Reality Check

You know how you've heard about a place for your whole life...and you imagine how it's going to be...and you have expectations of what you're going to get...

And then it isn't quite that?

So that's what happened to Sammy. 

Israel. 

His whole life he's heard about it. 

Imagined our family trip. 

Was told that he would study there someday. 

When we told him that his leukemia had returned, one of the first things he said was, "I will never go to Israel."

So we made it happen. 

Israel. 

I was very honest with him. 

It won't be like home. 

The food will be different. 

Things might smell funny.

It's a long plane ride. 

Yes, he said. I want to go. 

Each day I would repeat this refrain. 

Each day he said, yes. I want to go. 

I offered to cancel. He didn't feel well. Even on the day of departure. No, he said. I want to go. 

On the plane ride to Israel, he was uncomfortable. It was hot. He developed a rash. But then we got off the plane and he smiled. 

Israel. 

But things weren't quite as he imagined. And he started to feel worse and worse. The rash got worse. He was itchy. He was tired. Things weren't like home. 

I reminded him that I had warned him. 

He didn't care. 

Jet lag has been hard. 

We've tried to make the best of it, feeding him the peanut butter and Oreo cookies we brought. But the food isn't what he had in mind. 

He's tired and uncomfortable. 

Things aren't what he imagined they would be. 

Late last night (or early this morning, I guess), I had a powwow with Dr M and our palliative care nurse to figure out how to salvage this experience for him and help him feel better. We changed the meds. We talked strategy. 

Operation Salvage and Distract was enacted today. We changed the itinerary and added the Jerusalem Zoo. Sam loved it. 

We fed the elephants and the giraffes. We met the zebras and the rhinos. 

He was tired but enjoyed it. 

But it all came crashing back down when it was too cold to swim. (The pool is heated but the air was cold.) Disappointed doesn't even begin to describe it. 

Up and down. 

His mood, his sense of well-being. 

How do you live with the knowledge that you're going to die from the disease in your body? How do you enjoy these moments when you just feel like it's not what you expected?

He's only 8 years old. I couldn't expect him to want the same things two days in a row if he were a healthy child. But this has amplified and exacerbated all the negatives.  

I hate God, he says to me. 

I hate everything. 

There is no manual. There is nothing to tell us what to say to him in these moments of terrible emotional pain. 

Even in Israel. 

We want magic. 

We want big beautiful grand moments. 

But it doesn't always work out the way we hope. 

We have a couple more days in Israel. 

Hopefully in each day we will be able to find a blessing...

Nothing is Easy

I called AT&T to do whatever I needed to get my iPhone to let me talk to Dr M from Israel.
(Oh yes, we are headed to Israel. Have I mentioned that?)
I reached Brian, a cheerful man with a lovely Southern accent.

"Where y'all goin'?" he asked me.

"Israel," I answered, thinking the answer might have something to do with the long distance stuff.

"Well that's an interesting destination! Business or pleasure?" he asked, conversationally.

Is it pleasure? Is this a trip of pleasant delights? What do you call it when you are taking your dying child on a trip-of-a-brief-lifetime?

"Pleasure," I answered. It was just easier. 

But sweet, clueless, cheerful Brian wasn't done.
Clearly he had some time to kill while he pulled up my account.

"What made you choose that?" he asked.

My sweet dying son cried out in anguish that he would never go to Israel. That's why we picked it. 

"Well, my husband and I met there so our kids have always heard a lot about it," I answered slowly, breathing shallowly and choosing my words carefully, holding back the tears.

"So romantic!" he said.

Will I ever be able to revisit my beloved Israel, place of so many good and sweet memories, without the pain of this trip? Will the good memories that we are determined to create win out? What will they remember of this beautiful holy place? Will they remember Sam's pain or will they remember how the sunlight glints on the Jerusalem stone? Will they remember the bittersweet taste of his moment or will they remember the sweetness of Marzipan rugelach and pop-rock chocolate and Milky cups? 

"Yes," I said. "Yes, it is."

Every interaction, every conversation, I weigh out what to share and what to talk about and how to say it and how to take it and how to breathe....

#samsbucketlist update

Learn to drive:

Other things are in the works. Your generosity astounds me and leaves me filled with tears of blessing. The outpouring of love and care is truly amazing and we are so touched. 

Sam is anxious and angry, he is emotional and cries easily. He's in some pain and I'm worrying over a spot on his ankle that's particularly bothering him. He's very excited for the trip and when he gets emotionally overwrought I can bring him around by talking about what we will see and do in Eretz Yisrael. It always gets a smile. The other kids are excited to go. Solly wanted to get on a plane tonight and didn't want to go to bed.

I suppose I should go and pack....

Tears

I don't want to die!

I want to grow up and marry someone!
I want to learn to drive!
I want to have a Bar Mitzvah!
I want to see David be President!
I want to see Dad get old and wear diapers!

How will you live without me?
How will David and Yael and Solly live without me?
How will I live without you?

What will I do without you? 

Where will I be? 
Solly won't remember me.
I guess that makes him lucky, Mom.

Will you have another baby to take my place?
What will happen?
Will it hurt?
What if I die tonight?
Will I have to go back to the hospital?

You're going to put me in a box and put me in the ground.
I'll never get to do all the things I want to do.

Who is going to do my funeral?
I want it to have fireworks and party games. That's what I want my funeral to be.

Why did I have to get cancer when I was just a kid before I got to do things?

How do you tell your child that he's going to die?
My heart is broken into a million billion pieces.

I want to do something amazing.

Oh, Sammy. You already have.

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.

Little Things - BMT +73

This morning, I sent this message to Dr. M:
"Today is Sam's birthday. Can I ever thank you enough for today? I don't know. But thank you for today."

And I sent him this picture:

Yep.
Just a little morning with donuts at the Sommer house.
Just a little birthday.
Just a little thing.

So little I can barely breathe.

"The little things? The little moments? They aren't little." - Jon Kabat-Zinn

Eight is great.
May there be so many more….
Blessed are You, our God, who has enabled us to reach today.

In honor of Sam's birthday, we have created this project. Help us out?

Here - BMT +65

We are here now.
In this place between normal and not-normal.
It's a little strange, really.
Things are far from "normal" for Sam.
But they are mostly "normal" for everyone else.
Which is even stranger for Sam…to know that stuff is swirling all around him.
Sometimes he is too tired to notice -- he is just content to rest on the couch.
But sometimes he notices -- and he is sad, mad, angry, jealous, frustrated.
The switch from central line to PICC is supremely frustrating to him. He hates having the line in his arm.
The constant IV-fluid backpack is irritating to him.
Don't tell anyone, but I let him go trick-or-treating without it. (But it was nearly-pouring rain so there aren't any pictures.)
I think we're all weary.
A year ago Saturday was the day that Sam came home from the hospital for what we believed was the last time. A year ago Saturday we celebrated the end of Sam's treatment.
And here we are, a year later.
He is good. He is really good.
It's just not the same euphoric feeling we had last year, as we started the month of November.
I think we're always waiting for the other shoe to drop.
We are here now.
In this place between normal and not-normal.

Well - BMT +60

In honor of day +60, we carved pumpkins.

Okay, in all fairness, Sam has been bugging at me for weeks to carve a pumpkin.

His platelets are pretty good.
So I felt safe putting a (small and relatively dull) knife in his hand.

It's never far from our minds, as evidenced by his t-shirt.
But we live each day....

He feels pretty well.

Today he told me that his leg hurt. "But not like cancer, mom. Just like I pulled a muscle."

I'm not sure what to think about the fact that my son knows how cancer feels....

And yet, still, I focus: today was a very good day.