Full Circle Piano Recital

On May 20th, we had our Spring Piano Recital.

That morning, Sam told me that he had some pains in his legs.

"Do you need to stay home from the piano recital?" I asked.

"No," he said.

He played Old McDonald. He rocked.

Three doctors' visits, 5 blood draws, 2 x-rays, 2 MRIs, one ER visit, one hospital admission, one bone marrow biopsy....just 23 days later, Sam was diagnosed with AML.

Today was our Winter Piano Recital.

In between, so much has changed.

 Today he played Dancing with Frankenstein. He rocked.

They all did.

Blessed are You, O God, who has brought us to celebrate the ordinary, the everyday, the regular, and make them holy.

Good checkup

Sam did great for his first off-treatment checkup.

He handled the needle like a champ and took his own temperature and blood pressure.

Lab results are GOOD.

I think it will always feel this way - a huge sense of gratitude and relief.

Shabbat shalom!

Climbing the Walls

So many people have asked me for updates on Sam, so I thought I'd just share this picture as evidence of how he's doing:

Yes, he's climbing the walls.

It's all good here in Beit Sommer (the House of Sommer) and we couldn't be more grateful.

Sam has his first off-treatment checkup at the MACC Fund Clinic next week.

The Gifts of Thanksgiving

Thank you thank you thank you!

When I put it out here on this blog and on Facebook that we were going to be going to the HOT Unit on Thanksgiving to bring games and craft kits, I never quite imagined the outpouring from all of you.

Wow.

Then again, I should know better, after how many pictures Sam received!

It was such a joy to pack up all the awesome games and toys and kits....

And then to take them into the unit....which had its own brand of totally weird and wonderful all at once.

Every time we come into the hospital, we have to get a badge. Parent & grandparent badges are orange, patients (Sam) don't get badges. Siblings and other visitors get yellow badges.

This is my first-ever yellow badge. I know that doesn't seem like a big deal...but it means that at this moment I am not here as the parent of a patient. And that is a milestone. Also, Sam got his own badge. For the FIRST TIME.

Sam and David pulled the wagon-load (we had three large bags full, plus a few hand-carries)

 Greeting some favorite nurses and showing off his "missing" central line...

 We set up all the goodies in the playroom...

We were able to see a few friends who are still inpatient and we knew that we were leaving so much joy behind. We put quite a few of the games into the communal game closet, which was in need of a few updated choices (with all the pieces!), and we gave toys to a little guy who was walking around the unit. I know how much this kind of thing  meant to us when we were there....

So I thank you for enabling us to have this moment of return, a moment that felt both strange and wonderful....and to know that there are still so many children and families who are in those rooms....may healing come for all of them.

Happy Thanksgiving to everyone!

Thanks and Giving

I debated many ways to title this post, but in the end, "thanks and giving" seemed appropriate.

We are so very grateful for the news we received this week.

Sam is fully in remission.
His treatment is complete.

I simply have no words to describe the level of gratitude and relief that I feel as I type these words.

It has been a whirlwind of celebration, with birthdays and a special welcome at Sunday School...and today, a crucial step in the journey that signals the end of active treatment: Sam's central line was removed.

Gratitude probably doesn't even begin to describe it.

 

And now for the giving.
Over the last six months, our family has been the recipients of so many wonderful gifts of so many kinds. The time has come for us to become the givers. On Thanksgiving Day, we will be headed up to the HOT Unit at Children's Hospital with games and crafts and treats for the patients, families, and staff. We hope this will be the beginning of many opportunities for us to help make other patients "feel the love" that we felt so strongly from all of you. I know that when folks came into the unit like this, it gave me hope and helped me to realize that there are people on the "outside" who know what it's like.

If you'd like to assist us (we know it's last minute, don't worry, we'll do it again), you can drop off new games or craft kits at either of our offices (Am Shalom or B'nai Torah) or at our house or at my parents' house (for you Milwaukee folks). Feel free to privately message me for addresses. If you're dropping off in our hometown, we will need it by Wednesday morning. Milwaukee folks have til Wednesday night!


From our journey, we have emerged...only to begin a new journey in which we strive to reconnect our family, regroup and reconsider our priorities, and find as many ways as we can to honor where we have been...and where we are going.

