100 Days

Yesterday was +100. One hundred days post-transplant. 

It was the last day of Chanukah. At some point I wrote all the + days on our calendar and I knew that today, day +100, would fall on the last day of the holiday. I thought it was a good sign. 

One hundred days is a transplant milestone. Today it doesn't feel like one. It seems like a lifetime ago that we started with such hope, such readiness for a future with new life inside our son. We knew that it could be rocky. We knew that the conditions for transplant weren't "ideal." We knew what could happen. 

But I don't think we believed it. 

And now, 100 days...it's not the celebration that I imagined. There's no 100 Day candles or cake or donuts or ...whatever one does to celebrate a milestone like this. 

But there's still this:

And for now that's what we have. 

Wishes

If you will recall, we spent a magical 36 hours in the Magic Kingdom in August. It was right before the transplant. Sam was feeling really really good. Our spirits were high. 

There was a very quiet cloud over that trip. We didn't speak about the dangers of the transplant to the kids. We didn't voice our deep worry -- would this be our last trip together?

Well...it wasn't our last trip. But it was the last one like that. 

When Sam asked to go back to Disney, I know that what he was really asking for was a rewind back to that August day when he felt so well, so strong, so full of hope. 

There's magic here for sure. 

But not the kind that can turn back clocks. And so this trip is so very different and so very difficult. 

Sam is weak and uncomfortable. He's so thin I can see every bone -- even sitting in a wheelchair becomes uncomfortable after a little while. His intensely high expectations are often not met and he has developed some odd fixations that are exacerbated by his emotional state. He wants things to be perfect-- and of course they are not. It's so difficult to manage the expectations of a "normal" 8 year old...how to manage them now? We are constantly stymied and saddened. 

However, there are bright spots and we cherish them (and photograph for posterity of course!) as they come...

Hogwarts Express...

Choosing a wand....he chose You-Know-Who's wand so he's making an evil face:

Catching a lizard - these guys are everywhere!

Winning an arcade game!

Touching a shark!

A glimmer of Sam-ness came through when he wanted to do crayon rubbings of the hotel lobby floor (we had seen others doing this, and it seems like a thing here). Our friend Jason sat down next to him and met the real Sam...for just a few moments. Because he's truly not himself. He doesn't talk a lot, and he doesn't share much of how he's feeling. He doesn't want to meet new people or even talk much with the ones he knows and loves. But every so often we see his light shine through. 

And so we continue on, seeking the light, finding the fleeting moments of joy. 

(Lighting candles on the balcony of our room)

--

There are some incredible things going on right now in Sam's honor. I'm writing from my phone so I can't get all the links together for you but there are some amazing fundraising efforts going on to help in the fight against childhood cancer.  Links available on my Facebook page (which I think is public enough or you can just friend me). All I can say is "wow" and "thanks" -- two of my favorite prayer words. When I return home I will find the words to properly thank the Make A Wish organization, our Wish Granters, and everyone who helped to make this trip possible. Until then -- again, I will just say "wow" and "thanks." 💜

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...

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.