This is a loud shout out to the blogging community!
Macy has a condition with her blood called
transient myeloproliferative disorder
or transient leukemia
Leukemia is a scary word, but what she has is a condition where her blood cells for the first 3 months of her life look similar to leukemia cells. It resolves at three months.
But I was reading today that Down Syndrome kids have a higher risk of getting AML (Leukemia) and those that have TMD have an even bigger chance. Most of them will develope the actual Leukemia before age 3. This has me a little worried. Any more information from moms out there would be GREAT!
8 comments:
We (luckily) haven't experienced this. Here are a couple of blog links to those who have...
http://littlewonders-heather.blogspot.com/ (TMD & AML)
http://www.myspecialks.com/
http://sheisourangel.blogspot.com/
http://zoromski.blogspot.com/
Good luck - praying for you :)
Hello new friend.Glad you found be on facebook.I think we were meant to be friends... do you see that you and I have the very same quote on our blog headers?Do you know Natalie Merchant and the song Wonder is my ultimate guide for my girl?And ... you have a dog named Zoe!But seriously, I want the similarities to end there as in NO LEUKEMIA FOR YOUR SWEET,SWEET GIRL..okay?
As for questions... ask away.I have tons of experience,unfortunately but you know,God calls me to use the good and the bad to reach others.So reach I will.
Often I think,some are scared away,since Zoey came with so much more but others, find hope and that is my wish.That you see in Zoey ... hope.Email me.Call me.Whatever you need.But the one piece of advice I need to put out there is to enjoy these moments right here and now.This time, with your precious girl and all the wonder she holds,is what is all about.I found I missed some of those moments,many actually, caught up in the what if's.I could not and cannot, retrieve the time lost.I regret that the most.
We all know that we ultimately have no control.What.So.Ever.We cannot will the direction our lives are to go or our children's but we can trust in Him.He will lead.We will follow and we will try to trust in the grace He will provide.
Got to run now and catch up on your previous post and your beautiful,beautiful family ...
ahhh, I have cried more reading your blog than anything else lately. Macy is a very lucky and loved little girl. I would recommend trying to get into foothills genetic counseling program, you can take a one day course, I know that you are a nurse, but they are able to lay it all out before you as to what to expect, and unfortunately there is an increased chance of leukemia - it is crazy the various things that are linked to DS. We love you and are praying for your family daily!
I know we have already chatted about his on facebook but I just want you to remember that for right now, it is only a higher risk....she doesn't have leukemia and the odds are still in her favor to not getting it. As Heather said...don't dwell on the what-ifs. Ella had TMD and its been almost 2 years of me worrying about it with at least another year to go but so far so good. You WILL worry about it always rearing its ugly head....but I think the key is to not dwell on it and let it consume your life.
I'm so sorry to hear about this. :( But I'm so happy you have found some others that have dealt with this ... I know there are a few others on the Downsyn forum ... not sure if you have been over there yet. :) Praying this doesn't become anything more in the future, but if it does, you will have lots of people to hold your hand!
Oh hugs to you momma- I know how incredibly scary this must be. I don't have any additional info about it just wanted to send out cyberhugs
We haven't experienced this either but I hope you are able to find some anwsers! I try not to think about the leukemia link to ds too...I don't know much about it but I don't like to think about it. Good luck!
I just found your blog tonight - and of course had to read it bottom to top (starting in January ;) ... What a beautiful family you have. I was going to link you to Heather, Zoey's mom, but no need it looks as if she's found you! My daughter didn't have the transient leukemia, her leukemia just kind of showed up at 19 months ... grrrrrr. Oh the stories. Anyways, if you're interested, my blog is www.cbranam.blogspot.com (she was diagnosed in September 07 if you want to look back at the archives) - or you can look me up on fb, carey branam. Good luck and I look forward to reading more about your darling!
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