Tuesday, October 30, 2012

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.


  1. Phyl....can we make it happen that I can play chess with Sam online? We could use Chess with Friends or Chess.com. I'd LOVE it!


  2. Here's to waiting with you. Hope that those ANC numbers rise quickly in Packer-land, and that NYC gets power and water back to those of us below 34th Street. I'm with you...waiting is no fun!

    xoxo from a dark NYC.