him back on and his tone has reduced. Pre treatment he was ready for another surgery in his legs, now with the reduction of his tone while not on the baclofen, it will be interesting to hear what the rehab surgeon has to say. His therapists agree that he is more cognitive and has a lot less tone than pre treatment while on the baclofen. He is also more willing to do tasks and therapy walks in his walker. His thumbs are less pronounced inward and while making fists. Less compulsive and involuntary movements.

My wife Reyna has shown changes. Pre treatment she had a "deer in the headlight" look and would say "what" as she first would not understand or unclear of what was said. Also, she would have multiple projects going on around the house half completed. I have not seen this since we have been back from treatment. She seems a lot more focused and on the ball. Just a lot sharper and on a mission around the house or while shopping. Her balance has improved as well. Also her texting has improved. In the past she would send me a text message that would be sum what garbled. I would have to call and do the yes no questions to get the answer. Now they have been precise, i.e. " buy tortillas yogart bread milk".

Strange how these things just can change in a short time. We still have a long way to go, but I am waiting to see what the next few months bring us.

I will update after a visit with the doctor. These doctors are the ones that have been following and tracking other ASCT kids.

Our improvements seem to be consistent with others. Here is a cut out of an email from a parents doctor out east. East from us that is..

" Thank you for all the useful information. We were at Children's Hospital of Philadelphia on Thursday, our muscle skeleton doctor has had three kids go to Germany and three kids participate in the Duke program - what she stated is that the younger the child, the more results they are seeing in both cognitive and motor skills, the older children are seeing most improvement in cognitive areas. All good news to me- all of the kids had marked improvement."

Other than that, still looking forward to new things that will arise.

David

Mrs Taylor and Classmates from Kenneth

Hi everyone! I miss you all and thank you for being my friend. Cassie and I have spent 2 weeks together thinking of you. Germany was fun. I liked the plane. I liked the hotel. I liked having pina coladas with my mom and dad. They also had good pizza too! Yummy!
I am feeling much better. Me and my dad play late at night and then we play early in the morning. I like playing with my daddy at 230 in the morning. I get to play with the remote control for the TV.

I can not wait to see everybody! I will see you Monday
Love and your friend Kenneth and Cassie.

Germany and Xcell wrap up

For those that have interests in Xcell, these are my tid bits and process as to how we experienced them.
1. Apply on line. Fill in medical history.
2. A Xcell consultant assigned to your region will contact you. USA clients will have a USA consultant, Japan will have a Japan consultant. Makes sense as we all speak different languages around the world. The consultant will request copies of medical documents and a current MRI or other. The consultant communicates with the doctors in Germany. The consultant will come back with an approval or no approval for treatment. This process is the most time consuming. If you need to make MRI appointments, medical appointments etc.
3. Once approved, you tell the consultant what dates you want to start treatments. The consultant gets back to you on treatment dates and times. You will have a deadline to tell the consultant: Yes, these are my flight times and this is how I will pay for treatment. I recommend International Bank Draft. Our bank did not know what IBD was till I insisted that they need to figure it out. Which they did. Do not make flight and travel plans till they tell you to.
4. Ask your consultant your questions. The consultant will get you your answers. Communication with the doctors is ok as we witnessed with others.
5. The consultant will send emails with a bunch of attachments. The attachments are forms that you will be filling out once you arrive to the clinic. Do your homework and read them. While at the clinic, things go fast and you will be able to fill out the forms quickly and comfortably.
6. You will have the option to use Xcell transportation or your own. You will need to communicate to the consultant your transportation plans. They charged 150 Euros, which we thought was priced high at 220 US. After riding in a taxi to our hotel, the math turned out to favor the Xcell transportation.
7. The consultant emails dates, times, and a scenario of what to expect. Our consultant gave us a scenario from getting of the plane, airport checkpoints, looking for our driver, to the “T”. He was precise.
8. Stick with the consultant! We had a change in our consultant mid way through the process and stayed in communication with the new consultant. They did a good job through the transition.
9. The consultant stays with you up to the day you leave and give’s you a farewell email with contact information and dates. Till that point, stay with the consultant.
10. Done with the consultant. The rest of the communication will be directly with the clinic in Germany.