I don't believe that our story is particularly special or unique, but I do believe that the outpouring of love from all of you has been. We are so remarkably blessed and we know it. The time has come for us to engage in both thanks and giving.

I will continue to use this blog, periodically, to give updates on Sam and our family, and to offer opportunities to help us help others. I promise not to overuse your love.

If you would like to continue to read our words on a more regular basis, you can visit our personal blogs and subscribe to those as well. We welcome your continued participation in our family's journey!

Michael: AbbaSababa.blogspot.com
Phyllis ImaBima.blogspot.com

From our family to you and yours....a happy, healthy, blessed season of giving thanks.

Shabbat Shalom.

Birthday Boy

Birthdays are important, as I recently said on my own blog.

Today's birthday was extra-special, though.

After all, almost every day in the hospital, we had to say Sam's birthdate for identification purposes. Actually, I made an appointment for myself about a month ago and when the receptionist asked for my own birthdate, I automatically gave Sam's.

It's been on my mind.

This birthday was, by its very existence, special.

(But we tried not to make too big a deal of it. After all, we're trying for normal.)

Still, there were donuts for breakfast.

There was a little party at school (the whole class wore their pajamas and watched Sponge Bob in Spanish. How cool is that?) and a special family dinner.

And Sam got a huge gift from Randi and family - a long-desired turtle. Yes, friends, I have capitulated to a non-human living in my home.

Meet Mega Super Turtle, or MST for short, a Russian Tortoise and the newest member of our family:

Turtles live a long time.
We've already announced that Sam can take MST to college.

College.
Let that sink in, okay?

This kid will go to college.
I believe it.

May there be many many birthday celebrations to come. 

Bone marrow biopsy tomorrow...results next week

Where the heart is...

...HOME.

Shabbat shalom!!!

Running Round(s) {R4, Day 28}

Maybe you'll remember that a few rounds ago (round 2, I believe), I shared my "doctor speak."

Today, things were a little slow to get started in our morning rounds, so I um...took over.

Sam is a 6-year-old boy with AML here for Intensification Round 2, awaiting counts recovery. Today is Day 28 and he has an ANC of 80 and he is afebrile and he wants to get the heck outta here.

They laughed and agreed that today was not the day to go home. A jump from 18 to 70? Huge. A jump from 70 to 80? Not enough to kick a kid to the curb.

Darn. (Okay, I probably had stronger language in my thoughts...but this is a G-rated blog!)

So we got about our day. After Teacher Theresa's time, we had to head downstairs for an echocardiogram and an EKG in the Herma Heart Center.

It's pretty easy and it got us off the floor during the day (when we're normally not allowed to go!), which had its ups and downs. Sam really didn't want to go back to the floor. It helped that on our way back up, we ran into Miss Nancy, the music therapist. She and Sam talked about the music of the Harry Potter movies for a few minutes and then she promised to stop by his room later.

We had a lovely last-minute visit from Marci and Lindsay who were driving through the great state of Wisconsin on their way to their brother Adam's wedding in Minnesota! (Mazel tov, Adam and Melissa! Wish we could be there to celebrate with you!)

Sam resisted doing schoolwork today, but after a rousing 5 rounds of chess with Zeyde...he gave in and did some work.

When Miss Nancy was with us, she told us that on Thursday nights, she runs a group music therapy session on the 8th floor. Those kinds of things aren't usually accessible to HOT patients, since we're mostly restricted to our own space. After she told us, I went and asked our staff if they thought we could-maybe-please-just-this-once head off to the group session??? And they said yes. So at 6:30pm, we tripped off to the 8th floor...Sam wondered how many people would be there and would he be around too many other kids. So we agreed that if we felt that there was too much exposure, we could leave.

Lucky for us - we were the only ones!

Together they composed songs and sang ones that we already know and basically just had a good time.

Then Dr. L came to visit for what has become our regular game of Monkey-In-The-Middle-Sam-Makes-Up-New-Rules-To-Confuse-Delight-and-Annoy. It's a long title, but I think it will catch on soon. At least it wears me him out. I think Sam likes her a lot because he keeps up a running stream of trash-talk. Isn't that a sign of endearment? It sure is from Sam.

Even though I continue to try and manage his expectations, he's had it. He's done. Enough already. He wants to go home. And I can't blame the kid. So perhaps it is our last night on the HOT Unit...and perhaps not. Whatever happens, his body knows best. We just follow its lead. So far, it hasn't led us astray.

