James Update (AW) — The Bump
January 2014 Moms

James Update (AW)

Hi Ladies - it's been a long time since I updated - everyone has probably forgotten us by now !! - but for those who remember me / James, we got some big news this week and I'm finally trying to come back to the land of the living.  Last time I updated, we had the diagnosis of HLH and were trying to wean James from the ventilator and were in the middle of chemo.  Fast forward several weeks: James' breathing is still a struggle because his lungs were so badly damaged in the initial illness, but after 2 false starts (he's now been intubated a total of four times - don't get me started) we're finally on CPAP with regular cannula trials that are going well.

And even in the face of this craziness, this week has been insane.  When we transferred to our current hospital, their first step was to sequence the DNA of me, my husband and James to figure out whether the HLH was genetic, because genetic HLH requires a bone marrow transplant for a cure.  Everyone was sure that James' HLH must be genetic because it presented before 2 months of age, and we thought we were in a terrible situation because the transplant doctors did not think James could survive a transplant - so either he would die from HLH (which is 100% fatal) or die from an illness associated with his transplant.  Either way, on Monday I started looking into hospice care for infants, which is literally the most unspeakable thing I've ever done.

And then yesterday we received the DNA results ... which show that James has something very rare called Kabuki Syndrome.  His cleft palate, pelvic kidney and anal atresia are all explained by Kabuki, and his HLH is secondary (not genetic) and related to the Kabuki (which can have immune system involvement, though the association is not well understood).  He had his last chemo treatment today.  The doctors now say that James does not need a bone marrow transplant to finish treatment, although they will still watch him carefully because he is literally the first kid in recorded medical history to have Kabuki Syndrome with secondary HLH.  In other words, he's now very likely to survive.  And while he is going to need a lot of therapy and rehabilitation after all of this, has the chance of being a happy kid :)

At some point I will hopefully be able to share with you guys more of the craziness of the past months.  But for now, I have to stop thinking of myself as giving James palliative care, and start thinking of myself as a mom of Jan '14 baby, because he's going to be here and with us for a long time.  So hopefully you guys don't mind having me back... our experiences are still going to be pretty different from yours, but since I've been through it all before with Max, I can still relate!  xoxo

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DS1 born 08.02.11

DS2 born 12.05.13

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Re: James Update (AW)

  • What a happy update! I look forward to seeing you around more!
    BFP #1 (7/13/12) MC (8/14) 9 weeks. D & C 8/17.
    BFP #2 (5/18/13) due 1/26/14. Grow baby grow!
    Its a surprise! Team green!


    vstevens
  • @vstevens I am so happy to hear from you and more importantly hear this amazing update! BIG hugs mama! Sending James prayers for continued good news. Know that we think of you often and hope that we'll be seeing more of you.

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       Baby Birthday Ticker Ticker 
     "Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus." Philippians 4:6-7
    PgAL

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    vstevens[Deleted User]
  • What an update!! Glad to hear about the diagnosis and that all looks well!!
    vstevens
  • I'm SO happy to read this update! I think about you and James all the time! Continuing to send many thoughts and prayers your way!

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    Missing Our July Sparkler
    BFP#1-11/12/12, MMC 1/16/13-baby stopped growing @ 9wks, found out at 13wks, D&E 1/25/13
    BFP#2-4/23/13 EDD-01/02/14 baby BOY born 12/31/13 Michael Cameron <3

    vstevens
  • You're not forgotten. This is great news! Big hugs to you for all you've been going through. Our current experience may not be the same as others here, but we of course want to hear updates and be of support to you when we can. Hoping James continues to make great progress.
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    mutt_zps2fb5f039-1_zps7220f27c
    BFP 11.8.12 * EDD 7.17.13 * MC 12.20.12
    Baby Birthday Ticker Ticker
     photo bump_zpsf1e8435c.jpgRIP Post Count
     
    vstevens
  • I'm so happy for you that you have received such wonderful news! I've been thinking about you and James recently. I will continue to keep you both in my thoughts and prayers, and look forward to hearing more updates on James's progress!
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    Married 3/17/2005
    M/C #1 2005 - 6wks
    M/C #2 2006 - 7wks
    M/C #3 2008 - 11wks
    Baby Aeneas Born 1/20/2014
    vstevens
  • We've been thinking about you! This is so good to hear! Big hugs mama!!!!!!!
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    Baby Birthday Ticker Ticker
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    vstevens
  • This s amazing news, v! Brought a smoke to my face!!!

    Of course we want you back here. we have missed you and James! Can't wait to hear more about him!
    image image
    Baby Chugging born 12.28.13
    induction due to HELLP
     image

    vstevens[Deleted User]
  • OMG @vstevens, there could not have been a post that could make me any happier than this one. I am so, so, so happy to read this news.

    vstevens
  • This s amazing news, v! Brought a smoke to my face!!! Of course we want you back here. we have missed you and James! Can't wait to hear more about him!
    Well now you've done it @ChuggingWater, taken a beautiful moment and made it about smoking the drugs. Sheesh.

    :)



    vstevens[Deleted User][Deleted User]daltosostarby
  • That's amazing news! I'm so glad you're back and that things are looking up. I can't even begin to comprehend how difficult the past couple of months have been. But you, baby James, and your family will continue to be in my thoughts in hopes that things continue to get better!
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    vstevens
  • Wonderful news!! Still sending thoughts and prayers!!
  • Good to hear from you! You are certainly not forgotten! Thank you for the update, and I'm glad it's so good!
    ********************************************************************************************************

    DS1 born 11/3/06   *   DS2 born 3/29/08   *   DD born 3/15/11  

    Scarlett Mae born 1/14/14                         Our family is now complete!