Very simple and smooth. The longest time taken is making appointments and getting MRI’s completed, last minute follow up surgeries, etc. It took us about 3 months. Remembering that I have had 2 family members to get completed.

The next is all in Germany.
Day 1 for children is meeting with the anesthesiologist. Day 2 is the bone marrow extraction. Day 3 rest and wait anticipating outcome of cells. Day 3 you will have time to tour and play. Day 4 return of stem cells via LP. Day 5 and 6 rest and drink plenty of fluids. Kenneth and Reyna were not up to much but to hang around the hotel. Day 7 return home.

I suggest that you request for extra Vomex. Vomex is the nausea vomiting medication. Take it prior to take off for the flight home. Critical…. We learned the hard way.

We enjoyed our hotel. Lots of space. If you like spending 3+days lying around a small hotel room, you will have lots of choices. We did struggle with finding a hotel that accepted 4 to a room. We meet a Mother with her daughter that stayed at Mercer and found the room very small and uncomfortable. We spent almost 2 weeks looking for a hotel. Google earth works well. We used Google earth so much that we felt like we knew where everything was when we arrived. DVD’s and more DVD’s. Hotel TV is like antenna channels all in German.

Meals. Germany is pretty much closed on Sundays. Sundays for the majority is arrival day. Shopping and grocery stores are closed. They do have gas stations with snack/sandwich items that are open. I would suggest packing up some of those add hot water meals. First day arrival supplements that will hold you over till you can get to a restaurant or the hotel opens its restaurant. Take it from grandma, pack up foods. After a 16 hour day flying, those little meals came in handy till we figured out what we were doing. When you’re exhausted, this can be challenging. The driver told us a story of a family that found them selves taking a taxi to McDonalds and back. It cost them well over 50 dollars. The hotel food is expensive. We did do some grocery shopping which was very economical. Our driver also stopped at the gas station for us so that we could pick up additional snacks, sodas etc.. Between the clinic and hotel. If you stay at a hotel with a continental breakfast, make sure there is a restaurant or store near by.

Take smaller bills like 20’s with you. Our hotel would not exchange 100’s to Euros. The banks will take 100’s to exchange.

The last and most important is my 6 P’s. Proper Planning Prevents Piss Poor Performance. Get ahead of your planning and arrangements prior to leaving. Last minute things could happen and make the leave a stressful one. I.e. I had a sinus infection that turned out to be a root canal and sinus infection the week before we left. On top of that, I do work as well as all of you. I think this made our departure pretty stress free with everything covered 2-3 weeks before leaving. As we all know traveling with special needs is and can be stressful. Better to be having a martini at midnight before the flight instead of running around trying to get things together.

I think that’s it. I hope this helps. I am sure all experiences will differ.

I invite any one and everyone to add to this. I know one thing for sure; I wish I had this kind of information prior to leaving. That is why I have written.

Few days and almost back to normal

Second day back home and almost back to normal. Reyna adjusted quickly to time and space. Kenneth has continued to wake at 230am. Kenneth had a good day. Headaches are gone, appetite is coming back, and sleeping habits have not come back. We tried to get him back on schedule with no success. Perhaps Wednesday we will get him to nap. Less fatigue, more just laying around behaviors. Almost there!

Picture of Kenneth and Reyna having popcorn. They have been eating more and more.

Day 8 Back HOME! Sweet Home

You know, there is nothing like home. Your own bed, your own toilet, your own TV and in English, and and and.

The day started at 5am. Both Kenneth and Reyna were up with full life. We had breakfast and I started unpacking as they rested on the couch. Kenneth started to complain about headaches and discomforts about noon. He took few cat naps then really crashed out at 430pm. He did wake up till 230am this morning ready to rock and roll. He climbed up on the recliner in our room and watched TV till about 5am. Nothing like a cold bottle of juice, commander of the recliner and captain of the remote. He was on top of the world. For the most part, Kenneth continued with mild headaches and fatigue throughout the day.

Reyna was up and around all day. Finishing what I started with the remaining laundry. No discomforts or complaints. Just complaints that I did not finish my chores. As for me, I hit a wall at noon and pretty much cat napped with Kenneth. Both Reyna and I crashed at about 10pm. I am very tired myself.