One of the songs that Sam and Miss Nancy sang together today rang true for me tonight...

Whoa...We're half way there
Livin on a prayer
Take my hand and we'll make it - I swear
Livin on a prayer
We've got to hold on to what we've got
Cause it doesn't make a difference
If we make it or not
We've got each other and that's a lot
For love - well give it a shot
We've got to hold on ready or not
You live for the fight when it's all that you've got...

We might be more than halfway there but we sure are livin' on a prayer around here....ready or not.
Keep on praying...

Rising Trend and Metaphor Mixing {R4, Day 27}

One of the things that they're looking for is a "rising trend."

Do you think that going from an ANC of 18 to 70 overnight is a rising trend?

Me too.

The staff was quite pleased. Our attending physician actually solicited guesses from the rest of the staff during morning rounds, as to what Sam's ANC would be tomorrow. He himself guessed high. Very high. It was a mite hard to take him seriously with his leprechaun hat on, but overall...spirits are good.

Could it be tomorrow?
Or Friday?

What exactly are we waiting for? Something around 150, probably...although anything over 100 is still considered a "rising trend."


So while we await the continuation of the rising trend, we celebrated a little bit of Halloween.
Dad came for the day and brought Sam's Harry Potter costume.

The two of them participated in the HOT Unit Halloween Party, which had crafts, food, and some trick or treating that I think involved a few stuffed animals (way better than candy, if you ask Sam).

Later on, Sam tested out his new light-up turtle (he couldn't wait for bedtime), and it made a really cool picture: (Thanks Sara, Richard, and Roo!)

I'm alternating between total excitement and a desire to manage expectations. I don't want to get Sam's hopes up for leaving tomorrow, but I want him to be aware of the "last time" that we do things. Today we took a little walk and then I suggested we go back via the "secret elevators." I told him that maybe this would be our last time in those elevators. He liked that idea.

I spent some time today talking with one of the nurse practitioners about Sam's future medical plans. It's hard to believe that we have been at this for five months, and that our hospital journey is about to come to a close. There's a little bit of anxiety about this, since there's quite a feeling of security here, knowing that we are cared for and that Sam is checked and watched and monitored. (We can always call the magic phone number that gets me to the Charge Nurse.) I asked, for the first time, for some statistics. What are the relapse rates? What are the statistics that we will go home and never come back? What are we looking for? How long until we feel completely safe, until we have no more worries? Some of those questions she was able to answer. But others she wanted to check with someone else - to see how Sam's low risk factors figure into the equations. I will get more answers over the coming weeks.

Overall...we are doing well. The light is bright at the end of the tunnel. But what is at the end of the tunnel? I think it's a big forest. I know I'm mixing metaphors here, but once we are out of the tunnel...we're in the woods. And we won't be out of the woods for five years. The woods will probably be lovely, right? Fresh air, beautiful trees, life experiences, trips and celebrations, school and camp and life.

I think we can live in the woods. It will be much nicer than the tunnel.

They don't declare him completely safe, free of risk of relapse, until he's been cancer-free for five years. (Which, if you're calculating, is about his 12th birthday.)

But for today?
I can only think of home.
And of taking my kid there.

Maybe tomorrow.
Or Friday.

Whenever it is...each day, each moment, we will celebrate.
Life is a gift.
And we are grateful.

Today's Chai-light* {R4, Day 26}

*Title totally stolen from Rabbi Steve, who responded with that pun after I texted him this morning!

This morning, when I woke up, magneted to our whiteboard was Sam's lab results.
And at the bottom, our nurse had written:

For those of you unfamiliar with Hebrew gematria, the Hebrew letters that add up to 18 spell the word "chai," which means "life." Yeah...let that sink in, okay? Not bad for Sam's first ANC of the final round...

On his last round, his first ANC was 36 (double chai), which caused me to burst into tears and explain why to our nurse practitioner. This time I taught our oncologist. That's me...#whatrabbisdo.

That was an exciting beginning to our day, because now that Sam has some numbers....hopefully it's all UP from here! I don't want to make any plans (we all know what God does when we make plans) but let's just say I'm pretty confident ready to believe that Sam will be home for his birthday next week. Who's got two thumbs and is super excited? Yes, that would be me.

