Friday, July 17, 2009

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

16 comments:

  1. Ellen I know you don't want to get those hopes up, but I have to say I am getting my hopes up for you. I am, I just can't help it, and I am so excited for you. I want this to work SO MUCH!!!!!!!!

    Because, you know, I have my selfish reasons!! See, if Max shows some serious improvement, it's only a matter of time before those docs figure out a way to make this and other procedures work without cord blood for not just kids, but for adults, too. I know a few people who could use some "healing power!"

    I don't know what you've got planned for Sabrina, but maybe it might not be a bad idea to create an "adventure" for her---instead of saying " Max is going to the doctor and you're going to stay with friends" she might like it better if she's going to play with so-and-so, have a sleepover and go to the movies, a whole schedule of fun and games, that kind of thing, and really downplay the "Max to the Doctor" bit--as in "Max can't go on the adventure, he has to go to the doctor. Maybe after you come back from your adventure we'll go on another one with Max, because he doesn't get to go."

    I find it works better if the one who has to stay behind is given the impression that the reason for separation is that they're getting the better deal and a "special day." Otherwise, I never hear the end of it! Even at that, it's still no picnic to try to separate the two little book ends!

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  2. Barbara from BostonJuly 17, 2009 at 3:06 AM

    Yay!!!! (Commence marching band and choir)

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  3. Barbara from BostonJuly 17, 2009 at 3:08 AM

    Yay!!!! (Commence marching band and choir)

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  4. Since you are understandably trying not to get your hopes up, I (and I imagine everyone else who reads your blog) will get their hopes up for you.

    When I have to go somewhere with just Emmett, I write Violet (who is also 4) a little note for every day that I'm gone. My husband or a neighbor help by sneaking them into the mailbox each day. I usually include stickers, pictures or a little treat. She loves it - and I really think it helps ease the jealousy a bit.

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  5. The beauty of the thing is that if nothing really happens, then you'll have lost very little. LOVE the low/no-risk stuff.

    From what I've seen, most kids get a least a little something--even if it's not a huge, miraculous cure.

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  6. I believe this is the wave of the future, a future that holds hope for our children. Jude's brain damage is extensive so I do not expect any miraculous changes. Although just helping him hold a bottle, or keep his head up would make me do cart wheels. Problem is we didn't bank Jude's cord blood :(. I found a place that does placenta cells, but that requires small incisions. Anyway, I cannot wait to hear about Max's progress which I am confident he will have.
    Ps. Thanks for the mention ;)

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  7. That is so awesome!!! Best of luck i wish i had the fore sight to have banked my daughters blood.

    Sabrina sounds like a very sweet 4 year old I bet she will be very exited for her sleep over adventure.

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  8. Woo hoo! That is SO exciting! I can understand about not getting your hopes up, but as someone else already said - we can get our hopes up for you. Cannot wait to hear how it goes. And even if Max only gets a little something out of it - it would be so worth it!

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  9. Ellen,
    We will be praying for a Miracle! I am putting him on our calender to pray, that day! If you want any advice about the RTP area, email me, I grew up there and we aren't too far away now! I know lots of good places to eat! LOL! Sending our love and CONFIDENT,POSITIVE best wishes for Max!

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  10. Good luck! I just recently started following your blog. I understand about not getting your hopes up. I know a mom who took her son to China for stem cell treatments to treat Optic Nerve Hypolplasia (he was blind) The results have been great for them. It helped him gain some vision among other things they weren't expecting. I hope Max has the same good experience and I'm glad to see it being researched here, in the USA.

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  11. Barbara from BostonJuly 18, 2009 at 12:25 AM

    Me again. Ellen I just reread your entry and looked at Jude's. His mom mentioned the expense. Shall we get our pennies together? I believe you said you were set for the stem cell infusion, but August 25 will be here quicker than it may seem. Do me a favor, don't be upset with me for bringing it up. A lot of us are praying /thinking good thoughts for Max and your family. We are already invested in your (combined ) futures from reading your entries.

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  12. Hello, I'm Özge(from Turkey). Like I tell Ellen via e-mail, I'm suffered from CP and while I was searching about CP and stem cell, I found that blog by chance. We have a date too(28 September) for the stem cell transplation in Germany. We're too excited like Ellen and you(her friends). We try not to get my hopes up too high about the stem cell transplant, too. But it worths trying.

    On the other hand, although I have CP(I can not walk, I don't use my hands well and my speech is dialectic, bla bla...), it was not obstacle for my academic life. Meanwhile, I'm 24:) I graduated from my second university recently(One is the English Translation Studies from Bilkent University, one of the best university in Turkey, the other is the Public Relations) as the first again:) I'm working now as a translator and editor... I use the computer well, it's a luck for me.

    Lastly, I do hope and I am sure that everything goes well for Max. I'm very very excited for him. However, it does not work(but I do believe it works), this is not the end of life. Science is getting better every passing day and Max is very young:)

    Also I'm sure that Max will be very successful during his life...

    See you....

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  13. Hey Ellen,

    The new baby is keeping me busy (well, actually she has been a dream, it is Fletcher adjusting to not being my first priority at all times that is keeping me busy) but just wanted to drop a note to let you know I am reading and couldn't be more excited for this opportunity for Max (and I'll admit, more than a little jealous).

    Will be keeping you both in my thoughts and prayers.

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  14. Thanks for the good wishes, everyone. I will fill you in on all the details.

    Ozge, it is great to hear from you, and very inspiring!

    Barbara from Boston, you are too kind. I would never be too proud to accept donations on Max's behalf. But we are lucky enough to have the money to fund the stem cell transplant. Thank you so much for even suggesting helping out. It's touching.

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Thanks for sharing!