Must remember that family members need rest as well. At least double the rest…

We will see how both fair today. Kenneth does have mild discomforts with a few complaints of a headache. After all, for him, its noon…

Have a great day. I will wrap up our Xcell adventure in the next day or two. Some thoughts on the positives/negatives/opportunities.

Day 7 Germany Return Home

Saturday Day 6 was just another relax day. Kenneth and Reyna slept pretty much through the night. Grandma Jeannine and I stayed up late watching the affect/no affect of the tsunami hitting Hawaii. We are from Hawaii originally so we were interested.

Morning came at 5am to feed the family before heading to the airport. We were picked up at 7am. Everything went well through the checkpoints with mild discomfort from Kenneth.

Prior to take off Reyna started vomiting. The vomiting continued throughout the trip to Atlanta on about every half hour. She could not hold anything down. For the majority of the trip, she was vomiting stomach lining. When we arrived at Atlanta, she felt better. The vomiting started up again as she could not hold anything down. The trip to Denver was very good. She only vomited at landing. For sure, she was my hero and was a trooper.

Kenneth did well for the most part. He does have a nissen wrap so nothing came out. He had a few episodes but for the most part was a trooper. Both legs home he did well.

We all got home at 10pm. I did give them some vomiting meds at home. We did some hydration fluids and they pretty much slept though the night till 5am.

One thing to remember…. If no vomiting occurs after procedure, it does not mean they will not vomit for the flight home. ASK for extra vomex!! Vomex is there vomiting med. That way you have them on you for your return trip. Don’t tell Reyna, I may not live to tell more stories.

Overall all good. We talked about a theory. No pain, no gain. When you think about very little discomfort, you begin to question if the treatment worked or will work. Not that we wanted to invite any discomfort, but a questioning thought.

I got behind a day on posting but will catch up this morning.

Day 6 Germany

Another day of rest for both Reyna and Kenneth. Reyna and I did walk to the corner gas station to pick up some soda, candy and munchies. Very slow walk but successful. Reyna had mild discomfort with back pain. I do believe that the pain was due from both the LP and hotel bed. I struggled getting up every morning with back pain. Not the most comfortable beds I have laid to rest on. Kenneth experience mild discomfort throughout the day.
Not much to say but rest and fluids. Appetites were tough to manage. They did not want to drink or eat much. We just had to insist.
We are more than ready to come home.. I know I am as I will need some good catch up sleep. I do not care what they say, but I will be able to catch up sleep..
More later

Day 5 Germany

Today was Friday. The day after the implantation. Kenneth was up and around pretty much all night. The way that Kenneth moves around in bed on a regular basis, this time around he was met with little to mild discomfort. After a long night, both Kenneth and Reyna experienced little to mild discomfort throughout the day. They just rested all day watching cartoons in German. Near mid to late day, they started to perk up a bit. Now it's evening and both are in bed for the moment... Hopefully for the "entire" night. Other than that, all as expected and we wait to see what Saturday brings us. Perhaps we will be able to do some light sight seeing. We will see how both Reyna and Kenneth feel tomorrow.

Picture taking was met with resistance, so we have none to post today. Understandable considering they both looked pretty wiped out..

More later as we have a couple more days left before heading home.

Day 4 Germany

Well, it's complete. Both Reyna and Kenneth are asleep tonight after LP implantation this afternoon. The details are:
Reyna had 20 vials of bone marrow removed. Then implanted 5.5 ml BMC solution containing 8,167,500 CD 34 cells with a Vitality of 80%.
Kenneth Had 7 vials of bone marrow removed. Then implanted 4.0 ml BMC solution (high concentration) containing 7,180,000 CD 34 cells with a vitality of 71.6%.

Ideal Vitality that the center shoots for is 80% +. Minimum cells that they will put back is close to 2 million.

Reyna had some discomfort of back pain this evening, but now is ok. Kenneth acted as if nothing happened till the evening with very little discomfort. Other than that, a few days of relaxation with hopes they feel good in the morning, then off to the airport for our return home to Colorado.

