Happy Tuesday friends!
If there's one thing I've learned on this crazy path of healing and dealing with symptoms, diagnosis', reactions, labs, medicine...etc. Is to ask. Push. Ask more, and never stop trying to help the one you love.
Kris has had Graft Versus Host Disease since the very first days of "Engraftment" (Engraftment is when the body accepts the donor cells and are finally welcomed into the recipients blood and marrow, growing on their own) When this happens, something called Graft Versus Host can flare up. Which is a double edged sword. It's generally a booger. It can be painful. If you can remember the first few days he began to experience this natural "phenomenon" it was a gnarly rash on his back. Extremely painful. One doctor took one look and proclaimed "GVHD", while others would shake their head and say "Radiation"- Some nurses would even smile and try to remark to us "Tattoo's". We'd shut that down real quick.
It was GHVD. And with GVHD it's actually kind of a good thing. Donor cells attacking the old Kris cells. Means one thing to me. Fight ANY chance of that stupid C word. Take it. Rash it. Bite it. Tear it. Kill it.
The rash ended. Then the stomach flared up.
One endoscopy in March showed evidence of it in his gut.
Between the almost 30 pills a day he took, they really needed to rule this out.
MEANING- (Does he feel like shit-and shit like a boss all day every day because of allll the meds or....ghvd..)
Fast forward to almost 8 months later. He still has issues with his tummy. It just always hurts. Mostly first thing in the morning. And sometimes in the middle of the night. (He has not slept all night without visiting el toilet in el middle of el night since day one)
I've read everything and anything that could help it. And really, the only thing is steroids. He hates steroids.
He still takes one just for his gut GHVD. It's called Budesonide. He takes three a day. A balance for his gut. The other steroid (Prednisone) is down to just 5mg. He's done well tolerating that withdrawal.
The GVHD in his gut is considered Chronic. At first the diagnosis was Acute (meaning comes on quick, and leaves) This isn't leaving. It does fluctuate. But hasn't left. This is where some mornings are "rougher" than others. This is where sometimes he pushes hard to just get up and going. Something that is hard to comprehend when you see him out and about on a boat, or holding a pole.
He's pushing to live normal. To be normal. To be a handsome boyfriend. A doting fun friend. A lover and a giver.
Still, this tummy issue just stays.
Inside, I think.....come on German donor boy....keep fighting those old Kris cells away.
This morning we arrived at his Endoscopy bright and early. His sweet dimpled smile guiding the way. With no food in his stomach and a head ache to boot, he still kept his good spirit.
They call his name in the waiting room. Both of us stand. I still haul my mama warrior bag. Filled with wipies, med sheets, records, notes, books, soft blankets, teddy bears, stickers..haha - Kidding on the last two.
They call his name, and ask that I stay in the waiting room, and they'd call me in two hours.
O. K.
We both stare at one another, kind of almost chuckling. Because if they would of caught me on a bad day, full moon shark week, that shit wouldn't of flew as it did.
I sat his back pack down off my back. My mama bag down. Smiled at those around me.
Made friends with a lady named Rose next to me.
And waited.
My staring problem growing bigger than ever trying to figure out why this room was filled with so many people.
What was wrong with her. Or him. Or man, that poor little couple navigating here alone.
He holding her purse. Her holding her cane. Them doing this medical thing.
These days, these purpose-filled moments are happening for a reason.
The season is changing. This one year of fluttering around him with my wings spread wide are coming to a better, easier flight. God is working through this with me. With him. For him. For me.
I pray for peace in my heart. To heal my son. For him. For his girlfriend. For his sister. For his Dad. For his friends. I want to see him out and about.
I pray each and every single day for strength. I mostly pray for PEACE. For peace of whatever the plan should be.
To be at peace.
What I will never do is stop my ways of being proactive, versus reactive.
Keeping on top of things to see if all the stars are aligned the way they should be.
And right now. Right now, it seems he's on a good path. It's not easy some days.
But man, his smile sure proves different.
Love. Strength. Smiles. Dimples. Fuck Cancer hats that have more meaning to so many people nowadays. One of my favorite words that seems as though might be too aggressive, yet when you've watched this stuff grow and take down families, you understand.
Proactive versus reactive.
And prayer.
We'll wait for the results. Might have med changes. Most likely be told the same.
But for today, we remind ourselves that those stem cells growing and taking over Kris' old cells are just helping fight that ugly C word.
My London friend emailing early this morning with the words none of us want to deal with. Headed back to the hospital. Sajjad has swollen lymph-nodes. And a cough.
Of course us mama's offering love back and forth across the pond via email. So wild.
I say, it's a virus. Because come-on, you've come so far Sajjad!!!
Big love, lots of hugs to you all.
Go spread smiles. Because you NEVER KNOW WHO NEEDS TO SEE AND FEEL IT!
Any Van Morrison fans out there?
Here's my dedication to you.
This Mama Lisa
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