After hearing from Kate (THANK YOU, KATE!) that Duke University has a stem-cell injection clinical trial, I got in touch with them. Today, I learned that they would be willing to consider Max as a candidate.
Back when I was pregnant, my lovable worrywort of a friend, Wendy, told me she'd done cord-blood banking for her baby. I figured if Wendy did it, I should, as I am also a worrywort (and just as lovable, I hope). So I signed up with Cryo-cell, one of a handful of cord-blood banks out there. There was an initial fee (can't recall how much); storage costs us $95 a year per kid (we did it for Sabrina, too).
I never imagined that we might actually need the cord blood. Never imagined that my baby could have a stroke at birth. Yet that's what happened, and I have a beautiful little boy with cerebral palsy. There are no miracle cures, but there is this possibility.
In a nutshell, Duke isn't sure cord blood is helping out kids with CP but, based on work they've done in general with genetic diseases of the brain and also animal studies, they believe it can help. The injections of cord blood are not risky, and while Max might not like getting an IV, he will deal. I've been Googling around, and it seems that some kids with CP who've gotten the cord blood injections have shown improvement.
I plan to run all of this by our pediatric neurologist. To me, this seems to fall into the camp of treatments that can't hurt and might help, and Dave and I fall firmly in that camp. Here's an article from Duke on what they've been doing.
The next steps are to get a copy of the report on Max's cord blood from Cryo-cell for Duke to review, to make sure there are enough cells and that the unit was frozen properly. If this works out, we'll have Max's blood drawn to make sure it matches up well with the banked cord blood. Then that would get shipped to Duke, and then we'll have to ship ourselves to Duke.
My deepest wish is that a stem-cell infusion could help bring along Max's speech. Although if it could also enable him to better use his hands then, well....
I don't want to fantasize too much here. Who knows, for one reason or another, Max may not be a candidate for an injection.
But, heck, I am going off to sleep now and letting myself dream.
Photo by nushuz
I'll be praying, and thinking lovely thoughts. That is great news. Please keep us posted. God (and higher power) bless
ReplyDeleteHoly $#!+, Ellen, that is just so...FANTASTIC!!!!! How great that you have the cord blood for your babies too! I hope so much that Max gets into the study and that it works like a charm!
ReplyDeleteWOW! This is so exciting! Such...POTENTIAL!! I hope it's realized! I can't wait to hear more!
Wow. That is amazing. I have everything crossed for you. I wish we had stored cord blood but wasn't possible due to prematurity and emergency.
ReplyDeleteEllen that's fantastic! Did you know that Alice had this done at Duke? Contact me if you want to chat, I'd be happy to talk about the whole process with you!
ReplyDeleteYippeeee!
I wish I had saved cord blood too - but even if I don't have that, Cici does have an identical twin, so that's a possibility for stem cell stuff in the future, I hope. That is so exciting, for many reasons! Please keep us posted and I really hope he gets in - these clinical trials are so important!
ReplyDeleteWOW! That is such awesome news!!!! Praying all the details work out!
ReplyDeleteHoooray! I'm in the can't hurt and might help camp too. So glad you guys are doing this and can't wait to hear all about it.
ReplyDeleteHow exciting! I have heard positive things about the study at Duke. Praying Max is accepted and that all goes well. And I say, dream away!
ReplyDeleteWow, let us know~
ReplyDeleteI think that is fantastic news. I remember everyone thought we were crazy for doing Selective Dorsal Rhizotomy with Regan....and to this day, i still say it is the best thing we have ever done for her despite what her doctors wanted us to do. Listen to your heart kiddo.....you won't go wrong.
ReplyDeleteI am THRILLED to hear it!
ReplyDeleteThis is the BEST.NEWS.EVER.
ReplyDeleteSo happy for you!
I have a gut feeling that this is going to improve Max's quality of life...in more than one way.
Yippeeeeee!!!!!!!!!!!!
Yay! That's so awesome!
ReplyDeleteBelieve me, Andy and I have kicked ourselves more than once for not saving Elijah's - and if blessed with more kiddos, you'd better believe we'll be saving it then.
So glad that you have the opportunity to do this for Max! I've heard such awesome stories in reference to Duke's trial. I think they've had some really amazing results. Yipee! So excited to see what it'll do for Max!
Wow, that is really exciting!!!! I always hear about CP and stem cell therapy, but it will be SO good to "know" someone who may actually go through it. Please keep us updated! I'll certainly say prayers that it all works out!
ReplyDeleteOh my gosh! How exciting!
ReplyDeleteThat's incredibly exciting, Ellen! I wish you and Max all the best with this.
ReplyDeleteThanks for posting this topic, Ellen.
ReplyDeleteI started posting on feeding tonight - you wanted to know.
I have to admit, it was a little difficult for me to read this. Difficult not for my absolute excitement for Max, for the possibilities that his future may hold if only they will allow him in. Not for the admiration that I have for you and your hubs for having the saved the cords....but for my own regrets. My single regret.
ReplyDeleteAs you know, we have a new diagnosis. You may not know that I / we had a plan...it's all on hold now.
For you, for Max, I am thrilled! Absolutely. I know that it will work for him. I KNOW it! I can't wait to hear more and I am praying that he is accepted.
I have a son that will be 10 in October. He has mixed CP. Please let me know how things go. The doctors have never been able to pinpoint Chandler's root cause for his CP. His birth was very normal. I will be praying for you guys.
ReplyDeletemy sister is cerebral palsy patient. I wish that, my sister culd apply the clinical trial. How we apply the clinical trial ?
ReplyDeleteMy son has cerebral palsy and i have been trying to find out how to get him in a study at Duke. We live about an hour and a half away from there, at Fort Bragg. Who do I contact to find out if he is a candidate?
ReplyDelete