Still very pleased and impressed with Xcell. Earlier concern we had was that Xcell did not return as much cells. Not the case. They put in what they get from the bone marrow..

The whole process from start (application) to finish (implanted cells) was great. Last step is for the driver to pick us up and take us to the airport.

Now its up to therapies and the ol' mighty. And the Cells to do their magic of course..

David

Day 3 Germany

It was a Wednesday all day today. A day free to wonder and rest. Reyna felt a little week and dizzy in the morning. After a good lunch Reyna was back to normal. We went into Neuss and had lunch and did some grocery shopping. We spent 16 euros and got about 3 days of food. This was better than a 30 dollar plate of spaghetti from the hotel. Kenneth taking in a Pina Colada at the hotel bar.

So far so good and all doing well.

Photo's day 2

Reyna and the doctor who did her extraction.
Kenneth, Grandma Jeannine and Reyna in Kenneth's recovery room.
Kenneth and Cassie, school class mascot.
Kenneth and Reyna back at the hotel eating pretzels as the couch was sliding folding outward. Like nothing happened 2 hours previous.

Day 2 Germany

Tuesday was crash day and bone marrow extraction day. I guess it was catch up on sleep and rest day along with treatment. All went very well.

We were picked up at 1130am for appointments at 12pm. They had changed Reyna's appointment to match up with Kenneth's. Very nice of them. Both pretty much had their extractions at the same time.

As for Reyna, I went into the room with her during the procedure. She took about 1.5 hours. Slow bleed I guess. They had to relocate the needle several times to get the amount of bone marrow needed. They ended with 21 vials. I believe each vial was about 15-20ml. I will ask on Thursday. Pretty much a painless procedure, or at least Reyna did not jump or scream. She did say she felt pain when the Doctor asked, "ok, I am putting in the needle, do you feel it"? and she said yes when in fact, he did not start yet. Funny. I think the biggest pain she felt was when the protective sheet was removed (blanket with adhesive circling the operation area). Other than that, very smooth and painless procedure. When Reyna was finished, we met up with Kenneth. At that point, Kenneth was ready to leave.

As for Kenneth, Grandma Jeannine assisted in taking him in to the room. With in about 45 minutes Kenneth was finished and in the recovery room. Doctors reported that all went very well. The communication with the recovery needed clarity. Perhaps between waiting for Reyna, Kenneth being finished so quickly that we were not on the same page. End result was that Kenneth was in the recovery room longer than needed. Could of been waiting for Reyna but we were having coffee in another office talking with Denis from New York with his son. No harm.

We cannot truly evaluate Xcell over another clinic of the same, having not been to another stem cell clinic. We can only compare to hospitals and clinics in the states. We believe that in professionalism, efficiency, and cleanliness exceeded our expectation and in some cases US standards.

The drivers were not able to return us to the hotel. We were given a taxi voucher and a taxi was called. This was a good thing so that we could see what the cost of a taxi was to compare with the Xcell transportation. We figured that the Xcell transportation was cheaper. Xcell charged 150 euro, which is about $220 US. Seems like too much at first, but after seeing families in and out of taxis with chair aid equipment and the one way fair cost from the clinic to the hotel of 19.60 euros, the cheaper, more convenient, and stress free route was the Xcell transportation. Although staying in Neuss, the distance is relative to staying in Dusseldorf. Taxi fair would of exceeded the 150 and probably 200 + euros.

Hotel Pictures

Kenneth the first night hanging in the living room with Cassie, school mascot.


Grandma Jeannine, Reyna and Kenneth(bundled behind Reyna) hanging in the room doing some reading and studing.

Reyna a picture of the two beds in a seperate room. This is where Kenneth and I hung out till 3am playing..

I think the Hotel was a good choice. Priced cheaper than the ones in town and 2-3 times the space.

Day 1 Germany

Waiting at the Xcell Center after meeting with one of the Doctors. Talking with Doctor Therapist of Neuro Cell Stimulation. Sabine Berndsen.










