Sunday, November 12, 2006

WARNING...THIS IS LONG!

I am writing President Bush and Vice President Cheney a letter...I've never done anything like that before, but once your life is affected by politics, I have to admit, it's interesting how intense you can feel about something...I am talking about cord blood stem cell transplants. I am educating myself on the topic, and before anyone freaks out, they are umbilical cords donated by families of full term healthy babies, NOT aborted fetuses.

If you've recently had a baby or are currently pregnant, you have been sent fliers in the mail regarding saving your child's umbilical cord for future use or donation. Because it's so new, most of us, including myself, have overlooked the "need" and have opted out of the option. You see, the FDA and many doctors only believe that hUCSC transplants help with leukemia and some forms of anemia. That is just the beginning...in other countries there has been great documented success using cord blood stem cells for many other ailments. In fact, an expert in the field, Dr. Steenblock (book, Umbilical Cord Stem Cell Therapy, The Gift of Healing from Healthy Newborns) recently met with the President and informed him of the great results they have had with these transplants in people, especially children, with cerebral palsy, early stage ALS, some forms of MS, and even leukodystrophies (which is what they think Noah has, though one that has not yet been discovered). Bush was encouraged, though frustrated because his cabinet had not shared this information with him.

People who are not doing the research have lumped these transplants with controversial embryonic stem cell transplants. This is just not the case! Obviously Jason and I would not want another child sacrificed by abortion so our child could live…Heaven is a much better place. So, like I said, I'm writing a letter because Jason and I are considering this procedure for Noah since no one else here in the US can do anything for him. Now, please know my heart, I'm not going to rant at the President, express my political stance, or claim that I ever want to be in their positions of power...I pray for them...leading a nation is likely a very trying job (*understatement*). I’m writing because this may entail a trip across the border…The fact that this kind of transplant is approved in the US for only two ailments, neither of which is a leukodystrophy, is frustrating and so limited in thinking because it is a simple procedure, but taking Noah on a private jet with a medical team…that’s the main risk!

The “transplant” is like a blood transfusion, of which he has had three, and it is administered through his PICC line. It’s approved in the US. Our insurance could cover it if people making rules would do the research…He could just have this done 5 miles from his house in his hospital bed…

We usually take an annual trip to Mexico, either for missions or for a little R&R, and the next one, I told Jason, I wanted the kids to come along…we just didn’t think we’d be the ones going along with Noah, AND, how sad to have to leave our soil…the land of "freedom"…Anyway, I encourage you to do some research of your own on this topic if you are one that is anti-stem cell research. There is an alternative to embryonic stem cells and it lies in trash cans of delivery rooms across the nation. We actually did donate Noah’s cord to the UCHSMC for a diabetes screen. His own cord wouldn’t have helped him in this case, though, that’s why it’s a “transplant”.

Two months ago I had a feeling that Noah would need something radical done with his blood, one, because of a scripture that was given to me from someone and two, because of research I had done regarding a theory I have…When I asked the docs here about it they said the only treatment would be a total blood exchange and you can’t just opt for a total blood exchange, IvIG or plasmapheresis. Okay, but you don’t know what’s wrong with him. It may help him! Treating him like hospice...No thanks! God brought Noah into this world for a purpose. He’s alive. He’s stable. He just isn’t walking in abundant health YET! He will and when he does, I pray it will change the face of medicine forever! Noah is not just 1 in 5 billion. There are a lot of children that are sick, that die without the docs ever knowing why…I pray that his little life will impact the lives of so many other children fighting for theirs.

16 comments:

  1. Adrienne,

    So glad that you posted about this. Do you know where to donate? I always got ads for storing it for myself, but I didn't want to do that, and I didn't know of anyplace to donate for free. Praying for you and your family. You little boy is just so precious! He is a beautiful little guy.

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  2. Anonymous7:57 AM

    It was so nice to see you all this weekend, sorry that it was a little longer than we had anticipated but it was such a blessing for us to be with you guys! Your family is amazing to watch! Noah is beautiful... and so are you! Jason, well I am not so sure as he did not shower that day! :) We love you and we are praying for you daily! Hope to see you soon. Love, Wendy

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  3. Adrienne,
    I agree with you about this topic. We were considering this procedure but since it is so costly, we decided we will be donating ours. I hope the future will bring more awareness so more mom's will donate and I also hope they can do somethign to make it more affordable to keep your own. You are continually in our prayers. We love you!
    Jeb & Kristy

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  4. Anonymous12:02 PM

    FAmilia Graves,

    I wrote a short blog on your Stem Cell Letter to Mr. Bush and directed people to your blog and the posts regarding stem cells and Noah's fight.

    http://ransackerblog.blogspot.com/2006/11/stem-cells-i-know-that-subject-brings.html

    It is a brief advert for what you are trying to achieve.