      

  • So glad you updated! We were all wondering how you and James were doing. That sounds like some amazing news. Big hugs for all that you've been through.
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    Jacob & Audra - married since 05.28.11
    Emma Kate - born 10.16.03 @ 29 weeks, weighed 1lb 13oz and 13.5" long.
    Ozzy Joseph - born 11.01.13 @ 31 weeks, weighed 3lbs 7oz and 16" long.
    TTC #3
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  • OMG this is wonderful news!!
    July 2015 Jan Siggy Challenge: Snow Fails/Funnies

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    BFP #5 11/15/14, Team Green EDD 7/22/15

    BFP #4 4/30/13, baby girl born med-free Jan. 2014

    BFP #3 9/24/12, Missed m/c at 9w1d (baby measured 8w5d)

    BFP #2 9/23/10, healthy baby girl born med-free June 2011

    BFP #1 5/21/10, Missed m/c at 10w4d (baby measured 8wks), D&C 6/29/10
     
    "Life is like a camera, just focus on what's important and capture the good times, develop from the negatives and if things don't work out, just
    take another shot."

  • cnctfcnctf
    250 Answers 500 Love Its 1000 Comments First Anniversary
    member
    Awesome news!! Thoughts and prayers that James continues to do well!!
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    Lilypie First Birthday tickers
  • Best news ever!!! So very happy for you and James!!

    @chuggingwater Pass the smoke!!!
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  • That is such fantastic news!!
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    Lilypie Third Birthday tickers Lilypie First Birthday tickers  
  • PiachPiach
    Fifth Anniversary 250 Love Its 500 Comments Photogenic
    member
    So glad to hear your good news!

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    Baby Birthday Ticker Ticker

    BFP 10/8/12 | Missed Miscarriage - D&C 11/12/12

    Baby Birthday Ticker Ticker

     

  • Great news! Continued T&P's for you and your family!

    Image and video hosting by TinyPicImage and video hosting by TinyPicImage and video hosting by TinyPic

     Married: 4/2/13

    DS born 12/19/13

    Baby Birthday Ticker Ticker

     

  • I wish I could give you a big hug right now. With everything you went through, I'm so happy to hear James is better and his health is positive.
    Baby Birthday Ticker Ticker
  • Such happy news! T & Ps for James' health and for you.
    imageimageimage
  • This post made me smile!! I'm so so glad he's on the mend and your not having to looking at palliation and hospice but a full recovery. So happy for all of you!!
  • So happy for your positive update! I can't tell you how sorry I am for all you and James have gone through. I hope things only get better and better each day forward.
    Baby Boy #2
    Due Date 11/10/16
  • Congrats to you and James for being so brave through a difficult time. Best wishes for an easier time now!
    Baby Birthday Ticker Ticker 


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  • Wow @vstevens! What a great update! I am so sorry that you have been going through this. My thoughts and prayers are continually with you and your family. Keep us posted J14 momma!

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  • cja06cja06
    Ninth Anniversary 250 Answers 500 Love Its 1000 Comments
    member
    Wonderful news! So happy to hear it after all you have been through. Continued prayers are coming your way that it only gets better from here on out!


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  • Been thinking of you all, thank you for the update. Continuing to send you lots of hugs!
  • BabyHokie2014BabyHokie2014
    100 Comments 100 Love Its Third Anniversary Name Dropper
    member
    edited March 2014
    So happy to hear such great news!
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    Previously CarolynF17 - since 2010
    Due 1/24/2014 with LO#2
    BabyFetus Ticker
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  • What wonderful news to hear!!!! So happy for you and James!!!! Will continue to be thinking lots of positive thoughts for both of you!
  • So glad to read this update. Thank you for sharing with us!
     
  • That's wonderful! Continued prayers for baby James' health!
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    Lilypie First Birthday tickers

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     BFP #1 8/1/11, MMC 10/5/11, D&C 11/1/11
     BFP #2 5/28/13, EDD 1/17/14. Elliott - 12/31/13
  • km_mdkm_md
    10000 Comments 250 Answers Fifth Anniversary 500 Love Its
    member
    What a great update! I'm so glad that you got some good news. I can't even imagine looking into hospice for infants. Continuing to send love and positive healing vibes ((hugs))


  • Happy for such a positive update! Keeping you all in my thoughts and prayers!
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    J14's January Signature Challenge: Favorite Post-Delivery Indulgence

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    Our little Princess is due 1.29.14
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  • Wonderful news! Sending good thoughts your way! Hugs!
                                                                                                            

  • Such great news! Thinking of you guys.
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    My cat can read EKGs, can your human do that?
    ♥BFP#1 12-23-12, M/C 12-31-12 at 5w4d♥
    ♥BFP#2 05-09-13, EDD 01-15-14. C/S 12-23-13 at 36w5d for complete previa. Healthy baby boy♥
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  • Such awesome news! So happy for you! Praying the good news keeps coming!

    Babysizer Cravings Pregnancy Tracker
    BabyFetus Ticker
  • That's great news! Will keep you and James in our thoughts and prayers.
  • So sorry you are going through all this. I'm truly happy to hear the good news. Glad you will be able to take him home soon. Thinking of you and your baby boy!

    !!Jacob Noah was born 10/19/2013 at 27 weeks gestation, our little miracle!!





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