About Us

Welcome to our blog!  Whether you're new here, or whether you're a long time stalker, I thought I'd do a quick little page to share some of who we are so you can get to know us a little bit more.

First off, this is us:


Starting from your left to right:
Back row: Tyler2, Ella (in arms), Me/Teresa, Tyler, Emma.  Front row: Vi & Rhys

If you know how to count, you'll see that there are seven of us.  Two parents and five children.  We used to have a few fish, too, but sadly they died after we flushed them down the toilet.

Our focus in life is to have a successful, happy marriage and to teach our children to be good, loving people who can contribute positively to the world.  We love spending time together and don't do a whole lot else other than that.  (Well, unless you include the secret spy missions that we go on since we're also a family of ninjas.  But I probably shouldn't talk a lot about that.)

As many of you know, when you have several small children (or even just one!) there are many funny things worthy of recording so you can blackmail them in the future.  This is a huge part of why I keep this blog, to use it as a journal.

(Do you like how I've just recently learned to cross words out?  Now I'll probably overuse it all the time.  See, what was the point with crossing that out?  I don't have one.  Just wanted to use it.)

In addition to using this as a family journal, we also use this as a means of keeping everyone updated on Emma and her health.  Miss Emma (standing next to dad in photo above) was born with a very rare genetic disorder called Fanconi Anemia (FA).  It causes bone marrow failure and different types of cancers, often including leukemia.  Currently there is no cure.

There are treatments that can extend her life (if successful).  Such as a bone marrow transplant, which is actually a big reason with had our other four children so quickly.  Emma is in severe bone marrow failure, and we knew she was going to need a bone marrow transplant.  We also knew we wanted more children.  We felt an urgent need to have our other children quickly in hopes of finding that sibling donor bone marrow match in time for Emma.  It turns out God has other plans because none of them have ended up being a bone marrow match for her (though, ironically, they each match each other in pairs).

We have Emma on androgens to help boost her blood production.  She had been on blood transfusions for about four months at the start of 2010, but other than that, she is holding her own right now.  When I get more time, I'll be putting together a page all about Emma and answering many of the common questions that we get.

**Update April 2013:  Emma has entered into more severe failure.  Her immune system seems to barely function when she gets sick.  We had hoped that the androgens would work better than they are.  We now need to do a bone marrow transplant.  As I write this, we are searching for a match.  They are currently testing people to find out if anyone is a match.  All of her blood lines are into severe failure ranges.  She needs blood transfusions, but since we are wanting to transplant (and avoid creating antibodies, like happens from blood transfusions), we are needing to get her to transplant quickly.**

**Update June 2013: On June 6th, Emma, Ella, my niece, my sister, and I made the almost 1000 mile trip to Cincinnati for a bone marrow transplant for Emma.  She's gone through a lot of testing thus far.  We have a 9/10 match for her.  Chemo is currently scheduled for July 14th and transplant a week later (originally chemo was scheduled for the week of June 24!).**

**Update December 2015:  Emma had her bone marrow transplant in August 2013.  It was a very rough, long process.  Despite a lot of awful things she went through, the actual transplant took and started developing strongly.  Then she developed PTLD, which is a virus-driven lymphoma.  This was caused by a virus that had "woken up" once her original immune system was destroyed.  This can be a deadly illness to have.  We were told she had 30 days to live if the medications didn't work.  Long story short, we ended up taking a medical flight from Cincinnati to NYC for an experimental t-cell treatment.  That worked amazingly well.  She was cured of the PTLD, but we are two years out from transplant, and the PTLD seems to have messed up her immune recovery.  It hasn't developed more since then.  She has platelets and red blood cells again (yay!).  But her immune system can't function much yet.  We are hoping that it just needs more time.  She is still in isolation and has to wear her mask any time she is in a public setting.  


4 comments:

  1. My prayers and POSITIVE thoughts are with you!

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  2. Absoultey love your video, very touching. Thinking of your family♥

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  3. I'm the founder of XOXO Hats for Strength, I have a gift for Emma. How may I send it to her? You can email me at xoxohats@gmail.com. Thank you Emma for all of your strength.
    Xoxo, Nicolette

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  4. Hello Teresa
    I have been flowing you for… well longer than I thought - time flys fast! And it's good to see Emma getting better.
    I saw a comment about a bra to help keep her line safe, and that she is not very big. I thought to myself that it can't be true that you can't find something that would be helpful and fit her. So I don't know anything about lines, I don't know her size, I don't know what you need there are lots of thing I don't know, but I really want to help if I can.

    Here is what I found:

    www.gap.com/browse/product.do?cid=7077&vid=1&pid=515492002
    http://us.nextdirect.com/en/x535738s5
    www.shopjustice.com/girls-clothing/pjs-bras-panties/bras?view=all
    www.marksandspencer.com/2-pack-seamfree-assorted-bras/p/p22246771
    www.marksandspencer.com/5-pack-cotton-rich-crop-tops/p/p22144530
    www.marksandspencer.com/5-pack-cotton-rich-assorted-crop-tops/p/p22095308
    www.marksandspencer.com/2-pack-seamfree-bow-crop-tops/p/p22167325
    www.marksandspencer.com/5-pack-cotton-rich-assorted-crop-tops/p/p22107057
    www.marksandspencer.com/2-pack-santoni-seamfree-bow-bras/p/p22167327
    www.marksandspencer.com/2-pack-seamfree-crop-tops/p/p20048026
    www.marksandspencer.com/2-pack-santoni-seamfree-crop-tops/p/p22204694
    www.marksandspencer.com/2-pack-seamfree-crop-tops/p/p20098629

    Or what about a bikini top of any kind?

    Maybe it will help or maybe inspire you?


    Love From
    Grace

    I hope you see this :)

    (I don't have a Facebook account, so I write here)

    ReplyDelete