Wednesday, July 8, 2009

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.


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


  1. AMAZING NEWS! I'm SO happy for Max (and you of course).

    I think it would be so very difficult not to be hopeful in that situation. As you know, I've done a ton of research in that area and I am sure, in my heart, that you will see some positive changes.

    Yeah Max!

  2. Ellen,
    WOW! That is FREAKING awesome! That is sooo great that you were able to store his C.B.! Here's to HOPE! Was born and raised just a little ways from Durham. Faith has been there to the Ped. Brain Tumor Center for her biopsy almost 2 yrs ago. The hospital is awesome and very high tech! We will be praying for a miracle for Max and your famiy! Candace

  3. I remember the gypsy moth infestation!! We lived in CT at the time. We had to have recess indoors all that spring because the playground was absolutely covered with them. At night, you could hear them gross.

    Congratulations for you and Max! If this goes well for him , Max could be a trailblazer for more stem cell research/therapy! This is a BIG DEAL!!! Please continue to keep us posted.

  4. Will be thinking positive thoughts!!

    We had the ant farm thing years ago.

  5. That's wonderful, Ellen! Congratulations!!

    I'm funny, I love creepy things. It's my job to pluck all the caterpillars from our garden :) We'll have to do something like that, I think Alice would like watching the metamorphosis.

    Good luck, Ellen, with all of the Duke stuff. I know you'll keep us posted :)

  6. Wonderful news on the stem cell therapy! How great that you had the foresight to store Max's cord blood (it wasn't even an option when my daughter was born). I'll be hoping and praying that Max benefits from the treatments.

  7. UUUGH butterflies...I braved it two yrs in a row. You can check out our daily photos here

    It so grossed me out...I am NOT a bug person at all.

    I am so glad to hear about the stem cell. Can't wait to learn more.

  8. Ellen, I am so excited for you guys! I can't wait to see how stem cell therapy works for Max. We ended up donating Daniel's cord blood since we didn't know at the time about his stroke, but we plan to bank his baby teeth in hopes that the stem cells may one day help him. Good luck to you all!

  9. Great news on the stem cell front! Cannot wait to hear how it goes.

  10. Someone contacted me about this yesterday asking if I stored Jude's cord blood, I did not :( because we just could not afford it at the time. I asked if they can do this procedure based on donated cord blood, do you know? A girl that was in the ventricumegaly board with us had this done, and her results have been amazing. She had the same severe brain damage Jude did even with bilateral Schiz. If this does work and even helps them walk a bit, etc I think it's truly amazing!!!

  11. Oh! that is wonderful news!


Thanks for sharing!

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