Thursday, November 29, 2012

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.

Thursday, November 22, 2012

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.


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!

Friday, November 16, 2012

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!


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

Shabbat Shalom.

Thursday, November 8, 2012

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.

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

Thursday, November 1, 2012

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...