UPDATE 2/4/10 - Hi guys. We just talked to the doctor and got the results of the biopsy. It was not what we had hoped to hear. The leukemia cells are still growing and the marrow still showed 25% leukemia cells. We had hoped that the absence of blasts in her peripheral blood would indicate better results in the marrow. So what this means is that we start the second round of chemo immediately rather than being able to wait a couple of weeks for her to recover a bit. This next round is more intense than the last round - with higher doses of the main drug (cytarabine) and an intramuscular injection of another drug that I have forgotten the name of. We will be in the hospital a minimum of 10 days. She won't be getting chemo every day - just infusion on days 1,2,8 and 9 and then the chemo injection on day 6. They won't let us go home in between because she is at extreme risk for infection and other complications from these intense drugs - particularly since her infection fighting white blood cells are literally at 0.

Please continue to pray for Eden. She has felt really well so far and we don't know what to expect this time. Lu is asking tons of questions and seems to be holding up really well. I am mostly sick with anxiety with moments of remembering that she is in the Lord's hands - He who loves her more than even we do. I am hoping the ratio of worry to trust will reverse and that I will remember His mercy more often.

On a much less important note...we are noticing her hair beginning to fall out. While I know it is very unimportant in the scheme of things, it still makes me sad.

Please also pray for us to bear up under this stress...I am sure it is difficult for Lu to be at the hospital almost all of the time and it is equally hard for me to have to be away from there when I go to work. During the last round of chemo I took time off and we were here together and able to relieve each other. This time it is going to be a different situation and she will be much more restricted in terms of contact with others so it will probably be a little harder.
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UPDATE 1/21/10 - Eden has AML and started chemo on Wednesday. I started a caringbridge website to keep everyone updated. Please feel free to log on for more updates - it is too much to keep posting in more than one place. The website link is http://www.caringbridge.org/visit/edensalem
You will have to log in but it is a very painless process to sign up. It doesn't ask for a lot of info - takes less than a minute.

Thank you so much for your posts and prayers. I can't tell you how comforting it is to know that lots of people are praying for our girl.
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It's 4 am as I type this from the Ronald McDonald Children's hospital in Chicago. I am exhausted and can't even believe that I am writing this. Yesterday I noticed Eden had a few red dots on the skin around her eyes. They aren't raised or anything, just small red dots and I thought, "that's strange, what Is that?" We happened to have her scheduled for a well-baby checkup today so my DH brought here there this morning. The doctor noticed the rash (it's not really that noticeable - grandma didn't notice it at all) and thought it might be broken blood vessels from crying but took some blood just in case. Well, it turns out that they see leukemia cells in her blood. I am totally dumbfounded…it seems so sudden and so random. She is the healthiest kid and hasn’t showed any kind of symptoms at all. I know this is much more common in our kids but I still just wasn’t prepared. We don’t know yet if it is ALL or AML or anything about it really. They are supposed to let us go home tomorrow and then Monday we come back in for the main diagnostic work-up, insertion of central line and (I think) beginning of treatment.

I feel like my world is crumbling…I am so scared. Tonight I am holding on to the promises in Psalm34…When the righteous cry for help, th Lord hears and delivers them out of all their troubles. The Lord is near to the brokenhearted and saves the crushed in spirit.

I am under no delusions that I am righteous, but my savior is and it is in his mercy that I am hoping. Please pray for my sweet girl and for her daddy and me. For any of you who have experience with this I would appreciate your words of wisdom and guidance. I feel very overwhelmed.

_________________
Nathalie
Mom to Eden (DS) 4-13-08
Wife to Luciano (the best daddy in the world) since 10-8-2005
www.caringbridge.org/visit/edensalem

Oh, NOOOOOOOOOOOOOOOOOOOOOOO! Praying for you all.

_________________
Karien: happily married to Neels
Mom to Ewald (16), Eduan (13), Alvin (9) and KALLEN

Many, many prayers and good thoughts for you. Hang on in there.

_________________
Deryck
Dad to Xena 2 Aug 97, Lucas 28 Jun 99, Persephone 12 Jan 2004 (DS & AVSD repaired, artificial mitral valve)

Be who you are and say what you feel, because those who mind don't matter and those who matter don't mind - Theodore Geisel (Dr Seuss)

http://www.picklesnet.co.uk

keep holding onto those promises mama, even pray some for your daughter. i will be praying for you during this scary time. remember that God is God in the calm as well as the storm. keep trusting him. may his peace that passes all understanding dwell with you and your family. *hugs*

_________________
wife to martin II

mom to marty III (8/6/09, T21)

"I praise you because I am fearfully and wonderfully made." (Psalm 139:14)

Oh no!!! We are sending tons of hugs and good thoughts your way!

_________________
______
Kristen
Mom to Zach (Jan 2005) and Katelyn (Feb 2008 DS)

I am, and will be praying for all of you.

_________________
Helen

Mum to ...
Rachael Kinza (25/07/01), Matthew Isaac - DS & Autism - (14/06/03) and Hannah Cerys (14/06/05) - my gorgeous kids!

