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16 Shadrach, Meshach, and Abednego answered and said to the king, “O Nebuchadnezzar, we have no need to answer you in this matter. 17 If this be so, our God whom we serve is able to deliver us from the burning fiery furnace, and he will deliver us out of your hand, O king.[d] 18 But if not, be it known to you, O king, that we will not serve your gods or worship the golden image that you have set up.”

The furnace has been lit.  Well, it’s been hot for quite a while but we can certainly feel it now.  Trey has been slowly getting more tired lately and even though he’s been on the appetite stimulant he doesn’t eat much.  His blood work has been ok but not great.  His eye lids have been a weird brown for a couple of weeks.  This weekend he has just been completely depleted.  Yesterday he started to say that “his leg hurt” much the same way (including tone of voice) that he did in the spring with “my bed is cold.”  Rachel and I both noticed his stomach being quite distended and some inner bruising (blue not brown…almost from the inside) in his upper chest where the second greatest mass is.  We knew he was going in for blood work today and hoped/prayed for the best.

We did not get the best…or even good.  Dr. Shaw used two dreaded phrases, “pain management” and “definite disease progression.”  They are giving him some platelets and even though he didn’t really “need” it, some red blood.  They are doing an x-ray as well.  Beyond that it’s all up in the air.

I could open the door further into our world and I guess I will.  Yesterday he was flipping out about his leg, wanting to but not being able to nap, missing mommy (she was running errands), and just being miserable.  I asked Bella to practice her cello and of course she refused.  Joe was playing with his Leggo’s and narrating some battle scene (using the super aggressive voice that drives me up a wall).  I gave Trey some Tylenol and waited for it to take effect.  I called Bella and Joe into the kitchen.  I talked with them and told them that it has to be confusing when you are so annoyed by Trey screaming and yelling and getting all of the attention while you yourself may be worried (if they weren’t, me saying that probably got the job done) about him.  I said that I would be careful to not over control them because I can’t control Trey.  I told them that the bottom line was that whatever they were feeling was ok.  No matter what, anger, frustration, scared, indifferent, etc…it’s ok.  We then hugged, the three of us.  Bella pulled in tight.  Joe was stiff, Momma’s boy.

As the day wore on (and the Tylenol took effect) Trey did ok.  I gave him a bath and he played a couple of games with Rachel while Bella and Joe showered and got ready for bed.  I noticed something about him throughout the afternoon and evening.  He would pause for just a hair, a quarter of second after every inhale and make the quietest of grunts/gasps/coughs.  It was the most gentle of “labored” breathing I’ve ever heard.

We gave him more Tylenol at bed time and he went to sleep pretty quickly.  He woke up around one (when it wore off) and I got up with him three times having given him more Tylenol on the second wake up.  He yelled at me to leave the room so I did.  He slept through the rest of the night and was ok this morning.  He and Rachel went to the hospital after dropping Joe off and I took Bella to school.  Then we got the news.

I have no doubt that God can heal my boy.  I also have no reason to believe that He will.  If that is a lack of faith (and I know that it is not and in contrast is quite faithful) then you have been called to “greater faith” for Trey and I implore you to pull out all the stops and go for it.  I don’t know were this leaves us.  Days?  Weeks?  Months seems out of the question but I’ve been very wrong before.  My mind is swirling but it’s ok.  I am concerned for Joe and Bella and sensitive to God leading me to say whatever whenever to them.  Details about the coming weeks will arise and be met by me and a host of you all.  I’m not really worried about that either.  In all honesty and for real I look for this…

23 And these three men, Shadrach, Meshach, and Abednego, fell bound into the burning fiery furnace.

24 Then King Nebuchadnezzar was astonished and rose up in haste. He declared to his counselors, “Did we not cast three men bound into the fire?” They answered and said to the king, “True, O king.” 25 He answered and said, “But I see four men unbound, walking in the midst of the fire, and they are not hurt; and the appearance of the fourth is like a son of the gods.”

God was with them IN that furnace.  He is (and will be) with me/us as it gets much…much hotter.  He will provide many a miracle in the coming days (healing a possibility but clearly and not nearly the only one).  I am and will be sad, I have and will be crying, I am now.  I will have to do things no one who hasn’t experienced it can imagine.  I will make mistakes.  I will run the gamut of emotions.  However, more than anything…anything else, I know that He will be with me in this coming furnace.

Many of you have said, “Is there anything I can do please let me know.”  I beg of you to do this.  Watch us, watch me, watch what God does.  Don’t just shake your head and feel bad (I appreciate you sharing in our sadness mind you).  Don’t think that we are anything special (atypical?  Sure) but realize, please realize that it is NOT US!  It is God.  He is real.  He does love us.  He loves you just as much.  Please watch us and instead of saying THEY have great faith instead say “I want that faith.”  You most certainly can have it, it’s available to everyone.  I am speaking to all of you but directly to a few of you specifically.  It would mean the world to me if you would have an open, honest, and very much so vulnerable conversation with yourself and God.

So…we’ll see.  I love and appreciate you all.  Feel free to share this however you’d like.  I/we’ll keep you updated.


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