Sunday, June 9, 2013

One Year Later

I told the story at the beginning.

I always imagined that June 12th would be a painful, terrible day for us.
The day they told us that Sam has leukemia.

But today is a hard day too. Today is the day everything was set in motion.
June 9, 2012: the day we took Sam to the emergency room in Wisconsin for the MRI that would forever change our lives.

The day that the ER resident said, "I spoke to the oncologist on call."

I don't remember hearing much after the word "oncologist."

I do know that last night, when Sam and I had a very brief visit to the ER (all is fine, just a little over-worried mama checking out a low-grade fever and crabby Sammyness), we were put into the SAME ROOM we'd been in....I tried not to lose it.

We've come so far.
And yet we're nowhere and everywhere all at once.

A year has gone by, and Sam's body is still locked in a war with itself.
He is brave because we tell him that he is.
He is wise because we ask him questions that no one should have to ask a seven year old.
He is funny because we don't want him to see us cry so we try to make him laugh.

Our lives are not what they were. No matter where we go along this path, we are all forever scarred by the past year and the years to come. Michael and I, David, Solly, Yael and Sam...all our friends and family....we will never be the same.

We were supposed to be in Florida this week, watching sea turtles hatch and visiting the happiest place on earth.

Instead we're headed in for chemo and consults with doctors who have scary titles.

A year ago, Sam "graduated" kindergarten.
Who knew that his blood and bone marrow were already rebelling against him?
I search these pictures, looking for answers that aren't there.
Kindergarten graduation day
I took this picture below a year ago, wondering what it was like to have my kid's blood pressure taken...I have most definitely lost count of the thousands of times this cuff has been wrapped around his arm....and I don't know whether to laugh or cry about the fact that I see this picture and think about how this green cuff is now too small for him and I remind the ER staff to use the blue cuff (larger size) because it gets a better reading. Because that is what comes to mind and it is...real.
June 9, 2012
A year later we are stronger and wiser. We know what questions to ask (sometimes) and we know how to navigate the systems. But we are still worried and scared, we are still waiting and wondering.

But a year ago we never imagined the outpouring of love and support we would receive. We never imagined how our communities (real and virtual) would rally to support us through prayer and food and love and gifts and financial assistance. A year ago we never imagined that we would grow to love our nurses and doctors and consider them to be a part of our family. We never imagined that we would make friends with other parents with sick kids, that we would laugh and cry with them, and celebrate and mourn. We never imagined how the HOT unit would come to feel like a place of safety, how driving into the hospital brings us just as much comfort as fear. We never imagined how many good times would be interspersed with the bad ones. We never imagined how much knowledge we would acquire and how much we could hold onto and how much we could let go of. (We never imagined how many lasagnas we would eat and how much coffee we would drink.) We never imagined what how much our family could sacrifice and miss and yet gain and grow....

It's been a year of our lives. The journey is far from over.
But we're still here. And for each day, we continue to be grateful.


  1. You are truly amazing! I pray for you each and every day! Sammy is an amazing kid and we are all wishing and hoping for him to keep fighting the fight! Love you!

  2. What a year y'all have had. I continue to think of you and of your beautiful family and of Sammy every day, and to hold y'all in my prayers.

  3. On August 12, 2012 I was diagnosed with AML with a flt3 mutation at the age of 20. Due to that stupid mutation, I had no choice but to get a BMT. In November 2012 I had my BMT (well technically a SCT)and I am 7 months post transplant (as of yesterday) and I am currently cancer free! :D If you have any questions please feel free to email me at My name is Samantha by the way...Sam for short :) Sending you many positive waves <3

  4. I have known many many children, and adults, beat the awful rap of leukemia, in its many forms. Keep up the good fight, and keep the faith; it's all so worth it. You have a host of plentiful prayers to back you up and sustain you. Sam will prevail and conquer this monster!! XOXO

  5. May G-d give all of you health and strength and faith, too.

  6. What a year...what a reflection. I will continue to be with all of you virtually and as always, I am sending you lots of xoxo from NYC!

    ~ Jane.

  7. Beautiful, sad, inspiring. Considering everything you've all been through and the odds you've faced, the important part of the story is that you've made it this far. You're still there living to fight another day. And another, and another. Where there is life, there is hope. Where there is hope, there is another blessed, precious, cherished day. We love you. xoxoxo

    1. Hi Sammy, have you been watching the Blackhawks playoff games? I think those hockey goalies have really hard jobs, don't you? They have to keep their eyes on that little black puck all the time even though it's moving super fast in all directions. The Hawks goalie, Corey Crawford, must have amazing reflexes. He swats pucks away before I even see them coming. During the last game vs. the LA Kings I think he had 16 SAVES. Wow! i just think thats amazing and thats for just one night. He has to do that all the time. I wonder if it is hard for him to sleep at night. He might even have funny dreams like he's in the goal and a million pucks are being shot at him all at once. The other night I learned that when hockey players fall down on a puck in that strange position where their legs fan out, its called The Butterfly. I know that our star players, like Patrick Kane and Jonathan Toews, are very very grateful to have such an amazing goalie protecting the Hawks net. Don't you? I am going to be watching the Stanley Cup Finals when the Hawks vs. the Boston Bruins. Maybe you will watch too. I'm going to say a special prayer for Corey Crawford because I think he has a really hard job. And I'm going to cheer for him extra loud too. P.S. I'm a friend of your Dad's from temple and my Mom is a good friend of your Dad's mom, just in case you were wondering. GO HAWKS!!!!!