Oh my goodness....many many thoughts and prayers are there with you all. Please let us know if there is anything we can do.

_________________
~Christine~
Mom of 6
Brandon ADD/ADHD 17, Chelsea 14, Connor 12, Logan 6, Cody 4 & Austin 1 ( DS & Hirschsprungs pull through 12/8/08 )
http://www.caringbridge.org/visit/austinpaquin

This is such sad news to hear, and I can only imagine how terrified you must be. As you said in your post, Eden is a healthy kid. That's a wonderful gift for her to take with her on this journey. It'll make her a strong fighter!

{{hugs}}

_________________
~Courtney
{Lucy, 3, Ds, AVSD repaired 1/08; Brodie, 1}

Friendship is born at that moment when one person says to another, "What! You too? I thought I was the only one!" -CS Lewis

Praying for her and for you.

_________________
Karyn
Mum to Nikki (Jul 89), Stefanie (Sep 96), Joel [June 98] and Talitha (DS) (Nov 05) AVSD/PDA repaired 23 March 06

"I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, and that my soul knows very well." Psalm 139:14

Oh no!! Praying here for Eden and your family!! I can't believe it!

_________________
Karen- Mum to the world's cutest baby!! Ben

Praying for you all...

_________________

Oh Nathalie, I'm so so sorry. I can't imagine how you must be feeling right now. I'll be praying for you all--

_________________
Maresa,
Mom to Alisa (10-29-2008) DS, complete AV canal repair on 3-6-09

We've been through this, unfortunately. I'm sending you a PM.

_________________
~Renee~
Mommy to the Special K's:
Kassidy (11.4.99), Kameron (11.3.01), Kennedy (5.16.04)(Ds and AML and AAI), and Keeghan (5.1.07)

D is for Down syndrome
Kennedy's CarePage Site name: KennedyGarcia
Down syndrome awareness products!
Life with My Special Ks(My Blog)

Nathalie, my heart breaks for you.

PMing you my cell number. Please call me. We'd like to help and support you here in Chicago.

And we will pray...for sure.

Keep cleaning to psalm 34.

_________________
Gillian
wife to Sergei and mom to Elaina (, Zoya (6) and Polina (2 1/2 DS)
http://lintofpocket.wordpress.com/

Praying like crazy for you and you husband and especially your beautiful little girl, Eden!!

_________________
Maureen - Mom to Daniel(21), Brandon(19), Jordan(13)PDD, Thomas(11), Carrie(7), Samuel(4) and Mark (2 - ds, av canal -repaired 6/10/08, pulmonary hypertension)
https://www.carepages.com/carepages/MarkEdwardC32708

Know that we are thinking of Eden and you and your family. There's better advice from those who've been there; try not to waste today worrying about what's next. It will come, and we'll deal with it.

_________________


Nature goes her own way and all that to us seems an exception is really according to order.
-Goethe

No No NO!!!!! Oh, I am so sorry to hear this!!!! I have NO words of wisdom or advice, other than to talk to the other parents who have dealt with it (annieo , krist10z, and Renee Garcia (Kennedys mom but I forgot her username.) All of them can be found on Facebook too!

Please know we are praying for you here.

_________________
~Leah~

Did you visit my mom's blog today?
http://www.gardenofeagan.blogspot.com

And don't forget to visit MINE!
http://itsmylifemom.blogspot.com/

mom to Noah 23, Tyler 21, Angela 14 (DS)

Many thoughts and prayers for Eden and all your family x

_________________
Jo, Mum to Georgia 11/11/03 ( BIG High School Musical fan) and Ethan 16/12/07 (DS)

Very sorry to hear this. Take a deep breath. You can do this. I'll PM you.

_________________


"There's a release in knowing the truth no matter how anguishing it is. You come finally to the irreducible thing, and there's nothing left to do but pick it up and hold it. Then, at least, you can enter the severe mercy of acceptance." Sue Monk Kidd

"Never doubt that a small group of thoughtful people can make a difference, in fact it is the only thing that ever has." Margaret Meade

Ann, married to Tim, mom to Sally, Mark, Jane, John (12/02, DS), Paul and Alice

www.caringbridge.org/visit/johnbremer

Oh man...I am so sorry to hear this! We have been there...I will PM you. {{{HUGS}}}

_________________
Kristen: Wife to Scott, Mama Bear to Ethan
(05/25/01, DS & ALL)
Independent Demonstrator, Uppercase Living
http://kris10z.uppercaseliving.net

Thinking and praying for you and Eden...

_________________
Anna

Mummy to Matilda (2005,) Philip (2007) and Teddy (DS, 10/2009)

I'm so sorry to hear this. We will be praying for strength for your family and Eden.

