Willem -- only days before he was stricken with HLH -- leisurely walking, straw in mouth, not a care in the world. A healthy 9 year old boy.

Monday, January 16, 2012

NO WAR FOR DADDY

My time away from my son has been an emotional challenge unlike any I have endured and I reached my absolute limit.  With Willem's recovery reaching a plateau, and the upcoming surgeries, I requested to be sent home to be with my son and the Army obliged. No more war for me. The downside is that our family will now be struggling financially and my stress and guilt level increase. Nothing is ever easy: Go to war and suffer emotionally to provide financially or suffer financially to be home with my son. To the reader, I imagine that the decision is an easy one.

Surgery is tomorrow (January 17) at 1:10PM. It will take 3+ hours and Willem will be hospitalized anywhere between 5 to 10 days.  This surgery, if all goes well, will finally allow Willem to eat real food. The surgery in a nutshell: Imagine the intestine as an S. The surgeon will cut a hole in the underside of the top part of the S and in the top of the middle part of the S and then connect the two holes. The upper left (side) part of the S is the damaged portion of the intestine that is not currently allowing food to pass so, after the surgery, the damaged area will be bypassed -- thus allowing solid food to continue through the system. To use the doctors' repeated statement: I am cautiously optimistic.

Still awaiting the results of Liliana's blood-work to ensure that she can indeed be the donor for Willem's bone marrow transplant. My poor babies. To think that my little six-year-old baby girl may suffer in an attempt to save the life of her older brother. And it just occurred to me that we never even asked her if she wanted to be his donor. 'Wonder if we should.

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THANK YOUs
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  • Thank you to the Palmer Lake VFW 3915 Ladies Auxilary for their donation. Thank you for thinking of us and thank you for your prayers.
  • Thank you to the Ada Bible Church. Thank you for thinking of us.
  • Thank you Kathy, Tom, Emily, Grace and Andrew.  Thanks a latte (sorry for the pun -- I couldn't resist).
  • Thank you Mrs. Otto.  Wow!
  • Thank you Mrs. Meltzer
  • Thank you aunt Milly
  • Thank you Rick and Mary
  • Thank you uncle John and aunt Cynth
  • Thank you aunt Ami
Thank you everyone!  To all of the contributors, throughout this entire ordeal, you have made our lives easier and more enjoyable in one way or another.  As you can imagine, our lives have changed dramatically and the stress has been unbearable at times -- you have helped ease the suffering.  Thank you.

1 comment:

  1. My name is Kelly Marsh and my daughter Hannah was diagnosed with HLH in 2008. She was almost 6 years old at the time. I saw your link on the Histio family page on FB and wanted to reach out to you.

    My daughter is a 3 year BMT survivor. We were living in Florida at the time, but the more research I did, I knew we had to get her to Cincinnati to see the expert on HLH, Dr. Filipovich, as soon as possible.

    I just wanted you to know that there is hope, and there are survivors . . . our daughter is one of them!I urge you to join the HLH Survivors group here on Facebook as well. you will find many families that can offer support and advice.

    I've included the link to Hannah's You Tube video as well as her carepage.

    I realize this is a very direct approach from someone you've never met, I was thrown into the HLH world over 3 years ago and I know how you all are feeling. There is a lot of support in the HLH Survivors group, and we are all here to lend an ear, etc.

    You can call me anytime, day or night. The same goes for your family members. You do not have to go through this alone.

    941-350-3767
    My direct email is KelBelleFL@aol.com

    http://www.youtube.com/watch?v=A0I48X6YrDI

    ReplyDelete