Peace & Love: Pray More, Worry Less?

Our newest scheduled program ran a little something like this--(This week)

Monday, he drove himself. Labs. Docs. Home.

Tues, and Wed were normal days, with Wednesday being a tad hard. On his gut. And on his body. His soul feels tainted, and again....just a tad down from the long path he's had to walk on.

Never easy. Doing it. But not easy. Manhood squirted with poison. Knocking him down.

But he moves on. Snapping pictures. Hanging with the dogs. Enjoying the great outdoors as his doctor told him he could. Living, but just precautionary zones and keeping smart. It's never an easy task for a wild earth child. But he is.

Yesterday we jumped in the car headed to City Of Hope. Together.

First to labs at 10am-Where you rush to sit. And sit some more.

Remembering how thankful we are to be alive. And able. Most importantly, waiting for those wonderful people behind the scenes to process blood. Lots of blood, for lots of people. Fighting the fight. You sit in 3 different waiting rooms staring next to, or across from bald people most always covered with beanies, turbans, or wigs. I always seem to find smiles. It's like that place just hold so much hope. No one wanting to toss the towel in. Even if they're sitting next to you on oxygen and in a wheel chair. They're there for labs. And they're there to fight. HARD.

We'd be told after labs to make our way to the second floor. 2A to be exact. Causing a little alarm worry red light to go off on Kris' soul. I could feel it, and I could most definitely see it. But I just keep chatting away, or we continue to look at various things on Instagram. Usually animals, food and photography. Those three things that tickle his fancy. Photography coming in a hot first place.

2nd Floor causing no alarm. First floor had some leakage because of rain.

No problemo here kids...

First Stop. Labs

And you know, it's only appropriate that I sit outside...because helllloo. n.e.e.d.l.e.s. -----> shocker.

We'd then make our way up to le' second floor.

Where he becomes anxiously busy- on his phone----

And so....I read. We both keep our minds busy...

Pausing from phones to chat about stuff. Cracking each other up over pictures or things we see.

One of the things I've always enjoyed about my kiddo's is the sharing of life. Things we like, and little simple tokens of love that we all share. It all has a new meaning now.

Soon, they'd call Kristopher....

Sitting in a room, waiting. Room 3. Waiting for Dr. Farol.

He comes in, smiling with his cheerful demeanor. Asking of course..."how's it going Kris"

Any changes?

He'd share the findings of a virus what we are aware of. Only concern being, it raised. Last weeks blood work was in the 500 range. Jumping to 900. He'd pull the remainder of steroids down to 0- which also includes one that he takes with that steroid. And so eliminating 1, adding Sirolimus (anti-rejection med)

Allowing his body to work for him. Come on white cells, take it down baby, take it down....

We then got to view the results from his biopsy last week. Showing no signs of leukemia.

Here's the thing with these. It's exciting to see.

It's a relief to know that no traces are present.

It is.

What it doesn't mean is that we will forever be clear.

We will always watch.

We will always be aware.

We will always search for more answers.

Within a hundred days, we pray each day, each hour that his body doesn't reject this chance.

So, with 4 pages of paper. These two being most important.

Along with weekly doctor visits, and keeping him safe from viruses, and rejection.

His engraftment should read 99.9 at around the 100th day marker. During the first days post-transplant if you remember him getting that gnarly rash, we were told it was engraftment. When in reality it's a bodies way of trying to reject the new cells. And so, rash is our first concern.

Kris has a mindful of questions. Each week. And I love it. We sat with Dr. Farol for a good hour. Me asking if he has children. He does. Twins. One boy and one girl. Kris asking if they think he's sterile. Getting the answer he didn't want to hear, but hears. He has a 1-2% chance of not being sterile. I rub my arm across his back assuring him, we have babies in the cyro bank. Not really wanting to say that, but we need to keep positive. Again, that slap of man-hood in the cheek.

Us asking Dr. Farol his thoughts, soon to hear his answer was he has twins because of infertility issues. And so you begin to understand, that even without treatment, people walk paths a different way. It's life.

His wife is a radiology oncologist. And so....their life discussions at home surely turn to cancer way more than we can fathom. He went on to explain how years ago he couldn't be persuaded that half-match siblings or parents were better than cord blood. Where now he is opposite. That now he believes with the changes (science) and medicines it is infact better. He shared a couple of examples. One being a patient on the 6th floor with a half match from their parent. Treating them with a certain chemo to kill the old ones, allowing new ones. And on and on he went. Sharing goodness. Science. Life. Love. With us.

Both sitting there absorbing in massive fashion.

I began to go over my med sheet. Which is called our "Summary Sheet"-

Asking to take some off, and adding others. He will be on an oral chemo for lifetime, so I'd have to ask which one, or to get the wheels turning.

One, for financial purposes. The other, so they can work with science. Latest and greatest.

I'm a squeeky wheeled mama. He's so awesome. Understanding my notes. And reasons behind them.

Waiting patiently as we stare at him, in a silent room to say ....."Anything else guys"-

Kris...oh I wanted to know what other areas of rejection do you see in transplant patients. Aside from rash, and skin.

Gut. Eyes. Liver. And lungs.

The two majors, are gut (where it eats the lining of your insides so no absorption can happen causing chronic diarrea) -(eyes are severe drying) and of course liver and lungs....just major issues.

His explanations are never ever rushed.

Kris is a sponge. He always has been. He's VERY intelligent. He soaks stuff up and retains it better than I ever could. And for that I always will be grateful.

He's no dummy. And he's aware. It's up to him to react with and to it.

Kris just mentioning again about "boating"- And being out and about. Dr. Farol encouraging to get strong. But be aware. He can boat, but he must be vigilant about sunshine. SUN. Sun......is the enemy. So much so, Kris will wear beanies, hats, long shirts, gloves and SPF. It's the new life. But it's worth living for.

He also asked if we sent our THANK YOU card to our donor. "Oh yes!" yes, we did.

Kris is extremely detailed with his port. One that I'm proud of. If he doesn't like a port change or clean, he tells em. Mondays wrap wasn't what felt right.

Please change it.

And so.....

As we left, it was almost 1:45- I was starving! But remembered he wanted to stop by the Koi pond. It's been closed every time I've walked by. It is BEAUTIFUL you guys....simply beautiful....

He has his camera. He has a new flash. And lens. And so....

In his element of what makes his soul blossom. The simple things in life for him. Fish. Camera. Trees. Water.

I was looking at his little spiny back. Him crouched down snapping away. The sun on my cheeks, and son in my view. I kept thinking of how lucky I am to be with him. He's alive. He's intelligent. He's fighting for a new healthy life. He has goals, and with goals come fear. But we have eachother.

He has an amazing girlfriend. And an army of friends and family behind him. This past six months have taught us alot. Knowing that any given minute it can change again. And so I try and remind him to live for today.

To keep kind. And love hard.

That I will never ever back down to help find a cure.

He will grow that beautiful hair back. He will be strong. And help others someday.

September 2015

Soon, he'd say "Mama, stand right there I wanna get your picture"

One thing you should know about me, is I try not to sweat aging. I try not to get caught up in the vanity of it.

I try to enjoy aging.

But....lately- my pictures are awful! Kali posted one of me last weekend and wowza doodle. I begged her to take it down. Her reply "Mom, stop"-

It was everything in my soul to stand back and smile for him.

Reminding myself that I am here for a short time on this Earth. And if he gets a shot of me here in a place that holds so much hope for us....well then good.

And so I stood back.

And smiled.

Looking at him with his pants falling down, his little shaky hands snapping away at me, thinking the whole time...Oh my God, thank you for letting this day happen.

Thank you God.