The Shower Curtain

The other day, Sam and I were driving in a car with my mom and dad. They mentioned that they were planning to go to a particular store, and I said, "oh! I need a new shower curtain! Can you pick one up for me?"

Then we discussed what kind I wanted. I like the plain, clear ones. Makes the bathroom look bigger.

Sam piped up: "why do we always have a clear shower curtain?"

I explained why I liked it (seriously? why does an 8 year old care about the shower curtain?) and he said, "well, I think we should get one with flowers on it." (It might have been the World's Longest Conversation Ever About Shower Curtains)

Really? Flowers?

"Really, mom. Flowers."

So guess what we got?
Yep, a flowered shower curtain. Our first one ever.

So why is this remarkable? Why am I writing about this incredibly mundane purchase?

I put it up last night. I took a shower this morning. It is different, it is unusual.

It makes me think of Sam.
It makes me think of what it's going to be like when he's not here.

I know that I'm trying desperately to live in the now, in the moment, in the I-have-him-and-I-should-focus-on-that.

But it's hard, oh-so-hard, not to imagine what it's going to be like.

Every time I look at the shower curtain.

We Have Plans

It's hard to know what to expect.
Sam is feeling okay. A little tired, happy to sit at home and watch movies or television.
A trip to the arcade.
Back to the go-karting place.

The labs don't say "okay."
Elevated white count.
Considerable peripheral leukemic blasts.
Low platelets.

So we tanked him up with platelets.
Added a new drug to the cocktail.

He has plans:
Roller coasters.
Swimming.
Trampolines.

Sam shared his plans with Dr. M, who is going to help us keep him moving forward with them.

Our goal is to take care of him.
Our goal is to keep him comfortable.
We're looking for a quality of life that allows him to look ahead, that allows him to make plans.

It's not perfect.
It's so very far from perfect.
It's, in fact, the farthest farthest farthest point away from perfect I could ever imagine.

But it's what we have.
Making each day count.

We have plans.

From Tante's Perspective

From Phyllis: We've always believed that the more people who are around to love our kids, the better. "Tante" (Auntie) Anne wrote these reflections after our trip to Israel together. Some of the funnier grown-up moments came when we tried to explain to El Al and Israeli security how we were all connected to each other….

by Anne Persin

"Do you know what's happening?" Sam asked me the day he found out.
"You are very sick." I answered.
"I'm not sick. I'm going to die."

How do we support an 8 year old who is dying without a. pretending everything is fine - just stay on the sunny side! or b. giving in to the depression that is trying desperately to pull us all in? We have all been walking this line - at different times favoring one side or the other - hoping that experiences, the making of memories, could help us all through. Sometimes it works better than other times.

12 of us just spent a week together in Israel. Sammy had said over and over again how much he wanted to go.
He was told: the flight is going to be crazy long. He still wanted to go.
He was told: it's going to be very tiring. He still wanted to go.
He was told: the food is going to be really different. He still wanted to go.
So we went. Then, halfway through flying there, Sammy got a rash. A really bad rash all over his body. He was overheated. He was uncomfortable. He was miserable. It took sooooo long to get there. Everything was sooooo exhausting. And the food - blech. This dream trip to offer Sammy the chance to experience one of the few things that he really wanted to do before he dies was looking like a horrible failure.

[Before I continue, I must say, thank you, thank you, thank you to our guide, Uri Feinberg. His warmth and patience, flexibility and care made our trip 1000 times more wonderful then it ever would have been without him.]

Wednesday was a little bit better. We went to the Biblical Zoo in Jerusalem and fed the elephants and the giraffes and the zebras - it was awesome and Sammy got into it but it was just for a moment, it seemed. In the afternoon he was back to being tired, angry, and miserable.Thursday, on our way out of Jerusalem, we went to the Jerusalem Bird Observatory; and little bits of the silly Sammy that we all know and love started to peek through. He walked a little bit more instead of relying on his wheelchair. He talked a little bit more instead of disconnecting to the people around him. He let birds fly, looked for frogs, pointed out turtles.

But it was Friday - our last day in Israel - when he finally started to open up to being there, in Israel, with us. He ate. He went to the beach. He talked to us - not about how miserable he felt but about memories and fishing bait and airplanes. He gave opinions about nicknames and pipe cleaner creations and sand. It wasn't a perfect day, by far, but it was a day where he didn't spend the majority of his energy angry with God and the world around him.