    Todd Howell

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  5. Jason and Adrienne,
    I agree 100% with you about this topic. We were 5 months pregnant with Brylie when we found out that Hunter has Type 1 diabetes. We did some quick research on saving cord blood and have Brylie's stored in a blood bank. We continue to research it and pray that this may be a cure for Hunter someday.
    I admire you for what you are doing. I will pray for your message to be heard. I think there are miraculous things that can be done with stem cells.
    Good luck-

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  6. David2:57 PM

    Adrienne,

    Thanks for the post, and all that you're doing.

    You, Noah, Jason, Emily and all of your family, care givers... and even the policy makers are in my prayers.

    David

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  7. Anonymous4:02 PM

    Will totally be praying along these lines, Ade. It's cool for me to know that when I was praying a month or so ago and felt like God was prompting me to pray for a medical miracle, it seems that it was actually him and not just me... and now you guys are moving in a rather unchartered direction that could lead to just that. I will continue to pray for your little guy. May Noah's life and your faith be the beginning of a new day where babies like him will have to suffer less to find healing!!
    Love you,
    Chris K.

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  8. Wow, Ade. Great post. I'll definitely look into that with our next.

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  9. Anonymous8:45 PM

    It was so wonderful to meet you guys this weekend. I am so grateful to Wendy for making that happen. You are such a blessing to so many people and most certainly have made an impact on my life. I am constantly in thought and prayer for Noah. Thank you for allowing us to hang out with you and Jason for so long. It really was a great time. I hope you enjoyed the brownies... Keep up the good work Adrienne!!! :D Loving the letter to Pres. Bush... I say, bring it on!!!
    God bless you guys.
    ~ Lisa

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  10. Anonymous2:53 AM

    you are amazing woman

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  11. Anonymous12:47 PM

    From the start of reading your blog, I knew in my heart of hearts that part of yours and Noah's purpose on this earth is to touch the lives of so many people. What's been awesome and amazing to watch is all the different ways that you all are doing it. Spiritually, emotionally, medically... From one Mom to another: Keep on keeping on sister!

    You are your son's voice and an incredible voice at that. Always remember that there are all these people out here who love you guys and we don't really even know you! (Although from the beginning I've felt like I have - like I've seen your face somewhere).

    Thanks again for sharing your journey with us and all this information. I plan on reading "The Gift of Healing..." to educate myself.
    -Annalisa

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  12. Anonymous9:11 PM

    wow, very informative. I too have tossed that stuff to the side and have never been explained what it is about. It seems so strange that that would be lumped in with all the other stuff? Will be praying this stuff reaches the right ears.

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  13. Hey you guys,
    I love you and can't wait to see you!!! This procedure sounds so amazing, I had no idea something like this could even be done.
    As always tons of prayers and all my support!
    Tonja

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  14. I am relatively recently educated on the topic of stem cell research. Saving our Nicky's cord blood wouldn't have helped him, but publicly banking it for research might have saved another baby agony and surgeries in the future. I once read an article online about how they were using stem cells to grow tracheas and how they were researching ways to grow hearts (so that kids in need of transplants could have their *own* tissue implanted, removing the need for a lifetime of anti-rejection drugs). It was amazing (and unfortunately, the article was un-archived and the link now invalid).

    We live in Pennsylvania. We have no public cord blood banking available. Some states do, though.

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  15. I can't believe this came in my inbox this AM - an article about using stem cells collected from amniotic fluid to grow heart valves!
    http://news.yahoo.com/s/ap/20061115/ap_on_he_me/growing_heart_valves

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  16. Amen.
    Here in St. Louis we can donate our cord blood, not for storage, but to a bank where it will assist others in treatment. We did the procedure with both our sons and two years ago the bank contacted me and told me that my older son's cord blood was going to be used to treat a little boy.
    Wonderful!!

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