June 7, 2011

Congenital Amegakaryocytic Thrombocytopenia

I'm not really sure how to lead into this...

After almost 8 months of testing, no answers, more testing, bone marrow biopsies, and even more testing, we have answers. 

Answers that I never wanted to have.

Monday morning, Kate was diagnosed with Congenital (from birth) Amegakaryocytic (lack of megakaryocytes or large cell-making cells) Thrombocytopenia (without platelets) - a very rare (I'm talking less than 100 known cases in the entire world) genetic bone marrow failure. 

Kate needs a complete bone marrow transplant as soon as possible. 

We are shocked, terrified, heartbroken, and so upset that our sweet, innocent baby girl is about to be put through so much. 

However, we realize we are also blessed.  We have a support system like none other, live 15 minutes away from the best pediatric bone marrow transplant center in the country, have an amazing team of doctors, and most importantly, we serve a mighty God who will wrap His arms around my family and carry us through this journey.

I will update with more information as it comes in.  Right now we are waiting for insurance approval (seriously insurance, we are talking about my baby girl - get on it so we can get started) so that the transplant team can contact us and start the process.  Once Kate is "typed" we will start the wait for a donor.

I claimed this verse during my struggles with infertility and it seems fitting to claim this verse again.  I feel like it is our verse for Kate, we just didn't know it would be her life verse when we were longing for a child. 

"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." Jeremiah 29:11

We are asking for any and all prayers.  Please talk about Kate - add her to your prayer list, email your granny that prays all day long, get the word out. 

Kate needs it. 

Kate is a fighter.  She proved that a while ago.  I just wish she didn't have to fight this fight.

I know I have kept quiet about our journey to this point - I will post a bit more about how we got to this diagnosis later this week.

50 comments:

Mrs. D said...

This is SO unfair. Praying like no other.

Andy and Emmie said...

So sorry to hear this Lindsey! I have been reading your blog before Kate was born and she seems like such a sweet girl! I will be praying endlessly for her!

Nicole said...

Praying for that sweet baby girl of yours.<3

Jenn said...

Praying nonstop for precious Kate.

Allison said...

Will ceratinly pray. I'll also be looking at how to get tested to be a donor. This just makes me want to do something....

The Swanbergs said...

Have been reading your blog for months now...just want to say that I am certainly praying for your little one.

What can we, as complete strangers, do to help? How does one find a bone marrow transplant match?

I wish there were more ways to help.

the workaholic momma said...

My heart is breaking for you....sending so many prayers and hugs your way.

Shannon said...

Lifting sweet Kate and your family in prayer.

(hugs)

Summer said...

praying so much for your fam and precious Kate! That verse is one I lean on as well it is perfect! Sending so many prayers your way

Summer

Christy said...

Lindsey, I want you to know that Kate will continue to be in my prayers. My friend Kellie's little girl had a bone marrow transplant ealier this year so I have an idea of what your going to be going through in the next couple of months. I'm glad you finally have answers, though it's not what you wanted to hear. (((HUGS)))

Megan and Justin said...

I will keep her in my prayers! just found your blog.

nikinikinine said...

There are no words to describe how sorry I am to hear this news. I just saw your post on FB about how people can help by registering with the bone marrow center. While that helps to possibly find a match, is there a way that people can specifically ask to be a match for her? Is this similar to other type of organ donations where there is a list and people go in an order? I'm sorry to ask so many questions at a time when you are just processing everything. I'm just trying to figure out ways my family and I may be able to help. Big HUGS to you.

Christie said...

Praying, praying, praying! And as always Lindsey, keeping your sweet family in our thoughts as you embark on this journey.

Mrs. Grant said...

So sorry you all are having to go through this. Will be sending lots of prayers your way!

Mama Fee said...

I am shocked, heartbroken and honestly speechless. My eyes are filled with tears and I can't imagine what you, Kate and your family are going through. PLEASE let me know if you need anything. I think Kate is the sweetest babe and this is something I can't imagine happening to her.

The good news- you have answers.

Hang in there mama.

MJT said...

I remember how sick yet strong you were when you were in college and I know you have given sweet Kate that same "fighting spirit." Keeping you, Alex, Kate and the rest of your family in our prayers. Ms. Lynn

Erin R. said...

Linds, I don't know how you did it but this post is perfectly written. I had to take breaks though. My heart is broken but at the same time full of joy, it's just the weirdest feeling. I'm heavyhearted at the decisions you all face, but grateful that you now know the direction to head in. As you prepare for this road ahead...remind yourself to slow down and listen for His voice. Know that we are here for anything. I am so proud to call you my Bestest. Love you to pieces. I have my phone glued to my hip ready to stand in where I can.
Nahum 1:7

Kristin (kekis) said...

