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Sunday, August 22, 2010

To bank or not to bank?

Fred and I have been looking into banking Mattias's cord blood in the event that it could one day be used to help Elise. We're running out of time to make the decision, and we're still very much on the fence about it.

Let's face it... it's not cheap. Over $2000 initially, then a fee of $125 per year after that. But, I would HATE to put a price on a possible cure for Elise. Could you imagine the regret?

We've talked and talked about it. Asked Elise's pedi about it. We plan on talking to Elise's endo this week too, but I'm wondering what all my D-peeps think about it.

Have you done it? Looked into it? Have any thoughts about it? Opinions? I'm looking for some fresh input before we decide yay or nay.

13 comments:

  1. I would rather not say anything because this was not an option when my kids were born and I think in many ways it is a great thing but I also feel like it is very much a personal decision .

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  2. I went through the same decision when I was pregnant with The Princess, and for me it ended up not being a choice. I decided we HAD to do it. We could not afford it on our own, so we set up the page where other people could help with the initial costs and we had lots of friends, and family contribute.

    My brother ended up forfeiting getting a new laptop so they could pay the majority of the costs, because it was THAT important.

    I would hate to wonder down the road if I had not done it.

    Good luck in your decision!

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  3. WOW Tracy that is a cool story about your brother!!!

    @ Joanne...it is sooo hard to weigh in on this one as Joe is my youngest and I have never been put in this situation. I think though...if I may be so bold to project myself into your current situation...I would opt for it. I think we need to put some eggs into as many baskets as we can. The stem-cell basket is a promising one at that.

    Good luck in making the decision that is right for you and your family. Know I support you 100% in any decision made.

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  4. We did it with our second, but not the third. It was way expensive and, sometimes, I wonder if it was worth it....but....I like the feeling of knowing it's there.

    I will say, however, that they were BARELY able to get enough. We made the minimum requirement by a hair!!!

    And I don't think we would have been refunded if we didn't get that last little drop.

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  5. what a big decision...we never really thought about it because Cara was dx after we were done having our babies. I really don't know much about it so I really don't have much to say but follow your heart do what you think is best for your family. That is always right.

    BTW I love your walk logo....very cute

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  6. We looked into it for both children and from my understanding there is only a 25% chance that there will be a match, then when you factor in things like the variety of HLA on organs and everything it may not be the "easy" answer. However, if you were to feel like it could make a difference for your daughter than....
    Well...I guess what I am saying is that nothing is a sure thing and you'd have to really weigh what/how your purpose for doing it would be met...even if you just have a pie in the sky dream. KWIM?
    Anyhow, we ended up not doing it as the things I was concerned with, things that are genetically prevalent in our family, are not things that they're finding need to have stem cells from the same genetic make up. So, that's why we choose not to.

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  7. Hi Joanne,

    T was almost 13 when diagnosed. When pregnant with his little sister 5 years ago we seriously considered banking her cord blood. She was born at home with a midwife and we couldn't afford to bank the blood and pay for her birth. I wish we had figured out a way now.
    T's diagnosis has made me feel like our kids health is vulnerable and fragile, like if T1 can happen to us anything can. I wonder if having that blood would be a comfort now. I don't know. It is such a personal choice.
    The only major decision that feels comparable is when we were deciding on the clinical trial for T. Once in a lifetime chance and a small window of time to decide. I can only say that I had a very profound, deep feeling that we HAD to do this. Good luck and follow your instinct. Hope you enjoy these last weeks of your pregnancy. I will be thinking of you.

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  8. We didn't, and I often think about our decision and regret it a bit. But it is a crazy amount of money, and there are a million factors that I didn't look into. Good luck with your decision. I know it isn't an easy one!

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  9. leslie (Brady's mom)August 23, 2010 at 2:01 PM

    Hi Joanne,

    It was great meeting your husband at the fair this weekend! We're having to make this decision right now too and don't yet know. Our endocrinologist said they're not recommending it right now, but I haven't drilled him for the basis for that. On the other hand, my brother the superstar autoimmune PhD student says it's promising. I got on pub meds (awesome resource if you haven't been!) and looked up the t1 study the main private cordblood bank cites. It looks like they had no success on that trial (other than that it didn't seem to cause any harm). A middle option you may not be aware of is the public Texas cord blood bank (http://www.southtexasblood.org/texascordbloodbank.asp). Although they don't have any partner hospitals in North Texas you can still get it done - you ask them to send you a kit for your doctor. It's basically free but the main downsides I see are (i) only 25% of cordblood actually ends up saved in the bank - it's either too small a sample or there's some other problem, and (ii) they won't save it for your family in particular.

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  10. We did it with Peyton, but that was before Liam's diagnosis. It was expensive, but after talking to my OB, we decided to do it. It just seemed like such an easy thing we could do. If we imagined ourselves in a situation where we needed it, we would be angry at ourselves for letting $1000 hold us back from her health, or her life.
    We've talked about it now too, hearing things about cord blood and diabetes, but we honestly couldn't say we'd use it for Liam. Because what if Peyton were to get diabetes later too. Would that be fair? What if she got some kind of cancer that it could treat and we had used it on Liam's less serious illness.
    All hypothetical (thank GOD), but nonetheless, it's very sticky, ethically speaking.
    If you can do it, it may give you some comfort. We looked into the public banking and our OB said they were too far away and it wouldn't be an option.
    Only you know what you can live with and what you can't.

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  11. I just happened to see you blog today for the first time, I too have a child with type 1... shortly after his dx I found out I was pregnant with baby #3... We decided to bank his cord, at both major banking companies they told me that even though there are some clinical studies being done using the donors own stem cells there are none being done using a sibling's (for type1 diabetes) stem cell...

    I dont know if it will be the cure for my son, i hope this baby will never need it... i just know that i wish i would have been informed enough to have banked it for my other children... and have another option for a cure.

    it was very expensive but the company honored their $400 competitors cupon and the grandparents chipped in... its one of those things you dont get a second chance at... kwim?

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  12. I am planning on doing it, as of now, but who knows, things may change. I am Type I diabetic and this is my first pregnancy. I think I would rather have it just in case.

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  13. Joanne - I realize that I'm chiming in super late on this and I'm sorry! I don't know if you've made your decision yet, but I'm going to offer up my opinion. I was 6 wks. pregnant with Little G when Ms. J was diagnosed and our endo gave me the pamphlets about the cord blood banking. He said that right now (keep in mind that was 4 years ago) they aren't doing sibling testing, BUT what if that easy resource was able to cure your whole family of T1. The cost was too minimal to us to not consider the ginormous benefit it could provide. So we did it.

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