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