Thursday, November 5, 2009

WHY WAIT?

So for everyone that reads Joey's blog, this post is not directly about him.
So if you don't want to read it click off NOW.

I was talking to my mom today and the question (or maybe more like comment) was brought up. WHY NOT WAIT? Ok let me go back a little and explain.

I am entertaining the idea of taking Joey to Costa Rica for stem cell therapy. During my constant research on SCT I have seen that the more frequent and the closer together you do SCT the better results. I know many people are saying to themselves, "BUT, you haven't really seen a lot of results with Joey from China? So why Costa Rica?" Well yes we have seen good results with Joey. His eyesight is so much better, his cognitive awareness and muscle tone is much better and it has only been 2 1/2 months. Why Costa Rica, well I know two children that have gone and they have had great results like Joey. Costa Rica is also only 1 week instead of 4 weeks. The cost is relatively the same. I also don't need a second person to help me. I can go by myself.

So the comment or question is why not wait till the US is doing it? Well first of all nothing is guaranteed. The US has not began trials on donor cells yet. Who knows when they will begin. Also who knows how long the trial will take (2-5 years). Then, what is their protocol on SCT going to be. Also what will be the cost. Not free, Insurance won't pay for it.

So why wait for something that is not guaranteed when I can do it NOW and help Joey now. I don't believe SCT will bring the old Joey back, however I do believe that he will live a much better quality of life.

So please everyone, I would love to hear your opinions. Positive or Negative. Give it to me.

The Journey is Everything!

4 comments:

Anonymous said...

I have heard similar ideas - that the gains you achieved from the first round of stem cell therapy can be furthered and often exceeded with follow-up visits. I agree with you there.

Secondly, I have heard good things about using the same protocol/method/clinic for the second round as the first. The reason being that there are so many types of cells out there, processing methods, treatment protocols, etc. that if you saw improvement from the first round, and you can be more certain that the second round will see similar results.

Why not go with the more sure thing - especially with children who are still developing, I think it's great thing to give them all the help you can.

I've been following your blog for some time and are happy to see little Joey's progress. Keep it up.

-TG

Suzanne said...

GO FOR IT...you got my support.

PrayforNathan.org said...

That's funny that you wrote this today, I just talked to a friend who talked to your friend Pam about stem cells in CR, and she was trying to convince me to go with her in Feb or March. We did stem cells in DR with Rader but I can't say I saw any notable improvements. Before I give up completely on stem cells, though, I feel like I should give it 1 last shot, and CR seems to be a good choice. Mackenie seems to have had a great response. Maybe we'll end up there at the same time :-) I feel the same way you do - I want to do EVERYTHING possible, and it's best to do it now, while they're young and there's a good chance for improvement. Ultimately I feel it's just and issue of ROI - if you feel that the cost of CR has enough ROI vs other treatments you could be doing for him, then it would definitely be worth it.

Amy said...

I say do it!! I have been considering SCT for my Emma too!! I am also considering Costa Rica because of the two children that I know who have gone there (likely the same two you know.) I am friends with Caradie and so I follow Charlie, Mackenzie, and Joey too. I am impressed with all of their results!!!

I know people who have done two different places and gotten great results from both.

If you know Costa Rica to be safe, and it seems to be based on the above folks. Like me, I say why not?? For us, it is the money thing, but I would go tomorrow if had the $$$!!!