Success after IF

T&Ps needed - A Kate Update

Kate was officially diagnosed with a rare genetic type of bone marrow failure yesterday (congenital amegakaryocyctic thrombocytopenia) and we were informed that she needs to have a complete bone marrow transplant ASAP.

We obviously knew we were facing hematology issues but, I really didn't think she would be on the "worst case" end of the bone marrow failure spectrum.

We don't know a lot right now other than her diagnosis.  I am waiting on the transplant team to give us a call so we can discuss details and such.  Kate is being typed this week so that she can be listed on the national registry as soon as possible. 

She will undergo chemo but it will not be started until a donor has been identified.  We also don't know how intensive her chemo regimen will be. 

We've got tons of appointments and tests while we sit and wait for a donor - an MRI, eye tests (this syndrome has some impacts on vision), another bone marrow biopsy, and more blood draws that I want to think about.

We are asking for any and all thoughts and prayers for Kate - and for Alex and I as we deal with this.  Add Kate to a prayer list, mention her in your Bible study, please get the word out that my sweet girl needs to be covered in prayer right now.

While we are questioning why this is our cross to bear, we realize we are blessed.  We have an amazing support system, we have a good outlook for Kate's future, and more importantly we serve a mighty God that will help us get through this.

We are also thankful to be 15 minutes away from the top pediatric bone marrow transplant center in the country.  God knew what he was doing when He moved us to Houston 5 years ago.

Kate is a fighter ? she proved that a long time ago ? she will win, I just hate that she has to fight?

I will keep everyone posted as we learn more.

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Re: T&Ps needed - A Kate Update

  • OH no, poor Kate and poor mommy & daddy. Lots of T&P coming her way as you deal with all of this.
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  • I was just going to page you... Oh Linds, I am so sorry. While I am glad you guys finally have a diagnosis, this is not the news anyone wanted. Kate is already part of our bedtime prayers and we will be praying that a donor is identified quickly and that all of you will be covered in God's peace and strength as you tackle each day of this. Please please let us know if there is anything we can do. Kate is so blessed to have you for her mother...you are stronger than you know. (((hugs)))
    Brought to you by IVF, ICSI, limited fert, and oocyte cryopreservation.
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  • Prayers to you and your family and especially sweet little Kate.  I'm glad you are in the right place for treatment.  My husband and I are both on the national bone marrow donor registry, they had a thing at our church a few years ago, hopefully you can get everyone you know to get on the registry.

    I pray that Kate finds a donor match soon and this nightmare goes faster and easier than expected.

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    TTC #2 with PCOS since September 2009
    BFP, Femara 7.5mg, Ovidrel, IUI. Beta #1 17dpIUI -495 Beta #2 19dpIUI-1031
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  • LCB, as I said, I'm O+. if you would like me to be tested, please let me know. I truly mean that.
    Dx: MFI, DOR, 9 Fibroids and homozygous MTHFR

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  • I am so sorry you and your family are going through this.  I just can't imagine how you must feel.  I have sent prayers up for you and I am emailing our prayer team at church to add all of you to their list.  Keep us updated!
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  • I'm so sorry about all of this! Keeping your family in my prayers.

    Diagnosed PCOS & MFI-Success with IUI
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  • oh no :(  I'm speechless.  My thoughts are with you guys and I will share your story with my mom and her prayer group. 
  • I am so sorry to hear all this.  It sounds like you have a really positive attitude, which is wonderful.  I will be thinking of Kate and your family.
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  • I'm very sorry she's dealing with this, my thoughts are with you all.
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  • Lots and lots of T&P coming to you and Kate!! 
    ****
  • While I'm relieved for you to finally have a diagnosis, I'm very sorry to hear it's something quite serious.  At the same time, it's great to know that her prognosis is good with the bone marrow transplant.  I am on the donor registry, but cannot donate while pregnant.  :(  So much for all of you to face in the coming months...I hope it all goes well and that she is matched very soon!!  Hugs and lots of support coming your way during this trying time, LCB.
    Childhood cancer (DH) + chemo + radiation = 0 sperm.
    LO #1 - 1 unmedicated/self-monitored IUI w/ donor sperm.
    LO #2 - 1 m/c, 2 BFNs, 4th IUI worked (unmedicated/self-monitored with new donor sperm).
    Life is beautiful!

