Tuesday, April 21, 2009

China or Bust

Most of you know, or have figured out from the comments to my previous posts, that the overseas trip to which I have been alluding is to China. I am typing this out on the plane en route and hope to be able to post it from our hotel room.

I have just finished my dinner of grilled New York sirloin steak with pepper rub, red wine and vegetable sauce, roasted portabella mushrooms, potatoes au gratin and grilled green and white asparagus, which I finished off with an assortment of petite pastries (after passing on the fruit and cheese cart… how am I to have room from my Skysnacks ™, mid-flight refreshment of Taiwanese-style noodle soup with prawn paired with raspberry brulee cake, or my pre-arrival light meal of seasonal fruit , pastries, and choice of swiss cheese omelet or congee?). Let me tell you, first class is the only way to go on a 14-plus hour flight.

Unfortunately, in order to fly first-class sacrifices had to be made. But not by me. Continental does not allow children to fly in first class as passriders (that is, non-revenue airline employee passengers), so Trevor and Fletcher are in coach while I get to kick my complimentary-sock-adorned feet up at the front of the plane. In my defense, I offered to stay in coach with Fletcher and give Trevor the first-class seat, but he insisted I take it, and who am I to protest?

Our travels did not get off to a great start as we were bumped from our scheduled flight yesterday from KC to Newark in favor of a Continental pilot trying to get home from Hawaii (you have to get creative with your itinerary when you passride because it is all standby). However everything worked out in the end because we got to spend an extra night at home instead of a night at the Newark Airport Hampton Inn and still made the same flight from Newark to Shanghai that we originally planned to take.

So, enough about the journey, you want to hear about the destination, right?

After over a year of research, calling around, hand-wringing, deliberation, and prayer, Trevor and I decided to purse donor umbilical cord blood stem cell infusions with Fletcher. There is a domestic program at Duke where children with CP can have infusions from their own cord blood if banked at birth, but we did not bank Fletcher’s (we were too concerned with keeping both he and I alive to even think about banking the cord blood, but even if we had, with my high blood pressure and clotted placenta, they probably would not have been able to use the blood anyway… at least that is how I make myself feel better about it). Fletcher is on a waiting list at Duke when the time comes that they expand the clinical trial to include infusions from sibling cord blood, which is why we aren’t hesitating to bank Smykeeny Baby’s cord blood. But the nurse I spoke with at Duke didn’t think the program will be expanded for another couple of years at the earliest, and even then, they may want to give Fletcher immunosuppressant drugs before the infusion which is not without its own inherent risks.

And, while I do believe that seeking treatment in China today is somewhat premature, and that so much more will be discovered about stem cells in the next five to ten years, given Fletcher’s age and the nature of neuroplasticity, I feel like now is the time to try this therapy with him. We have chosen to travel to China because the treatment offered by Beike Biotech seems like the most comprehensive, and safe, program available. I will be writing more details about it in the ensuing month, but I can tell you now that we are hopeful, yet realistic, about the improvements Fletcher stands to gain through this treatment. So, check back frequently for updates as the hospital’s internet allows. In the meantime, if, in addition to the Beike hyperlink above, you would like to read more, including blogs from current and former patients, check out www.stemcellschina.com.


Emily said...

Well if it makes you feel better I've heard that it's rarely possible to save the cord blood of micros because of the circumstances surrounding delivery and there not being enough cord blood.

Bird said...

SO excited for you guys and hoping that you'll give us lots of updates. We wanted to save Charlie's cord blood, but somehow it never came up and then BAM! he was here.

I'm with you and have high hopes for the future of stem cells, but also wonder about doing it when they're younger. Can't wait to see how this goes for you.

Cara and i will miss you next month!

CISSP said...

New York Sirloin? Potatoes au gratin? I can't wait until you try fish head soup and boneless chicken feet once you make it to Hangzhou!

caryanne said...

THis is all very exciting. And yes, Emily is correct. We wanted to donate the cord blood from our boys but since they arrived so early, there wasn't enough.

I can't wait to hear updates.

Adam and Andrew said...

How exciting! I can't wait to hear more about it and happy traveling to all of you!

Ellen said...

I can't wait to hear how things go for you guys. We actually do have Max's cord blood saved. It's weird, though, we don't know what shape the placenta is in. PLUS I have two blood-clotting mutations that both of the kids have, too, so I wonder if it is even usable...

You deserved that first-class trip!

Jadellsmom said...

I think it is such a blessing that you are able to do this for your son.I am so excited for you all and I don't even know you! I have wanted to look into stem cell infusions for my son but had no clue where to begin, but reading your blog has given me a lot of insight. You and your family will be in my prayers as you go through this journey. God Bless.