520 Days Later

"Time is all we have. You may find one day that you have less than you think."  ~ Randy Pausch

We are so desperately heartbroken and filled with sadness.

Sam has relapsed.

His ninja leukemia is so very strong.
It has reared its head in his bone marrow and in some extramedullary spots on his jaw and head.

There is no cure.
There is no treatment.

Sam was scheduled for a routine bone marrow biopsy on Tuesday at 12:30pm.
Coincidentally (?) his labs that morning showed 1% blasts.
"We need to check his marrow," said the doctor.
"Hey, we're free today," I said. "How about 12:30pm?"

Biopsy completed.
A visit to the hospital dentist to determine why there was pain in his mouth.
A swollen spot in his gums.
"Leukemic infiltrate," the young dentist casually called it.
I madly googled that phrase while he was having another x-ray.
And then I texted Dr. M: "I'm guessing 'leukemic infiltrate' is not a good phrase to hear."
He was over at the dentist's office in a flash.

It's not good.
It's not good.
It's very very very bad.

I type this in the middle of the night.
I can't sleep.
I can't think about anything except what life will be like without our Sammy.

We have some options available to us that may or may not slow down the rate of leukemia.
The doctors don't know.
They are sad too. Terribly, horribly sad.

There is no cure.
There is nothing they can do to cure our boy.

520 days ago we were told "your son has cancer." 
I never thought I could feel more pain than that day. 
I was wrong.

He still feels well. We don't know how long that will last.
We're going to "suck the marrow out of life" as long as we can. Quite literally and figuratively.
Capitalize on his good days.
Fill them with joy and blessing and delight.
Stick his feet in the ocean and his head in the clouds.
Fill his days with wonder and love.

We have to tell Sam. Although we think he knows….he is wise.
We have to tell David and Yael.
These are the tasks that consume us today.
How do we deliver such darkness into their shiny happy world?
Love. We just remind them how much we love them. Over and over.

We might not answer your calls, your texts, your emails, your messages.
But thank you for them. They lift us up and hold us steady. Your presence means so much to us, even when we cannot even begin to acknowledge it. We feel our world holding us in a big heartfelt hug.

We might not update this blog. I don't know. Then again, we might update it all the time because it helps us to write and reflect and record and remember. There's no playbook and there's no manual. The world is bright and harsh-feeling, and we are all so very fragile. We can't answer your questions any better than we can answer them for Sam and Yael and David (and Solly, but luckily his questions are more like "why can't I have donuts every day for breakfast?") or even for ourselves.

Your support along this journey has been one of its most incredible blessings. We couldn't have made it this far without you. We will desperately need you as we go forward. From now on, Sam will lead us, he will tell us what he wants and we will try so hard to give it to him. From now on, we will hold on tightly to each moment, we will celebrate and we will play and we will laugh and we will create a lifetime's worth of memories and moments in the time that we have left.

We have no other choice.