Stem cell transplant update!

We have a date: Tuesday, August 25. We'll be flying to Raleigh on Sunday, getting Max checked out on Monday at Duke, then the infusion will happen Tuesday, with a followup with a neurologist on Wednesday.

The amazing Jenn, Jude's mom, recently mentioned stem cell therapy research from Stanford School of Medicine on her blog that shows how promising it can be, check it out. Still, as you know, I am not getting my hopes up too high, a defense mechanism I've learned over the years.

I haven't yet started talking about this with Max or Sabrina, but I'm going to be straight up: I'll tell Max he's going on a trip to the doctor, and I'll tell Sabrina that she's going to stay with our friends while Max is there. My friend Hedy pointed out that Sabrina shouldn't be too disappointed missing a trip to the doctor, but you just never know with her—she gets jealous when we give Max any extra attention. Yesterday I was showing Max in the mirror that he'd lost another tooth and she kept shoving her face in front of it to look at herself. She is so four.

I'm not getting my hopes up too high about the stem cell transplant. But I am getting awfully excited.

Here's to a weekend filled with good things for all of us!


iStock graphic/Paul Rosado

Max is getting stem cell therapy (and other news on slithery stuff)

So, a brief recap on where things stood with stem cell therapy: Weeks ago, I contacted the people at Duke University doing the trial. The place where we'd stored Max's cord blood sent a sample over to Duke. Then we had to get a few vials of blood drawn from Max and mail those, so they could make sure that it all matched.

I got word today: Everything is good to go. The infusion could happen in the next couple of months, I'll know by the end of this week.

I can't believe it. I can't believe it. I can't believe it.

Like I've said, I'm not hoping for miracles here. I'd be grateful for even a little improvement. But, bottom line, I am not expecting anything, this is all still so experimental.

In other news, I walked in from work tonight to find this on the kitchen counter:



In case you can't tell, that's a bunch of caterpillars crawling in a glass jar. We bought the kids a Live Butterfly Garden; you send away a pre-addressed postcard that comes with the kit to order the caterpillars. Once they develop into chrysalides (within seven to ten days), you move them into the mini habitat.

Sounds like a good learning experience, right? It is. Only thing, I forgot how much I HATE caterpillars. When I was a kid, we spent our summers in the country. One year, I must have been ten or so, there was a gypsy moth caterpillar infestation. I still remember seeing the bulging nests in the trees filled with ominous blackness—ultimately, they killed the trees—and then, eventually, caterpillars underfoot everywhere.

Creepy.

I am definitely going to have to find a new place for them besides the kitchen counter.

A world of possibilities

This weekend, the future seemed filled with possibilities.

Here's Max, playing with his new tennis racket, and Sabrina, showing off her mastery of hissy fits.

Lately, Max is into all sorts of new things—baseball, tennis, swimming. As he's become more sure-footed and has gained better trunk control, he's more willing to try sports. Grasping things is still a major challenge, even with his left hand (the more functional one) but hopefully, better hand control will also come along. One thing I have learned over the years is that, when it comes to Max, there is no time limit for accomplishments. In toddlerhood, when everything seemed laser-focused on developmental this and developmental that, it was a hard thing to accept. But now, I know that we have time.

Last week, I told you there's a possibility we might be able to get Max a stem-cell infusion. Here's what Max's pediatric neurologist e-mailed me when I asked him about the program at Duke University:

"I am quite aware of the program and have had some kids go down to participate. I have not recommended it to anyone yet because I am waiting for results in the kids I treat. I have not seen anything bad, and perhaps a bit of good. So, if they judge his cord blood 'eligible' there would not appear to be any harm in trying it, but there are not any clear parameters that I have seen to judge the effectiveness of the treatment."

Of course, I e-mailed back right away to ask what he meant by "a bit of good," and this is what he said:

"As for the good, a bit more attention and focus, and a slight improvement in motor capacity, but perhaps it is too early. If you look at the cases that have been reviewed in the media, perhaps there is more to be expected with time. The numbers are not sufficient yet, however."

No matter, we are ready and willing to try this. This week, Duke is mailing us a kit to get some blood samples from Max, they need to make sure it's still a good match with the cord blood we've banked.

In case you are wondering, the procedure would cost around $10,000. I haven't yet called the insurance company, I highly doubt they will cover this as it is experimental and, as you know, I have battled them to get them to pay just for speech therapy (and still am).

Dave remembered that when he called the cord blood bank after Max was born, he was told that the sample they had gotten was excellent, filled with viable stem cells.

Yes, the world seemed filled with possibilities this weekend. What possibilities have you been dreaming of for your own child lately?

Natasha Richardson dies from her brain injury

I don't know much about Natasha Richardson; I've never seen any of the movies she's been in. But when I first heard that she'd gotten hurt during a ski accident on Monday, I was consumed by the story. What had she hit her head on? What were her symptoms? What type of injury was it? What part of her brain was hurt? Anytime I hear about someone sustaining a brain injury, I want to know more. I relate. Max had serious brain damage at birth from a stroke, a bilateral one that affected both sides of his brain.

It seems that after the actress's accident, according to a statement released by the Canadian resort where she'd been skiing, she did not show any visible sign of injury. An hour later, she wasn't feeling well. A day later, she was pronounced brain dead. Two days later, she was dead.

This is tragic. It's also a serious reminder to me of how unpredictable brain injuries are. Doctors know a lot about the brain, but they don't know much, much more. The brain largely remains a mystery, especially when it comes to treating trauma. That was particularly hard for me to accept during the first couple of weeks after Max was born. I wanted the doctors in the NICU to help heal my baby's brain. Out of my head with grief, I screamed things like, "WHY CAN'T YOU DO SOMETHING FOR HIM?" Not possible.

This is just one reason why stem-cell research is so important, and why it's an amazing thing that Obama has lifted the ban on federal funding for it.

Guess what Dave is doing this weekend? Uh-huh: He's going skiing. He'll be on a business trip in Canada and plans to hit Whistler (not where Richardson was). I'm not going to stop him, but I am making him buy a helmet. You hardly ever see any adult skiers wearing them; maybe now that will change.

Tonight, my heart goes out to Natasha Richardson's family.