We were picked up by the Xcell driver and went to the clinic. We filled out all the forms for Kenneth. We met with The neuro doctor and reviewed the forms then met with the anesthesia doctor. Shortly after, we were transported to ISST-Unna for a Neuro Cell Stimulation evaluation. The doctor/therapist showed us exercises for Kenneth and Reyna on our return. They gave us some equipment for facial/mouth stimulation. Learned quite a bit and video taped the meeting. Shortly after we returned to the hotel.

It was very interesting. Quick, precise, and 1,2,3. They have not asked for money yet... It did say at time of procedure we would have to pay. Other than that, we are impressed. The drivers are very friendly, nice, and helpful. On the return to the hotel, we stopped off to pick up sodas, milk and snacks. So for so good and impressed. They have it together and are organized so far. Clinic/Hospital is very, very clean.

Our morning was spent walking to the grocery store. It started to rain. We got thru it and survived as it stopped for our return trip back to the hotel.

Tomorrow is Tuesday and it will be bone marrow extraction day for both Reyna and Kenneth. Pick up time will be at 1130am with a procedure starting at 12pm.

Arrived in Germany Sunday 2/21

Kenneth and Cassie, class mascot at the airport in Denver.

Both legs to Dusseldorf went very well. Looked like Kenneth has done this before. Near the end of the second leg of 8 hours Kenneth got a little board and was ready to get out. After nearing a 16 hour day, can't blame him as I had my parachute on and was ready to go out as well.

We arrived, went through the check points and was greeted with a Xcell driver when we got out of customs. Driver was very nice, took us to our hotel, discussed future transportation etc, and left. Arrived at the hotel at 930am. Check in times are at 2pm. With out question, we were handed our key card and we went to our room. Awesome! For the price and research that we did, we are very pleased with the room and service from the hotel. The pictures and ratings do not come close to what we have. It is located in a business area, so its relatively quite. Plenty of room, one bedroom suite. We all took naps and walked around the hotel. Kenneth had a pina colada (virgin) with mom and a very nice, tall, cold Heiniken for dad. I do not drink much at all, but a beer today after a year felt and tasted great.

One thing to take note. Sunday in Germany is pretty much "closed". If you do not plan on bringing snacks and or at least some foods from home, make sure you save your peanuts from the plane cause that will be your dinner.... Kinda like that "cheap flyer" commercial. Although I have been there before, just not good with a family. Not enough peanuts... That is if your hotel does not have a bar or restuarant. The bar at the hotel was open and offered some burgers that we were more than happy to indulge and feast. We plan to do some grocery shopping Monday before Kenneths appointment.

Kenneth is checking out his new territory. Into everything, etc.

Very smooth and nice day today. More tomorrow. Thanks to everyone, Mrs. Taylor, and classmates!
david

5 Days and counting!!

Well, the time is here. 5 days till victory. i spoke to Prasun and his wife today(parents of Rocky), they were in Germany and just consulted with the doctors there. They seemed pleased so far from what they saw. We hope for the best in treatment and travel. We hope to meet them while we are there on the 22nd.
It's been a trying week so far. I lost a member of my management team to another store, my right hand manager, I got a sinus infection/tooth ache that turned into a Root Canal and a sinus infection at weeks end... Today is Monday night and I feel fantastic! 90 hours of work left and then we fly..
Thank the Gods for teaching me the 6 P's. Proper Planning Prevents Piss Poor Performance... All was set and together for the trip well in advance so that I have no last minute worries. Just to pack Friday night...
At this point, all sickie feelings from the family are gone. I guess it was better to be sick last week than while in Germany.
God bless to all, and see you in Germany.
David

Kenneth and Cocoa

Kenneth and his school pal Cocoa(the horse). School project was to have Cocoa write in a journal of his visit with us. Unfortunately, it snowed.. Cocoa did not seem too sad as he looked out the window to watch the snow. Kenneth spent his time in the stander, computer time and then painting his bird feeder. Nothing like indoor activities with a classmate from school. Cocoa was well behaved.

Relaxant and Baclofen

Setting a new appointment to consult with the doctors here. We want to know about a relaxant for Kenneth and his continued use of Baclofen. I think the adults are set for our relaxant.. As for a 5 year old on a 16 hour trip, it would be good to know.

A start and beginning to our blog