You see, we all walk the line between pretending everything is fine and swimming in the abyss - even Sam. Lately, a lot of his days have been pretty dark, with good reason. That last day in Israel, I could see a balance in him. He was ever aware of his reality: he is going to die. But on that day, he also took some time to live.

Throughout the trip, adults were constantly asking Sam, "what can I do for you?"
"Can I do anything for you?"
"Can I amuse you in some way?"
"Can I wheel you closer to get a better view?"
"Can I buy you something? Hold something for you? Get you something to eat? To drink?"

In the airport, on the way home, I must have asked him a dozen of these kind of questions when:

"I know something you can do for me... You can give me your life."

"Sam, if I could, I would in a heartbeat."

I had to turn away before I started to cry.

Three grandparents, two uncles, one tante, two parents and four children make a trip to Israel…(pictured here with Speedy the helicopter pilot)

Family On A Journey

What was our goal for taking Sam to Israel?

Let me rephrase that sentence.

What was our goal for taking our whole family to Israel?

To create memories together, as a family, in a place that we (the parents) love. To deeply embed in our children (all of them) a collective remembrance on the subconscious level. To add to the canon of our family's story with tales that can be told and retold until their memory becomes softened around the edges and sweetened with the flavor of memory.

I do believe that we did that.

Sam was a lot like a homesick camper who can't quite get comfortable. That camper who has fun during swimming or sports but immediately tells you how miserable he is afterwards. That camper who, if caught smiling or laughing, might send you a scowl just to remind you that he plans to continue to be homesick even if he's having fun sometimes. And in retrospect, this is so typically Sam. (Please remember, he really and truly did not feel well for most of this trip. The not-quite-sure-if-it-was-chemo-or-GVH rash was uncomfortable and itchy for most of the trip. The pain in his ankle that only started to go away by Thursday kept him from walking too much. And wow, were those changes fast.)

We scrapped most of the schedule and replaced it with "go-with-the-flow" moments that filled us up with Israel and Sam-ness.

Buying the biggest shofar he could find

Feeding elephants at the Biblical Zoo

Releasing birds at the Jerusalem Bird Observatory

Fishing in Jaffa Port (one of my favorite moments because this kind Israeli man just let Sam use his fishing pole)

Helicoper ride over the coast of Israel….in full disclosure -- I (Mom) kept my feet on the earth.

Playing on the shores of the Mediterranean Sea (try teaching Solly to say that)

My children will carry this memory of their very first time in Israel deep in their souls. They will always hold this as a place that they experienced together as a foursome. When they visit again, when they study there, when we talk about Israel at home -- they will feel the presence of our whole family. This is the accomplishment of our goal.

It was hard, oh so hard, but I do believe that we made the right choice to take this journey in the midst of our bigger one.

We have so many people to thank for this journey, and it's hard to write everyone down -- so if I forgot to include you, please know it is from my own error (and probably jet lag) and not because we are unappreciative of what you have done for us! 

Our intense and full gratitude...
To Rabbi Steven Lowenstein and the entire community of Am Shalom who made it possible for this trip to happen.
To Uri Feinberg and the entire staff of Da'at who went above and beyond to give our family this experience. (And to Meryl for the challah!)
To the hotel staffs at the David Citadel and the Carlton hotels who delivered milk at all hours of the day and high-fived Solly at breakfast each morning.
To Jessica at USAirways, who rebooked us on Sunday from our original tickets to the different-airline's flights that got us all the way to Israel (it was quite an ordeal for her and for us but without her, we might not have made it at all).
To everyone in the US and Israel who sent us messages with ideas and suggestions for improving and adding onto the trip, or had fruit or sweets (who knew that Marzipan Bakery's rugelach could be delivered!?) sent to us, or left us kind and lovely offers of their own resources and even their own homes.
To Dr. M and his team who spent a lot of time texting and talking about ways to make Sam more comfortable from so far away and checked in on us at all hours of the day and night.
To our dear friends at home who took care of our house and turtle.
To Uncle Josh and Uncle Harry and Tante Anne who helped shepherd our children and share our pain and love.
To Bubbie and Zeyde and Grandma who trooped along with us and held back their tears as best they could.
To all of you who followed our journey and continue to follow what we do…

Thank you.

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?