Fighting

Every moment is a fight.

A fight in the epic battle inside of Sam's body.

A fight in our epic battle to hold ourselves, our children, our family together.

A fight in our epic battle to maintain control…of whatever we can control.

Platelets and a few other tune-up meds - just a visit, not an overnight stay

It was a conversation about horrible things. Do not resuscitate orders and end of life care.

We're going to be traveling out of the state. 

"I can't be in control at another hospital," the doctor explained to me. He can talk and explain, he can use his connections and his stature to convince an out-of-town doctor of our wishes. But he doesn't have control there.

I replayed the conversation later in my mind and I found myself laughing somewhat uncontrollably.

Control.

As if any of us have it.

Are we keeping the leukemia from growing out of control? 

At the moment, yes. We are keeping it quiet. It is unchanged from a few days ago…so we think. So what can we control: How do the medicines make Sam feel? What is the minimal dose we can give him to keep him comfortable, happy, and also awake and content? Which poison will hurt only the leukemia and keep his other stuff working just right? When will it rear its ugly head and run us over? 

It's like a boxing match -- what's the famous phrase? Float like a butterfly and sting like a bee….

A few jabs over here from a chemo pill.

The body sends back a nap and a vomit.

A few jabs over there from a steroid.

The body sends back a rash and a pain.

It's a different game. The rules have changed. The goals have changed.

We don't talk about long-term effects of medicines. 

We talk about today, about tomorrow, about planning for a few minutes at the House of Mouse.

There is no long-term.

And yet….we're not done.

It's not over.

We don't plan for death, we don't welcome it. 

We don't talk about it each and every moment.

But I catch my breath when I see him playing charades with his sibs and cousins and wonder when it will happen again.

I suppress my pain when he tells me to "leave me alone." Oh, Sam...

I drop everything when he asks me to sit with him and read. Until I'm hoarse if he wants.

And yet…we're not done.

We still ask him to say please and thank you. 

We aren't done parenting him yet.

We aren't done trying to find the magic, the wonder, the light.

"I am not going to be happy any more," he told me. 

"It's okay to have fun," I told him. "Even if you're sad inside, it's okay to also have fun and smile and be….even if you're super sad and angry and upset on the inside. You're allowed."

Fireworks lit up the sky last night. Sam was physically uncomfortable and feeling fragile, even though he was only surrounded by his inner circle. But the lights lit up the sky and he watched…transfixed. For a few moments transported away. And for the rest of us? They lit up our souls. I will never see fireworks again without thinking of this night, when our community came together to illuminate the love for a little boy and his family…thank you. 

Fireworks….on the fourth of July they remind us of the "rockets' red glare" that helped forge our nation, of the epic battles that were fought for freedom.

Fireworks…now they will forever remind me of the spark that is our Sam...

Watching fireworks…Chanukah candles burning behind him

Not a day goes by that we don't hear about another treatment.

Another drug.

Another place with an incredible story.

Believe us when we say that we have left no stone unturned. We have tried them all.

We fight now for comfort and time.

We fight for more of this...