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!!!