For The Best Result….
March 18th, 2009
3-18-09
Hello everybody. Today started out the same as any other, with PT, OT & TCM (traditional chinese massage)….Joey did really good today.
As you all know, we have been waiting to find out more about the last SCT and also the results of Joey’s MRI. At 4:00 p.m. Diana (our new coordinator) came to our room and said that Dr. Jo wanted to speak with me, so I left Joey in the room and followed Diana to another room where Dr. Jo and another english speaking coordinator was waiting. Dr. Jo went over Joey’s MRI and although there is really nothing to be seriously concerned about, she has come to the conclusion that the curvature of Joeys spine (scoliosis) has probably kept the stem cells from traveling as well as they are supposed to. Stem cells are very thick and very sticky….So here are the options:
1) If Joey insists on waiting for the IV SCT, there is no guarantee that it will even be done. They still have not gathered enough of this type of stem cells for an IV treatment. It could possibly take another two weeks……we fly home in two weeks.
The hospital lab has just received in a ‘higher quality’ batch of stem cells, which has to be administered via lumbar puncture….
2) If Joey will agree to one last lumbar puncture, the lab will prepare these ‘high quality’ stem cells so that they are not as thick and sticky (this is the reason for so much of Joey’s pain after each transplant). This process will also let the stem cells travel to the central nervous system the way they are supposed to….
I asked Dr. Jo which stem cell treatment she thought would have the best result for Joey’s condition, she replied that the lumbar puncture would definitely have the best results because the stem cells are transplanted directly into the spinal cord which carries them directly to the central nervous system. They will insert the needle a little bit higher than before, which will also allow the stem cells to bypass one of the major curves in his spine.
After talking for a bit more about these options, they asked me to help explain this to Joey so he would understand and hopefully not be so disappointed…..We walked back to our room and Joey knew right away there was news about the next treatment. We layed it all out on the table and left the decision up to him. Clearly he was disappointed that the IV SCT wasn’t going to be ready in time so after thinking about the pros, the cons and the possibility of feeling that same horrible pain, he chose to do the lumbar puncture and is praying that it doesn’t hurt as badly. This will be the last time either way….I am extremely proud of Joey for being so brave. He deserves the best possible outcome so EVERYBODY PLEASE SAY ONE MORE SPECIAL PRAYER FOR HIM.
The last SCT will be tomorrow at about 2:00 p.m.
Entry Filed under: ataxia,Uncategorized
10 Comments Add your own
1. poppy | March 18th, 2009 at 9:43 pm
Poppy & I will be praying for you. You have family & friends all praying for you all over. Remember what I told you, even in Israel. Ju Ju & Poppy know you are going to do just Great. We love you, You are on the home streach now!!
2. Darla | March 18th, 2009 at 10:03 pm
Dana, You guys hang in there. Cant wait to hear how it all goes. Keep us posted. Love, Darla
3. Kristen Custer | March 18th, 2009 at 10:21 pm
Joey,
I will be thinking about you tomorrow. Stay strong, just as you have been. I am so proud of you for being such a fighter through this whole process!
With Love,
Kristen
4. JUDY | March 18th, 2009 at 10:33 pm
Keep Strong and Keep Faith. We are all praying that you will do fine.
5. anne beard | March 18th, 2009 at 10:43 pm
The word Epiphany that we had to write in today for our security word neans change, like when you have an Epiphany and believe
more in Gods pupose for us and I feel that was a sign and I am praying so hard for you all and whatever it takes when you get home I will help you with any of the exercises and I think its great that Rick is building things in the garage that’ s what my Dad did when my Mom had a terrible accident at 62 and they said she would never walk again and that was in 1969, well she did and she drove her own car until she was over 80 and she lived until she was 92 GOOOOOOOOOOOOOOOOO Joey you can do this
In Christ Name Love you both Anne
6. Donna Tanner | March 19th, 2009 at 4:05 am
You are both truly amazing people, hope only for the best, accept nothing more!!! love you…
7. Gail Montgomery | March 19th, 2009 at 4:52 am
Joey, here you are on the home stretch with one more treatment to go. Stick to your guns, grit your teeth and get er done. Easy for me to say, I know. I wish you the least pain and the most result. We are all cheering for you Joey, and Dana’s voice carries such confidence and conviction. Break on through to the other side.
Peace,
Gail
8. patty & scott hodde | March 19th, 2009 at 9:48 am
good luck kid, the last one….kick FA’s ass…
9. Jill Costanzo | July 25th, 2009 at 5:53 am
My daughter has FA and I am looking at any and all options out there, would you please contact me regarding your treatments…thank you.
10. JosephP | February 11th, 2010 at 2:32 am
Hi Jill
Sorry it has taken me so long to reply. I am Joey’s mother, Dana. We flew to Beijing China for the stem cell treatments i had been researching. We were there for 7 weeks and Joey had a total of 7 treatments (1 per week). My son was 24 when we made the trip to China and he has been confined to a wheelchair since he was 18. Even though he is still in a wheelchair, he is much stronger than he was before the treatments. He goes to physical therapy 3 times a week and can now stand (with help) holding up his own weight. He could not do that before our trip to China. He feels better, his eyesight is better and his hand coordination is better. But most importantly, the stem cell treatments have extended his life. I would recommend this to anyone who suffers with a life shortening, central nervous system disorder.
If you have any more questions please contact me at: ddavis@carltonusa.com
Dana Davis Pomykal
a.k.a. Joey’s mom
Leave a Comment
Some HTML allowed:
<a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>
Trackback this post | Subscribe to the comments via RSS Feed