Wednesday, August 28, 2013

Oh the Places We'll Go - Day +1

I guess I'm still holding my breath. I am amazed Sammy has any breath at all. He hasn't really stopped talking since I got here at 1pm. Phyllis said it was a quiet morning where Sammy slept in a little and no pictures from the morning. I think after yesterday's waiting and excitement, and the power of the moment, that there just aren't enough words to describe the experience. The whole week has been amazing.

Monday our good friend who started this whole journey with us, Nurse LA, visited on her first day back to work after maternity leave. They loved hanging out and ribbing each other just like old times.
Yesterday was such a hurry up and wait day. I don't know what I expected yesterday or today. I should know better than to expect anything. Sammy was, well Sammy (although he did seem a bit taller today). He was glad to see everyone today. He loved hanging with grandma all day and is looking forward to finally being able to use the quilt she made him.
He is glad to have a new birthday to celebrate in addition to his biological birthday. He loved opening up his new Hex Bugs (Thanks to Tricia!!) that crawl up their Hex Bug Habitrails. The amazing Adam Kahan came to delight Sammy with close magic (card tricks and the like) and his guitar and beautiful voice. Sammy loved watching Adam perform his magic tricks and talked about some of the magic he'd learned during the last several months. They spoke of the tricks at hand and how they could improve those tricks and Sammy marveled at Adam's ability to draw the seven of hearts from anywhere in the deck.

After Adam left Sammy told me he is ready for a job since he wants to be able to earn enough money for gems in his games. He then told me he would learn to design games or be a game tester for the companies he loves so that he could get all the gems he wanted. When he tells me he wants a job, he hates that I tell him to write a book about his experience. He thinks it is too hard for someone his age (and doesn't realize he'd have a little help if he asked). No vision right now. I mean, can you say "movie rights?"
Rabbi Jen G made sure Sammy would be ready if he chose a career directing the film of his life story. She sent him this really cool scene marker.

And then it happened. The hour had arrived. The bells rang six o'clock across the commons. And all was still for a moment as Sammy...prepared...for his last bath to protect his skin from his chemo last week.
The moment we all (especially me) thought would never come had arrived. We carefully shielded his central line and PICC line and slowly dipped the boy in his final oil bath. And before we knew it, it was all over. Once again we'd survived 21 baths in 7 days. We'd managed to only remove a modicum of skin with tape and the aquaguards.
And the crowd went wild!!!

Sammy's favorite visitor in the world arrived shortly after the last bath. His brother David walked through the door carrying some of their mother's Monkey Bread (made with real monkey brains...okay, not). There were moments where I thought that David could never arrive sooner because Sammy asked all afternoon when David would show up. They talked about iPad and games, watched a little SpongeBob and never talked about the transplant at all. Just two brothers hanging out as if it were just another day in their life. They sat close. They talked. They swapped ideas. And nothing else mattered in the world. They shared the monkey bread and enjoyed each other's company. And all was as it should be in the world. 

For me it is hard to imagine the difference between yesterday and today. Last week was a living hell, harder to live through and watch than anything else we'd experienced. Yesterday we pulled into the station and today we disembarked. We are all looking around in bewilderment a bit at this new and incredible land. Nurses and doctors are quicker to smile once in a while. The joy is palpable. There is still a long way to go, but we breathe different air today and breathe differently than we did yesterday. And believe me when I say, we don't even know what time or tomorrow will look like. Each day is a new day. We hold our joy in one hand and our trepidation in the other and we try not to allow either hand to fill up too much because we just don't know what each day will bring. 

Our gratitude knows no bounds at this point. So many people carried us and sheltered our spirits and bodies to get us here. So many angels crossed through Sam's doors to make him laugh and smile, and assure him how much he is loved and thought of in the outside world. So many angels who couldn't come in body traveled in spirit, sending messages and missives to buffer Sam's hardships and lift his lows. We will always need you, but we all hope that the days of celebration will out number the days of worry. 

So thank you. Feel our love and gratitude wrap you all up and await all the pictures of our smiling, gleeful Sam as we wander around this new land, this new life of ours. 


  1. You guys will have to turn all this into a book, G-d willing with a very happy ending.
    Refuah Shleimah

  2. It is such an honor and a privilege to be present from a distance as your family walks this path. This post brings tears to my eyes. I'm cheering for those new cells!

  3. Rejoicing with you, Sam, and your super family and super caretakers. Shehecheyanu!

  4. beautiful post. just beautiful.

    and the quilt, too!

  5. Cheering you on from Sam's Nebraska Fan Club! We are thrilled for these first steps on the way to a glorious Shanah Tovah!

  6. I'm playin Rabbi Mike in the movie!!!

  7. I didn't comment yesterday because you had 18 comments and I wanted to leave it at Chai. But I did say shehecheyanu for all of you and especially Sam's new cells!

  8. Sam would do wonders for other boys and girls by telling his story the way nobody can but Sam.