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.