Ignorance is Bliss

Willem is doing well today.  Surgeon said that he is pleased with Willem's recovery from the surgery thus far.  Willem appears to be in good spirits and is currently watching Tom & Jerry and laughing.

I've been avoiding reading about what is involved in a bone marrow transplant (BMT) for a good reason.  I should've avoided it a little longer.  My poor little man has a long way to go yet and his recovery from this surgery is critical.

Because we need more stress: Our insurance (Tri-Care) has refused to pay for Willem's bone marrow transplant.

http://www.cumc.columbia.edu/dept/medicine/bonemarrow/bmtinfo.html

So Far So Good

Willem's foley catheter was taken out this morning much to his relief.  He was happy to pee in the "unerall" (what he calls the urinal) again.

Still no fevers and the incision appears to be healing nicely -- an indicator (I hope) of the healing that's going on on the inside.

Willem walked a lap around the ward today and is in good spirits -- a change from last night.

Post Op

Surgery went well; "...better than expected" were the words the surgeon used.  Now we wait.  The big concern is how well Willem heals after the surgery.  Willem's particular HLH is an anomaly so everything being done comes with a degree of uncertainty.  For now we take it hour by hour and day by day.

Willem is alert and watching television.  He is in a lot of pain and counting the minutes before he can press his morphine button again.

This is my first time back at the hospital since I left in September and I'm trying not to feel like he's still as sick as he was back then.  Sleeping peacefully now... Such a beautiful boy.

Surgery Day: Waiting for His Surgery Prep Room at Helen DeVos Children's Hospital

Not a care in the world and very anxious for the surgery.  He is so excited at the prospect of being able to eat solid foods again and to be rid of the bag and tube pictured in the photo.  We cannot go anywhere without the bag and tube.  Not shown here is the backpack that holds the formula and feeding tube that also has to go with him everywhere. 

Not A Care In the World and Singing

Willem was smiley, extremely talkative, and, when he didn't think we were listening, he was singing.  When asked if he was excited about today's surgery he smiled and simply said, "yes." Willem could be seen skipping to the surgery prep room after being weighed.  The boy is anxious to eat real food again and anxious to get rid of some more tubes. We are anxiously awaiting the same.

The news came to us yesterday that his third of six genetic tests came back negative for Familial HLH.  We were also informed that Willem's six year old sister will definitely be Willem's bone marrow donor.

Thank you uncle Greg for driving up here from Chicago to be with us.  We love you!

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.

Some of the Meds