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  • I just can't understand why things like this happen to such wonderful people. SOmetimes life is truly unfair. I know that you are one of the strongest people that I "Know" and as one of my friends just told me..that god never gives you more then you can handel and I truly believe this.

    I truly hope they are able to find a donor match soon. Is there anyway that some of us on the bump can find out what blood types we are and see if we could be pontential matches? 

    You and your family are in my thoughts..

  • I will be praying for you and sending good thoughts your way.  Kate is in great hands with you as her mom.  I don't "know" you but, I read your blog and it is evident that she is loved by so many people.  I am a true believer in the power of prayer and I know she will get through this (and you will too).
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  • I'm so sorry she has to go through this.  I will keep her (and your family) in my prayers. Good luck and God's blessings to you!
  • I am so sorry this is Kate's path.  Loads of thoughts and prayers going out to Kate, you and your DH.
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  • We will absolutely keep Kate, you, your husband and your family in our thoughts and prayers. I will add you to our prayer list at church as well. 


    TTC #2 since June '08

    ~*DD 10.21.07*~

    dx unexplained

    IUI #1-4 BFN

    IVF#1 June 2011 BFN

    IVF#2 Dec 2011

    Beta#1 12/21 : 812 Beta#2 12/23 : 1634

    EDD 8/25

    *PAIFW/SAIFW*

  • I am so sorry to hear Kate's diagnosis is so serious but glad that prognosis is good with a bone marrow transplant.  Kate and your whole family is in my prayers.
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  • LCB - I am so sorry to hear about Kate. :( I check in every now and then and have tried to follow up on her. You are so right that it's so hard to watch your baby suffer. Our good friend's little girl has fought a brain tumor these last 1 1/2 years and it is just heartbreaking to watch little ones go through such a hard time. You should know how tough these little gals are though and Kate will fight through and amaze you and others everyday! Stay strong (as much as possible) through all of this. I know that's almost impossible to even say right now though.......

     

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  • I just wanted to sign in.  You all are in my thoughts and let me know if there is anything I can do.
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  • Oh my, hugs to you and your family. 

    I recently joined the marrow donation registry...I really hope others will as well so that we can find a match for Kate and others just like her out there.

    My two PCOS miracles! Lilypie Kids Birthday tickersLilypie Kids Birthday tickers
  • I will be keeping that sweet little girl, you and your H in my thoughts and prayers.  She is a fighter and has a very strong mama to help her through this.  
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  • Poor baby girl :( lots of prayers for her and mom and dad, too. I'm in dfw, so if you want me to be tested, I would be more than happy to! Seriously, pm info as soon as you know anything.
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  • Thinking of you and your family. 
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  • Sending you and your family tons of thoughts and prayers. ((hugs))
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  • Love you!
    DX: PCOS * Success with IVF

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  • I have tears in my eyes - for your courage and strength, and Kate's.  If people want to know if they could be a match how would they do it - register at Be the Match?  I am registered but is that enough?  I am O+. 

    I will add you to our prayer lists.  You have your marching orders from God now - fight this fight girl, keep hope, let your faith bring you peace and take solace in your quiet moments as a family among this chaos. 

    Whatever at all we can do, please call on us; allow us the opportunity to help and serve as well. 

  • Sending T&P's your way.

    After 3 years of infertility we were blessed with twin girls through private infant adoption.
    Forever our's October 17th 2012
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  • i will send prayers, and i will join the national bone marrow registry today.

    sending all of the hugs and thoughts and prayers that i have. i can't imagine how hard this must be. good for you for having such an amazing attitude. 

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  • So sorry to hear this and that your sweet baby has to go through this.  Constant thoughts and prayers are headed your way.
  • My heart is completely broken for you. I am so sorry your sweet girl is going through this. Continued thoughts and prayers for the Boggan Family.
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  • naflmjnaflmj member
    Big hugs to you all. I will keep you and your family in my T&P's.
    "Normal day, let me be aware of the treasured day you are. Let me learn from you, love you, bless you before you depart...let me hold you while I may."

