I have a prescription in my binder. My Mama Warrior Binder. The one I carry around, and have since Day 1 of transplant. In that binder carries important documents. Summary sheets showing inclinations and declination. This binder carries a prescription recently offered to my son. For depression.
Before he was discharged last week I had a long conversation with his PA. (Physician Assistant)-She was on his side. She knew his outdoors ways. Ants in his pants, and always out on the water. To be slammed down. Hard. She's one that I have felt from day one is simply kick ass, and thee most important element in this journey. She's fist bumped him from the very day we met her, and always cracked jokes about his tattoos. Never passing judgement, even when at times he had what I swore was truth serum flowing through his IV. If I could share with you what he shared with medical/clerical teams, you'd pee your pants. I almost shit mine. Several times.
We arrived home on Sunday evening...and I kind of felt like a bird landing on the edge of a nest.
He wasn't home. I took the time to unpack my bags, and admire a super clean house- thank you Jen- I've always said, it's the little things. And to me, returning to a clean house goes down as actually a big thing.
Jen dropped him off, and the discussion of food began. Something that he is obsessed with.
Food.
Soon, he'd "mention" to me about his "plans" to head to San Diego with his buddy to do some photography.
Leaving Monday after appointments...and on and on he went.
I stayed quiet.
He shared more.
I stayed quiet.
Monday morning we'd begin our normal routine. He'd start in again about his trip.
I would deny approval. Soon, sharing how I really felt.
He'd argue back.
Final decision would be "let's ask your doctor"-
As we made our path up to City Of Hope, he went on and on about how good he felt.
I could see it in his face. Most certainly, could see it in his appetite, and demeanor.
Something you can't describe unless you've taken this journey. Their demeanor. It speaks volumes.
He weighed 120 lbs a month ago. Walking with assistance 1 month ago. So weak!
First stop, labs.
Second stop, doc.
She was waiting for us. She's always so kind and loving when she sees him.
Hugs, and warm loving greetings to us both.
Her first words are "you look so good Kristopher"-
He always seems a tad bit nervous. To me, he does.
I guess you just know your kid.
Not to mention, I told him he'd have to get her permission for any day trips.
Any trips, for that matter.
He'd agree.
He began to ask her about San Diego. Photographing with some friends. On a boat.
In the ocean. Not close to home.
I sat and listened. Making sure however he planned to ice it, would be re-iced with my icing.
The nag.
She agreed, but only if he stayed out of the sun.
The boat. The ocean. The sun.
She went on and on about how he needs to get on with his life. How getting out and living a normal life is what he needs.
I began to ask what the whole 100 days thing means.
Why is there so much pressure on us for protection during these days...etc.
Her reply was it's most vital for meds and rejection. Watching his liver. Heart. Lungs, gut and eyes.
That he's at the level now, that is still delicate. A very new immune system. Like a newborn baby.
Newborns don't eat uncooked food, and we certainly don't expose them to things that would compromise them.
But....she said, he needs to get back into the rhythm of life. To learn to get through the next hundreds of hundreds of days.
Just to keep an eye on his "body's fuel system"-
Most important, to be aware.
We went over his counts, his amazing new weight gain. His med sheet, which still continues to blow me away. Discontinuing two, adding two. One being, fish oil. The fat that is created due to anti-rejection meds causing concern. And to me, keeping natural fish oil in the game, is most welcome.
A cute part of the story, is his doctor followed my suggestion of starting his oral chemo at 50mg. versus the 100mg. That switch will hopefully allow his tastebuds to gradually do their thing. We all know what will happen.
She asked how my weekend away was...and just how proud she is of Kris. She almost pinches his cheeks.
There's a glow in the room. Doctors know this fight. Not quite a victory. But the fight.
It's almost as though they are the coach in the boxing ring. Wiping the cheeks. Pumping them up.
Encouraging, and pushing. At this point, encouraging to get out and on with life.
Then there's Mom.
This road has been the hardest thing I've ever done. I am still scared. I wish I could say I don't think bad things will happen. I wish I could say he's healed and cured. I wish I could protect him from viruses, and most important infection. I wish I could hover over him and make the bad things stay away.
Truth is....I can't.
I can just pray that he stays safe. That his doctors give boundaries that allow him to stay healthy.
And that I don't have to walk into the pharmacy with yet another prescription.
Only this one being- Zyprexa for depression.
Let's just do this organically. And live life to the fullest. While he can.
Day 90.
First text. 7:30am
First text. 7:30am
San Diego. With friends. Taking pictures of what he does best. Fishing poles, and fishing friends.
My reply to him- "I love you so much honey"
Stay smart.
Counts---------
WBC 13.2
RBC 3.25
Platelets 131
Here's a peek at what I look at every week, twice a week. Changing every Monday and Thursday-
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| Highlights in green, are what he takes daily. Twice daily. |
I wish you all a sweet day.
And I thank you for the love and support.....
Your friendship, love and support is what keeps my heart from breaking into a million pieces....
To my family, I thank you.
To my family, I thank you.
And Kyoko, thank you. For this today. Thank you.
Happy Tuesday!
This Mama Lisa
The day before diagnosis-
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| Flu like symptoms. August 19th-2015 |
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| Oh Lord .....have mercy on my baby....August 20th, 2015 |
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| Mama and Bird on day of discharge, post transplant. February 4th 2016 |
super stiff drink(s). FOX'S ON THE COLORADO RIVER- PARKER ARIZONA
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