_________________
Heather~wife of Travis, Mom to Micah (9/14/08 )

I am sorry for what you are going through. Our son, Noah was diagnosed with Myelodysplastic Syndrome (pre-leukemia)in August of 2008 and completed treatment in March of 2009. He has been cancer free since his first round of chemo and is doing great. The doctors all told me that children with Down Syndrome respond better to chemo than typical kids,which was a blessing!
I wanted to tell you this to give you hope. I don't know what the Lord has planned for your sweet Eden, but we will pray for you all as you go through this journey.

You are in our thoughts and prayers. Be strong sweet Eden!

_________________

Lisa - Mommy to Elayna 10-1-02 and Daniel (Ds) 6-7-05
Always have hope....Without rain, there can be no rainbows.

I'm so sorry you and Eden have to deal with this. Please know that all of you are in my prayers. Stay strong and take one day at time.
Mary Beth

_________________
Mom to Rick 30, Stephanie (27), Elizabeth (25), Robby(22), Samuel (12 DS, TOF), Shane ( 11), Katarina (7 DS, AV Canal Defect)

I'm so sorry. I have tears streaming down my face as I read your post. I'm sure you are terrified . . . but you are right to place your trust in the Lord. Please keep us posted.

Eden is and will continue to be in my thoughts and prayers.

Hugs,
Kim

_________________

Wife of Marvin
Mom to Logan (3/6/03, Ds) and Carson (9/6/05)

I can't imagine how you are feeling right now. It's just so crazy that this can hit right out of the blue. Please know that we will be praying for strength for your sweet baby and faith for you. Huge hugs for you and Eden.

_________________
Jenita
Mommy to Blake (Nov 14, 2008)

Saying a prayer

_________________
Carol mom to Adam 6/17/96 ,Emily 8/7/98, Abigail (DS)8/16/04

I'm so sorry to hear that how scary ..... I have not had any experience with it , but I have herd they have a very good cure rate with it. Our thought and prayers are with you and your family!!

_________________
Lisa Wife to Glenn Mom to Johnathan 24 Allison 21 Chad 15 Greta 14 Sarah 12 Jennifer 9 and Mazie 6 (DS/ vsd repair 8/03)

I am so sorry to hear this. I will pray for all of you - especially Eden.

_________________
Lorene in MI
Wife to Thad
Mom to Mackenna (6/1/97) Tanner (2/12/99) Ashton (3/8/01) and Sienna (7/14/09)
http://vimeo.com/6835028

Praying for you!

_________________

Oh Dear Lord! {{{{{HUGS}}}} and Prayers!!

_________________
Jennifer, Momma to The Brookster 4 yrs old


www.specialneedsinmolalla.blogspot.com
www.foundalongthejourneythroughholland.blogspot.com

Thinking of and praying for you, your family, and most especially darling Eden.

_________________
Mary
Mom to Libby 6/92, Alex 9/93, Anna (DS)12/12/03

Please support the Down Syndrome Research and Treatment Foundation http://i139.photobucket.com/albums/q284/maryc_010/a13-1.jpg[/img]
[img]
[IMG]

Praying for you and for Eden. I'm so sorry.

_________________
Lisa

For You created my inmost being; You knit me together in my mother's womb.
I praise You because I am fearfully and wonderfully made; Your works are wonderful, I know that full well.
Psalm 139:13 & 14

Praying for sweet Eden and all of you!

_________________
Carrie
Mama to:
Bennett (9/96), Merrick (1/99), Giselle (11/04), Calder (4/07), Isaac (7/08 ) and Jotham (4/09)

http://mommypress.com/itllturnup/

I am so sorry... praying for Eden and your family!

_________________



Mom of two beautiful girls and Happily together with BF John.

Ashley Kathleen (6-2-02)
Kylie Ann (4-13-09)

Oh no! We will be keeping Eden in our prayers, and you as well.

_________________
Kim. Wife to Ray, Mommy to Charlie (DS) 1/2006 & Calvin 3/2008
http://charlies47.blogspot.com/

There is more than one way to have a good life!

Natalie.....What a terrible shock for you and your hubbie!
You, your hubbie and Eden are in my thoughts and prayers this morning.

_________________
Linda & John
mom to Hannah Kate (Age 12 ), Robert (Aged 6 - DS)


First day at school

Oh no... I'm so sorry you are going through this. But God is good. And I know He will be with you and precious Eden through this journey. Hold tight to this verse as well.

Quote:

"For I know the plans I have for you." Declares the Lord. "Plans to prosper you and not to harm you, plans to give you Hope and a Future. Then you will call upon me and come and pray to me, and I will Listen to you. You will seek me and find me when you seek me with all your heart." Jeremiah 29:11-13

{{{{HUGS}}}}

_________________
Keep the Faith, Amy
Mom to Kristin (25) Jessica (23) Rebecca (19) Rachel (14) Sarah (13) Hunter (10) & Austin (5) DS

Oh, I'm so sorry to hear this. How shocking for you!!!! Many prayers for Eden and for your entire family. It sounds as if you caught this very early. That's fantastic news. Hugs. Keep us posted.

_________________
--Beth
Mom to Oliver, 5 (DS, ADHD)
and Sebastian, 4