Saw your post on TB and wanted to let you know that prayers are on the way. God is taking you to this, so He will bring you through this.

Syl said...

Would you mind if I shared this blogpost on my FB with friends and family?

PS I sent you an email yesterday

Lindsey B said...

Please do share this. The more people thinking about, and praying for, Kate the better. To those of you that have asked "how can we help" I will be posting about that within the next few days. Thank you for all of your support.

Brandi said...

So many thoughts and prayers are being sent your way.

Emily said...

praying, praying, praying. hugs, mama.

Momma Wilson said...

My thoughts and prayers are going out to you and your little girl!!!

Kori said...

Keeping sweet Kate and your family in my prayers!!!

Kori said...

Keeping sweet Kate and your family in my prayers!!!

Jessica said...

Oh Baby Kate...I am praying for you right now & always!!!

Lindsay said...

I'm so sorry to hear this news. Will be praying for Sweet Kate and your family!

Courtney said...

I've been following your blog for a while now as my daughter and Kate are very close in age. I am so terribly sorry to hear this and will absolutely pray for sweetie Kate and your family! My heart aches for you.

KariBeth and Josh Gentry said...

I am so sorry to hear this!! I will definitely be praying for Kate and passing along the prayers to everyone!

Jennifer said...

I'm so sorry! This is something that breaks my heart just imagining. I will be praying.

Brandi L. said...

I am so sorry. I will be praying with every ounce of energy for your sweet Kate, you and your family.

Paulsen Mommy said...

I'm praying now for your sweet Kate and will continue to pray. Keep clinging to our big God we serve. *hugs*

Kristi said...

(((hugs))) I will continue to keep Kate and you and your family in my prayers.

Melissa said...

I just found your blog. I am saying a big prayer for your little Kate. Its so hard to see your baby girl face health issues, I know from experience. Saying big prayers for you. Stay strong.

Sammy. said...

May God bless your family and may he pull you guys through. I will pray for Kate on a nightly basis.

Danielle and Jesse said...

I have been reading your blog since before Kate was born since my baby was due in August as well, even though I ended up having an early July baby. I will keep your family and Kate in my prayers. She is a beautiful baby!!!

J.Mo said...

Oy Lindsey, I am so sorry for the struggles your family has experienced so far, and for those to come. Sick babies are the worst, and I can only imagine what you must be going through. Prayers going up for you all daily, and I'll definitely spread the word to get as many prayers as possible. <3 Love to you and Kate

Tami said...

Your baby and your entire family will be in my prayers!

Clay said...

I'm praying for all of yall! Let me know when and where I can get screened for bone marrow donation... I'd be more than happy to donate if I am a match!


Sincerely,

Clay

kris said...

Hi Lindsey,

I stumbled upon your blog last summer, and have been checking in ever since. Your daughter is so precious and beautiful! I have been praying for Kate and for your family's strength and will continue to do so. I signed up yesterday to be a bone marrow donor.

Love and prayers from New Jersey,
Kristen

Tammy @BeatriceBanks said...

Prayers going up for Kate!
Hugs,
Tammy

Claire said...

Praying for you all!

Cxx

Teresa @ Grammy Girlfriend said...

Sending many prayers....

Molly Jean said...

Came across your blog randomly through TN and just wanted to say I'm keeping you in my prayers. I am on the bone marrow donation list and pray to God I get a call soon knowing I'm a match.

I can only pray it's for your little girl.

Kristin said...

Praying.praying.praying.

ps. I had written Jeremiah 29:11 on a notecard and had it on my bathroom mirror the time we were ttc. It's a great verse.

Me said...

I am so sad to read this. I will keep your family in my thoughts!

MommaM said...

I saw your badge on TB, but wasn't sure what was going on. I am so sorry to hear about Kate. :( My prayers go out to her and your family!

I know you don't know me, but would you be alright if I posted about bone marrow donation on my blog? I feel a call to spread the word.

(http://homefor3.blogspot.com)

RHEA123 said...

Hi!
I know all about what you are going through, my little cousin Ben was diagnosed with this after almost 2 1/2 years of searching for what he had. This summer he had a bone marrow transplant, it was so hard. But I also claimed this verse. I stumbled upon your page when I was searching for more info on CAMT. My prayers go to adorable Kate, and your family.
Much much love.
Rhea

RHEA123 said...

http://meganhoelscher.wordpress.com/2011/01/20/the-kid/
heres a link to my cousins blog if you want to read about his journey.

and heres a link to Ben's journey through his transplant.
http://www.caringbridge.org/visit/benjaminmattox

Marie said...

Hi Lindsey. So sorry to hear. My little angel had the excact diagnoses!!!! If interested we can chat privatly on facebook. I am Marie Moolmal Phillips! I travelled the road and all I can say, put every day in GOD's hands! Whould love to make contact with you?

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