Tuesday, December 31, 2013

The Year that Was

On January 4, 2013, Sam rang the bell to signal the end of his treatments.
The first week of 2013.
On March 29th, he was wheeled down the hall for a bone marrow aspirate to confirm what the doctors were pretty sure that they already knew...relapse.
On August 27th, his new stem cells were welcomed into their new home.
On November 12th, another bone marrow aspirate confirmed, yet again, what our doctors were pretty sure that they knew.

And on December 14th, our incredibly well-loved Sammy took his last breath.
It just seems so unfair and horrible, so crazy and unbelievable, so inconceivable...
From the fullness of hope in January through the twists and turns of the summer and to the ultimate depths of December...
The year 2013 was a roller coaster. Ups and downs and all arounds.
Stop the world, I want to get off...
In 2013, we lived each minute, each moment. We never took a single bit for granted.
How could we?

I will never ever ever understand.
And yet, I will always be proud of this year. Of the work we did all year long, of everything we did for Sam and for all our children. I will always be proud of the way that we kept Sam healthy and happy, of how we made each day possible and how we never let up in our belief that we would get through this. We flushed those darn lines and we ran that darn micafungen and we washed our hands and we kept him out of the hospital all summer long, through multiple rounds of chemotherapy and bone marrow aspirates and tests and worry and fear…we uprooted our family to live at the Ronald McDonald House and we went to art therapy and music therapy and family dinners…our kids went to camp and school and the library...we went to the museum and the zoo and yoga and pottery, we watched movies and we played games, we played outside and we spent time with friends…we sucked the marrow out of each day, even as his marrow continued to fail him. But we did not fail him. Our doctors did not fail him. We did everything humanly possible from our end and I will always believe that our doctors did the same from their side, to the very best of their medical knowledge. And we still did not get what we wanted.
And I will never ever ever understand.

...So we face 2014...our first year without Sam.
I am paralyzed when I think of all that he will miss. I am overwhelmed and breathless when I imagine the future and he's just not there. Yet I know that we will awaken each day, and we will move forward, even if it feels like we're slogging through a thick fog, even if it feels like we're just moving for the sake of moving, even if it feels like we're faking every moment...we will keep going.

2014, here we come. Be gentle on us, please.
New Years' Eve - December 31, 2008


  1. This summer I started following Superman Sam, even though I don't know you guys. I couldn't help it once I came across your blog, because I felt like I'd met Sam just by reading about him!

    When I read good news, I'd announce it to my coworkers and smile all day. When I read bad news, it motivated me to be generous, live bigger, and love the little things, as if that would help Sam. On December 14th, I shed a lot of tears. I've thought of Sammy every day at some point.

    As I'm sure you have seen from so many other people who haven't met your family, I have been changed by Sam's spunk, courage and example, and by your family's strength. Thank you for sharing your journey with all of us.

    One thing I hope for this new year is to make a difference to kids like Sam in return for the difference he, and you--and your whole family--have made to me. And I also so hope this year brings a whole lot of love, strength and peace to all of you.

  2. Late night, late year, Sammy forever anytime our heart beats. Not to understand, just to be with you. Yes, gentle, we need that.

  3. I apologize if you hear from me twice -- I wrote a long comment and it got eaten (I think!) so I'm trying again.

    I can only imagine what this is like for y'all. It's inconceivable for me, for so many of us who've been reading -- all of us who have never met Sammy but fell in love with him and read every day that you posted and exulted when he rang that bell and mourned when he relapsed and felt the news in November like a devastating kick to the heart. There's a Sammy-shaped hole in my life; and I know it isn't one billionth of the hole y'all are feeling.

    You did do all the right things. You gave Sammy stories and laughter and walks and endless love. You gave your other kids the stability of your love. It's no wonder Sammy was Superman, given his super-parents.

    May 2014 be gentle. May 2014 bring you healing and wholeness. May Sammy's memory be for a blessing.

  4. You are amazing and I love you! And, yes, you will get through this, too -- all of you together...with Sammy in your heart.
    xoxo from NYC.

  5. you did all you could for sam plus more! may the coming new year be filled with good health, and warm loving times for your family.

  6. I have been honored to follow Sam's story for several months. I wish for you and your family a new year of peace and good health. I think Sam is still with you all in a heavenly, spiritual, guiding way. Bless you all, truly. And I am so sorry for your tremendous physical loss of your dear boy.

  7. Followers from across the country have shared the roller coaster ride with you and the family. We have laughed and smiled at successes and cried with the sad times. Most of all, we have been inspired by Sam and all of you. We look at each day as a gift and we live each day with hope and promise. Thank you for keeping us grounded in spite of your difficulties. You are truly an inspiration to so many people you have never met.

  8. And you should be so very proud of everything you did when Sammy was here, and how you continue to do so much good and act so selflessly for others even as you grieve. Maybe it will be those extra dollars you raise that will be responsible for the cure that will save other children in the future.

  9. If I could give you a transplant of life energy, of heart, of solace, I would—though you hardly need any of it as you so well observed. You sucked the marrow out of the last year. You possess an abundance of life energy and heart, so perhaps it is only solace that I can offer.

    I have followed Sam's story for months now -- several times I tried to comment but the weird web wouldn't take my comments so I was a silent supporter.

    I'm hoping it will accept this note to let you know so many more people than you may be aware of are sending you silent love.

  10. Phyllis, I live in Atlanta and my rabbi Michael Weinstein posted a few of your blog posts on Facebook and I started reading them. And reading. And I am sitting here sobbing, feeling your pain (even though I can't possibly know what you are feeling). My family doesn't know what I am doing, and if I told them, they would say, "stop reading that, it's just making you sad." And it is, so very sad.

    And yet, I also feel so uplifted... the things your family did for this beautiful child, how you tried to protect his spirit (and the rest of your family) when it was impossible to protect his body. The beauty of your writing fills me with love, and the hope that if I were ever in your place, that I could do so with as much dignity and grace as you have. Even in the midst of your grief, you shared it with all of us. I hope that has brought you some level of comfort.

    I hope 2014 will allow you to rise above this place of pain, and find that you can remember Sam without it hurting so much. He was such a special child, surrounded by so much love from all of you. God bless you.

  11. Phyllis, what can I say? You guys are amazing. You worked as a family. But sometimes there are things we can't control.
    May you all enjoy good health and lots of smachot and laughter.

  12. The world grieves with you for the fact that Sam is no longer among us here on Earth, that we now enter a new year without Sam. Though we have not met and you do not know me, I grieve with you and I cry with you.

    I so relate to what you say here. 2013 will forever be the year my Caleb got sick, the year my Caleb died. But it was also a year of blessings beyond measure - of feeling the closeness and the love that going through having a child with cancer brings. Though it was the year of my worst nightmare, I am so sad to leave it behind.

    I am so sad that we enter 2014 without our beloved sons.

    Sending much love to you, Phyllis, and to your whole family.

  13. As I have followed your story, with its incredible highs and lows, I have been so moved, as I continue to be. Wishing you and your family a year of blessings and love.
    Stefanie in Milwaukee

  14. I lay in a quiet house listening to the fireworks outside signaling a New Year a new start. I think of Sam and am grateful for all I have and hope that in 2014 you can find joy again. Everytime I hear or see fireworks I will forever be reminded of a new Superhero.

  15. This post has been including in the Shiloh Musings: Bo בא Come! Havel Havelim and the Sh'vat Kosher Cooking Carnival.  Please check out the carnival, visit/read the other blogs, link and share, thanks.