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    TTC #1- unexplained...lost left ovary 4/07 IUI #1 2/10/09-BFN IUI #2 3/5/09-BFN IVF # 1-BFP

    TTC#2- FET 4/7/11 BFP, Natural mc 5/5/11 IVF#2 ER 9/13/11, ET 9/16/11, Beta #1 9/27/11 BFP 254 Beta #2 9/30/11 793 -Twins!

  • My thoughts are with you, Alex and Kate!  

    Please let us know if we can do anything - get tested to see if we match etc.   

  • Wow.  Thoughts and prayers coming.

    I  know you will keep us posted but please let us know how we can help.  I am sure there are plenty of us that will be willing to get tested for a match if you have challenges with that.  

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  • kegkeg member

    I am so sorry!  While I know there is probably a small amount of comfort finally having an answer, this is definitely not what you wanted to be dealing with.  You all will definitely be in my thoughts and prayers.   

    2004-Started TTC; Nov 2007-Lap with endo removed; Jan 2008-Ectopic (mtx); April 2008-IVF #1 (bfp, twin girls); March 2011-FET (cp); June 2012-IVF #2 (bfp, singleton, EDD 3-19-12)

    ***Twin fraternal girls born at 35w6d in 12/2008***

  • Oh my goodness, I am so sorry you little Kate is going to have to go through so much. ((HUGS)) to you and your family.
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  • I'm so sorry to hear this, I've been so concerned for you guys since I saw your post on Facebook yesterday. My husband and I will be keeping you in our thoughts through this difficult time. I would be a donor ASAP if I could, but I'm not medically able to be one. :(

    Do you know Kate's blood type? My immediate family has some of the more uncommon types (A+/-, B+) and I'm sure I could convince them to get added to the registry if they have her type.

    Lots of love and strength to you guys. -hugs-
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  • I am so sorry to hear this was the answer to all the questions.  Lots of prayers for all of you as you proceed.  You are right that good support makes all the difference in the world!
  • This is tough, I'm sorry you have to deal with this. Sending my t&ps your way.
    TTC since 8/07 DX - Severe MFI/azoospermia & MTHFR/ TESEs found sperm - 7/08 & 6/09/ 12/08 - IVF#1 - BFN/ 6/09 - IVF #2 - cancelled due to OHSS risk (had retrieval)/ 7/09 - FET #1 - BFN/ 9/09 - FET #2 - BFN/ 11/09 - IVF #3 with new RE cancelled twice - 10/09 & 11/09/ 1/10 - IVF #3 take 3 - BFN/ 4/10 - IVF #4 - first ever BFP on 5/13/10!!! 108 @ 10dp3dt/ 2nd beta 311!/ sono on 5/28/10 said TWINS!!!! Lilypie Second Birthday tickers
  • Lots of prayers for Kate and you and Alex. I hope that you have support around you to get you through this. Hugs!

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    Married 8.13.2005, M/C 12/8/06- 5 weeks, M/C 2/27/07- 7 weeks, M/C w/ D&C 8/10/09-6.5 weeks *Charles Lawrence born 5/2/08 @ 3:14am, 7lb 8oz, 20.5 inches. Clomid, Crinone and baby aspirin. *Alexandra Claire born 9/14/10 @ 9:52am 6lb 14oz, 20.5 inches. Femara, Crinone and baby aspirin. Lilypie Fourth Birthday tickers
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  • I am so sorry.  I hope that Kate's treatment goes well and that you are all lifted up by all the people who are thinking and praying for your family.
    TTK 9/06 / TTC 10/08 / Twins 12/11 / Life Blog
    5 REs + 3 surgical hysteroscopies for septum/lap + 3 failed IUIs
    IVF w/ICSI/AH & acu = BFP!, unexplained spontaneous m/c @ 8w2d (our little girl),
    FET w/acu = BFP!, B/G twins!, lost MP @19w, dx w/funneling cervix @20w,
    twins nearly lost to IC @21w, saved by rescue cerclage, 17P & 16w of bedrest
    Our twins born @36w4d via CS when A came foot first

    Thankful for every day

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