Okay....moving on to our day. Which was....regular hospital stuff. Except that now Sam is very interested in mealtimes and snacks. As in, who is this eating/drinking machine? He's still not quite as interested in ordering from food service (I mean, honestly, who is?) but he powered through an entire package of strawberries in the last day and a half and he had four Carnation Instant Breakfast packets mixed with an entire carton of milk each time. Plus other meals. So ...wow. Actually, he's currently having a pre-bedtime snack of half a toasted bagel with cream cheese. I spent a lot of today warming up food and preparing snacks. Let me tell you - I am absolutely not complaining!!!!

Other highlights chai-lights of today....
Chess with Bubbie (and yes, he is shirtless. "it's comfortable!" he told me.)

 More chair racing:

 An incredible anonymous delivery this morning - we got boo'd! Thank you!

Also music therapy, hopefully Sam's LAST one!

And one of my favorite moments of the day - three kids with poles (and one sibling) all playing Wii together. It was quite remarkable to hear them all speak the language of video game...they barely knew each others' names. It was also lovely to sit with a couple of other mamas and share stories and encouragement. There's such a bond that we all share...no matter the diagnosis, we have the same kinds of fears and hopes for our little warriors. There are so many times that we're all holed up in our own rooms, it feels like we're all in this together when the kids can play games and we can talk.

Sam is so darn proud of his Bears-fan-dom. It's kinda silly, actually, since he really doesn't know anything about football. He just loves to wear his Bears gear and tell people that he is from Chicago. It does get him quite a bit of attention in Packer-land.

And darn it if he isn't the cutest little Bears fan around:

 

So that's life here in our little nest. I look forward to telling you good news tomorrow (So let it be written, so let it be done...) and counting, along with Sam, the minutes until we skedaddle back across the state line. I can almost touch it, taste it, feel it....breathe it. Until then...we wait.

Crazy Chair Racing {R4, Day 25}

I'm not going to lie.
I was totally bummed to still be in the hospital today, day 25. The day we've gone home twice before.
But you know what? Today I got over it.

One of the doctors said to me: "This is NOT evidence of cancer. It is evidence of beat-up bone marrow."

It just needs time. If they are not worried, I resolve not to worry.
(Tomorrow, they're doing a "manual differential" to let the little automatic blood-counting-gerbils have a day off while a human lab tech manually combs through the neutrophils.)

I look around the unit and I know that there are kids who are NOT doing nearly as well as Sam. I know that all over the world there are kids with cancers of all kinds who are miserably sick. I know this. And so I can wait a few more days...to get it right.


So this was our day....

Sam made everyone on the unit giggle as he realized that rolling chairs make perfect racing vehicles.
(There was a little bit of "shouldn't he be wearing a helmet?")

And he even conned one of our nurse practitioners to race against him.

After her one race, guess who was his favorite opponent? Yep, that's right. Good old mama. Hey, that's a very good workout! Until I slipped off and landed on my tush. But um...I'm okay.

The rest of the day was, again, uneventful. Sam played chess against Bubbie (things I didn't know about my mom - I didn't know she could play chess!) while I slipped off to have a shower and visit the grocery store.

He might be a little bored...or just 6.

self-portraiture by Sam

Today Sam got a great stack of packages, including a pretty amazing one from an artist named Eric Winter. Eric heard about Sam from the ThinkGeek blog (wow) and instead of taking a picture of himself in a superhero t-shirt, he created a superhero just for Sam! I really love that he figured out that Sam loves turtles and swords and incorporated that into the sidekick, too. Sam was pretty excited and donned the Mega Turtle t-shirt right away (as I type this, he is wearing it to bed). Thanks, Eric!

I am constantly awed by the total strangers who have been unbelievably generous to our family, not to mention the countless people that we actually know and love who have been caring and loving. Last night, I lay awake, unable to sleep, mentally composing the words of gratitude that I plan to write when this is all over. I actually considered writing it down, but I couldn't bring myself to "jump the gun" and write the "last" post while we're still here. But let me tell you, I have never been so filled with gratitude in my entire life. This has changed our family forever, but in so many ways, the blessings have had just as much impact, if not more.

So we sit, snugly ensconced in room E583. And we wait.
And knowing that you're all out there, loving us, makes it all a lot easier.
Thank you.