Peace & Love: Moving Forward

On New Years Eve I told Bill that the first few weeks of January were in fact going to be quite challenging for me. Only because I tend to get myself worked up on things I have no real facts on. I tend to fall victim of anxiety at 3am, when the world is sleeping and it feels as though my prayers will never fully be answered. Or I often find myself questioning whether prayer even works.

Interesting fact about me, I never stress over money. Over material.

Ever.

It's always over my birdies.

Or those I love.

Health.

Safety.

Choices.

Circumstances.

Never material.

Yesterday, (Bill's birthday) was also Kris' appointment in Hollywood. A 9:00am appointment deep down in the heart of the LA concrete jungle on the stormiest day of this year. I actually laughed when calling him early reminding him to do labs.

Both contemplating our choice of direction. What freeway would offer us a better route. What lab would make most sense...

As I was driving to pick him up, I found myself completely disregarding all choices as any inconvenience to me, because just being by his side, even for the 2 hours it took us (taking streets all the way to Hollywood)..mattered the most to me.

His mom.

The woman that will fight for his body and mind.

Mostly on her hunt for answers. He has not felt good for the latter part of 2017.

Losing too much weight during the holidays. A body so weak and unable to move around.

She was searching for answers.

Yesterday Kris was 726 days post transplant.

In the big picture, its a big fucking deal. Almost two years.

Arriving almost 30 minutes late, we'd feel the rudeness from our sassy nurse even after calling them right at 9, letting them know the 5 fwy was closed. I'd disregard her nature and demeanor as just ignorance. Losing my sweet canning ways a long time ago. I'm not there to butter her, or offer many more thanks. After all, it is not her feeling the feelings, and pure torment we've walked through. So my tone shifted a little. My demeanor of kindness is more firmness.

Give me vitals. Weigh him. Move along Karen, move along. Buh byeee...

My son can hardly walk.

His joints so stiff it will make a 90 year old man look like an athlete.

We discovered he has Scleroderma. A hardening of the skin and most troublesome of the joints.

It's the reason he can't bend his wrists, and bend down in a crouched position. He has a patch of visual hardened skin on his back. All of this due to transplant and GVHD.

I'd request Physical Therapy and Occupational Therapy immediately.

The hugs to our doctors and nurses have stopped. Not because our kindness has ended. But mostly because this flu floating around is no joke. And the seriousness of what we want, and how we want it is most important.

Leaving the building together in hopes to find more answers and build a new healing bridge.

Labs today showed that at 2 years he's mostly headed in the right direction.

I opened the labs today with sweaty underarms, per usual. Texting him the results.

Doing more research on the new med Jakafi he'll start next week. The cost is 30K per month for those uninsured. $800.00 a month for those like us with insurance. Let that sink in a second kids.

Pretty delicious, huh.

She also increased his chemo pill. Something she believes will slow down the scleroderma.

I made a phone call today that I've waited 2 years to do.

My first idea last year was to make the trip to Germany as a family to meet our donor (if he's still willing)-

Today, I'll make the family decision to have him come here (if he's willing)-

Kris does not belong on any planes. Any sort of public place right now is just spewing germs and bugs.

To hug the donor, or to even see him is my life long dream.

Two years this Saturday you guys.

Two years of this new chance to keep pushing through. Like a snow plow on the biggest snow filled street. I will push with him. For him. For Jen. For all of us.

Happy Almost Two Years To My Son.