Monday, June 15, 2009

A world of possibilities

video

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?

17 comments:

  1. How exciting for Max-- hope big things come of those little cells!

    Sabrina made me crack up-- evidently she's not much of one for waiting.

    We've been doing alot of dreaming this week. The thought of Connor riding by himself on a tricycle, doing an activity any typical kid of his age is doing, is incredibly exciting to me-- it brings tears to my eyes just thinking about it.

    Here's to hope!

    ~Jess

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  2. Barbara from BostonJune 15, 2009 at 1:00 AM

    It will happen as its supposed to- if its meant to be it will. As for the $10,000.00- Schuyler's parents received money from readers of Rob's blog without really soliciting it. If it works out for Max we can all roll our pennies. That beautiful little face could provide powerful incentive...

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  3. Barbara from BostonJune 15, 2009 at 1:05 AM

    P.S.
    I was sorry we didn't get to see a picture of Sabrina expressing herself...

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  4. That is exciting, for you and especially for Max.

    I've been dreaming of never having to go back into the hospital again, except to work. After two weeks shut up in a small pink room, I am ready for Ivy to be super dooper healthy forever more.

    Also; I wish that Ivy could just have IV antibiotic infusions always. I have never seen her so well. I don't want it to end.

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  5. Those kids of yours are too much - it's impossible to look at them without cracking a smile.
    You know, we were told the same thing about Therasuit and constraint induced therapy - they won't hurt but they might not work. I remember one doctor (not Daniel's regular doctor) telling us not to waste our time with CIT because it might be ineffective. Of course we did "waste our time" with both therapies, and thank goodness they did! They have changed Daniel's life in unbelievable ways. I hope stem cell therapy has the same result with Daniel.
    By the way, we were going to bank Daniel's cord blood, but after months of research, decided it wasn't necessary. Boy, am I kicking myself for that now. We won't make that mistake the second time around - if there ever is a second time around, that is.
    As for dreams for Daniel, that would be for him to do all of the things he wants to do. He's such a little daredevil who wants to climb mountains, jump out of airplanes (I have a deal with him that we'll go skydiving together on his 18th birthday), and fly hot air balloons around the world. Of course the mere thought of doing such things will give most parents gray hair, but I just want him to be able to accomplish everything he wants. With his determination, I have faith that he'll do it all.

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  7. I'm so excited for Max to be able to do this. I wish everyday that we were able to save Caleigh's cells. Her birth and immediate surgery hindered this.

    The best advice I can give to a pregnant woman, and I have given it many many times is to save the cord blood. I think this is the future and I can't wait to see how it helps Max!

    As far as dreaming....I dream of the day Caleigh can speak to us. She's been frustrated, we've been frustrated. I want the frustration to end.

    Of course this is just one of my many dreams.

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  8. I am just so excited for you. I do think sometimes the doctors downplay new techniques because they don't want you to have unrealistic expectations. They did that with us and we just didn't listen to them and refused to limit the boys in any way or give them any cues about what they could or could not do.

    I say if you can manage it, and it does no harm, try it, do it. If I had a spare ten thousand dollars I'd send it your way! I wish I had done the cord blood thing, too but I was stupid, unfocused and frankly, too poor to afford it. Oh well--look forward, not back, that's what I always say!

    Your babies look adorable in that little video clip!

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  9. I'm been feeling really hopeful this week too although for no particular reason.

    If I thought really hard about how much cash I've shelled out for Charlie. . . it hurts me a little. I wouldnt' be able to resist the Duke thing.

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  10. That is so exciting about the stem cell therapy. I will keep my fingers crossed that Max is able to get it and that it will make a difference.

    I've been dreaming of this weekend and excited that it looks like my girl will be well enough that we can take her out with us to celebrate Father's Day this Sunday. It's been a very long time since she's been anywhere except doctors' offices and hospitals! It's going to be a great day!

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  11. I do not know much about SCT but I have a friend who is trying to get her daughter into Duke but her sample at present is not enough.
    It is a big decision and one that I am sure will think a lot about.
    As for hopes and dreams; I just want Elizabeth to be happy and have friends who she can play with and gain support from.

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  12. I hope, I hope that all of our dreams for our children—both imminent and future—come true.

    Barbara, I am so touched by what you said. We are very fortunate that we'd be able to swing the cost of the stem cell transfusion.

    Jo, I've heard that in China, they are able to use donor stem cells for infusions. So even if you didn't bank Daniel's blood, there is still a possibility for stem-cell therapy n the future. This is just the beginning of stem-cell therapy, and I really think things are going to snowball. Who knows what will be happening within a few years. Perhaps, someday, this will even become a standardized procedure, rather than the fringe/experimental one it is now. Assuming that they will be able to gather more concrete evidence that this really does work.

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  13. I've been reading your blog for awhile, but can't remember if I've ever commented. My son Matthew went out to Duke to get a stem cell infusion when he was 1 month old. He has hydrocephalus and I found out about dr. kurtzburg doing this for children with hydro. Here's the website we found..I know max doesn't have hydro, but thought you may find this interesting...Michelle, the auther of the site, is a good friend of mine now. We'll never know how much it helped our son because he was only 1 month, and at some point going out again to recieve a second. Michelle's son Owen had his second infusion when he was 14 months old and she saw huge increases in him. Glad you're going...you'll never regret it.
    here's the site.. fetalhydrocephalus.com

    Jill

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  14. Ellen, Speaking of possibilities, I hope you saw this story on ABC News or elsewhere on the internet. In case you didn't, here's the link: http://abcnews.go.com/Health/MindMoodNews/story?id=7834188&page=1

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  15. That sounds like such an exciting opportunity! Keep us informed on how it goes!

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  16. I love that video. I love the smile on Max's face after he hit the ball. He looks so proud and he has every right to be. I really hope things go well at Duke!

    I have actually been discouraged lately, but my daughter has been showing me the amazing things that she can do. She has been drinking liquids, which is HUGE for her. I watched her stand on her feet today (with help) and actually swing her legs a bit like she was walking. It was so great. She is showing me that I have no right to be discouraged. I need to believe in her at all times. What a priviledge to be her mom!

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Thanks for sharing!