First off, this is us:
Starting from your left to right: Vi, Tyler (daddy), Rhys (on his lap),
Emma, Me (momma), Ella (on my lap), and TS (aka Tyler Jr).
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
(Do you like how I've just recently learned to cross words out? Now I'll probably overuse it all the
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 (sitting smack dab in the middle of the 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 when we can.**
**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!).**
I made put together a little movie/video of Emma, explaining her disease and showing some of what she has gone through. It's a very difficult and aggressive disease. It makes us treasure the time we have and pray that the Lord will bless us with a lot of it.