They will scope his stomach and his colon and bring back a sample of the tissue in each to examine.
I don't know what to hope for...that they find something that will give us a clue to why he is 17 years old and only weighs 97 lbs or that they don't find anything and we just march on like this is normal?
I'm tired.
He is tired.
This has been such a LONG journey!
Two years ago April, he had his bone marrow biopsy for Myelodysplastic Syndrome. A rare blood disorder that, if left untreated, turns to a fast and fatal form of leukemia.
We caught it in time, and infused the life giving blood from two umbilical cord donors into his limp body that saved him.
They saved him, but he developed Graft vs. Host Disease (GVHD). His body and the new cells refuse to co-exist in peace. They fight, they rage, they reek havoc in his system causing rashes, stomach issues, fatigue, etc.
So today, they will be looking for signs of GVHD unrest in his stomach and colon.
How long?
Will his cells never learn to cooperate? To even just agree to disagree?
Will their fighting reduce him to skin and bones....wear him out completely?
I shouldn't worry or be anxious. Considering all we have been through, this is small potatoes. I don't know why this has hit me so hard the past couple of weeks-??
Its selfish, I know. But maybe its the sense that for his sake, and mine, he is 17. He should be planning his future, spreading his wings, gaining strength to launch out of the nest. And yet, he grows weaker...
Over the past 5 years, we have 'launched' 6 1/2 kids (one is in process). Its rough. We made it, but it was rocky. We made a few mistakes, learned a few tricks and are just getting familiar with that scene.
Now, I may need to learn how to 'un-launch'. And honestly, I don't want to!
If he doesn't launch, that means he isn't doing well.
That means he is still fighting for his life.
Its not behind us, ITS still with us like a bad smell!
How long, LORD?!!......how long....?
This is at a Make-a-Wish event.
Silly boy!
All immunizations went out of his system when they kill his
bone marrow.
So we have to start all over :(
I don't know how many GALLONS of blood they have
taken out of the poor boy?!!!
This was at his two year check.
He has such a good attitude about it all!
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