Wordless Wednesday: Siblings

If you want words and more pictures, go here.

Big Brother

Fletcher is a big brother! You can meet his little sister here.

So Mad I Could... Twitter?

I made my first tweet, and it was in anger. Well, not anger as much as frustration, really.

Trevor recorded a "Special Investigation" segment on CNN about stem cells. Central to the segment was a family with a terminally ill daughter who will be treated in August at the same facility at which Fletcher received treatment. Well, as usual, the story focused on these desperate parents throwing all logic out the window by traveling to another country for medical treatment (gasp!). That is not the part that frustrated me. All stories about stem cells have this dramatic bent and I have gotten used to it.

The thing that got to me was that the anchor said that the family told her they will be using EMBRYONIC stem cells in China and then the piece goes on to interview a stem cell researcher in Temple, Texas (I think he was affiliated with Texas A&M) who made a big deal about using embryonic stem cells and how that is bad and how treatment with adult cells is yielding good results and is available in the US. And that going to other countries (while he admits he doesn't know squat about the programs in such countries) is a categorically BAD idea.

Those following this blog carefully already know why I am frustrated: Beike uses ADULT stem cells NOT embryonic. So while the piece made it look like pursuing the very program we pursued was a bad idea, if you really know the facts, the on-air expert was in a sense advocating for the program (although unknowingly, which is another aspect to my frustration, the fact that no doctors in the US even bother to really investigate these foreign programs they bash).

Then the piece goes on to interview some random (and, according to the vibe given off by the piece, bogus) doctor that has a stem cell practice in Peru, further damaging the credibility of Beike.

In the CNN anchor's defense, I suppose she just took the parents word at face value and they were the ones confusing embryonic and adult stem cells (which can be a confusing concept) but this was an investigative piece, so don't you think she could have done some actual, ahem, investigating? Also, they said they contacted Beike and had not gotten a response, so I suppose some of the fault lays on them as well. Beike doesn't seem to have a polished media liaison at the ready, which I think is actually doing them a disservice, but also points to the fact that they are a medical lab, not snake oil salesmen, and are more interested in the science.

So, when the CNN anchor solicited comments via twitter, I thought it was time to tweet. I have an account that I opened to follow a couple of fellow bloggers, but had never even checked it. I went to the help section and found out about "reply" tweets and I was set. I resisted the urge to be confrontational and tell her to stop sensationalizing everything and get her facts straight and instead just told her that she should be advised that Beike in fact uses adult and not embryonic stem cells. I feel better now, even though there is a good chance she won't even see the message since I'm not sure I got her twitter address correct (does capitalization matter?).

To end on a positive note, check out the video of Baby Chewbacca I just posted in my summary of Fletcher's sixth stem cell treatment. Too funny!

We're Back

We got back on Tuesday, but had to get a little creative with our travel arrangements. I have so many things to post, but am focusing right now on getting ready for Fletcher's little sister, who will be here in less than two weeks at the latest!

Once I have had some time to regroup I will resume posting, filling you in on the last treatment, some technical aspects of the stem cell infusions, and sharing some photos of all the fun we had along the way.

I can honestly say that I have no regrets about the trip and regardless of clinical improvements, I am glad we did it.

More to come...

Happy Birthday Trevor

Another patient's father figured out a way for me to access the blog, but I can't post pictures or videos or fix the layout. So, I will try to put up some basic posts and jazz them up a bit when I get home.

In the meantime I would like to wish a very Happy Birthday to my husband! Johnny helped me order a cake and we celebrated this afternoon with the other families on the unit. A group of us are also planning to go out tonight to a local restaurant, which, from what I have heard, gives a whole new meaning to fresh seafood (Mike, it is the restaurant you ate at with Simon).

Pictures and video to come.

Sixth Treatment

Fletcher received his sixth stem cell treatment this morning, his fifth via spinal delivery. The doctors decided to go back to square one in terms of sedation and he received only di.azepam. They also took into consideration what I suggested about the anti-allergen, and since he had already received five treatments with no evidence of allergic reaction, they decided his was low-risk and proceeded without the de.xamet.hasone, but will be monitoring him extra carefully for any signs of an allergic reaction. Pre-treatment prep wasn’t too bad. He cried as they placed the IV, but quickly recovered. The administration of the di.azepam was via IV, so no enemas or IM shots and he was nice and loopy going into the treatment room. We’ve noticed that after the administration of the di.azepam he kind of makes noises like a drugged-up baby Chewbacca…

What do you think?

Trevor listened at the door during the procedure while I chose the effective method of hair-drying to once again distract me from what was going on next door. He was calm as he returned and has been pretty good ever since. Maria-Josephina and her family let us borrow a Baby Einstein dvd and Trevor and Fletcher are laying quietly in the crib watching it (I did mention the crib in the room is the size of a twin bed). Only one more treatment to go!

[Scene: Same small hospital room, a little more than five hours later.] Trevor is bending the rules just a touch and holding Fletcher (who is still parallel to the floor) on his lap while we count down the final few minutes of bed-rest. Fletcher initially took a nap for about two hours, but wasn’t too happy when he woke up. He ate, fussed, screamed, choked, spit-up, calmed—lather, rinse, repeat—for the couple of hours. He seemed to be in some pain, so we gave him some Tylenol and finally, after our modified bed-rest plan in daddy’s lap, he settled in for another hour nap while Trevor watches Chinese platform diving on mute. Oh yes, we lead a glamorous, jet-setting life, don’t we.

Technical Difficulties

I am having a problem accessing Blogger from China. So I have asked my mom, the reluctant commenter and lover of weird trees, to post this message to let everyone know that unless Blogger access is restored in the next few days (and I am not holding my breath) I will be typing my posts in Word and publishing them once we return to the States at the end of the month. We hope to be home by May 27th, so look for a new post sometime around then. In the meantime, I am emailed your comments, so feel free to post some to cheer us on in the homestretch.

p.s. Fletcher is doing fine with his treatment today, so only one more to go!