11/12/13

Posted by on Nov 13, 2015 in fatherhood, Leukemia | 2 Comments

REALLY, it’s already been two years?

or is it-

REALLY, it’s only been two years?

11/12/13 is a date I will never forget. The day Jack was officially diagnosed with Acute Lymphoblastic Leukemia. It’s weird how certain memories can seem so distant, almost like they never really happened. Then two years go by and you vividly remember everything in slow motion…like it were yesterday.

The tiny play room sat in the middle of the 10th floor, also known as the Pediatric Intensive Care Unit. Half the floor was separated by the really really sick (immune compromised) and the just plain really sick kids. Angi, Jack, and I decided meeting the oncologist in the play room to go over diagnosis and prognosis would be a good idea. Jack was growing tired and anxious since the previous day was full of poking and prodding. The room was filled with toys, games, books, trucks, a play kitchen, portable DVD players, and a thousand DVD’s to choose from. One of my favorites (The Jungle Book) was lying face down on the bottom shelf, next to the plastic workbenchIn some odd way, this was comforting. Maybe another kid on the floor just watched it, I remembered thinking.

The glass windows surrounding the 10×10 room made the space seem larger than reality. The tiny table and chairs were a subtle reminder how heartbreaking and dreadful this place was. The medical team assured us everything in the room was completely sanitized and wiped prior to our entry.

I still remember the two of us sitting in those tiny chairs trying to grasp her words, “Jack has been diagnosed with Acute Lymphoblastic Leukemia or A.L.L. for short.”

My world stopped. I looked at Angi. The quiver in her lower lip seemed to be moving in ultra slow motion. My hands were gripping the table so hard my knuckles were turning white, yet I was numb. I don’t know why we didn’t cry immediately… maybe we both thought we would wake up from this awful nightmare. Maybe we both knew it before the oncologist delivered the blow, but hung onto hope.

We continued our silence without exchanging a single word or sound. I guess there was nothing left to say. Instead, we did what any family would do- we went over to Jack and hugged him harder than we ever had before; and cried….and cried some more.

We went over the plan with the medical team, asked a million questions, signed a ginormous stack of documents for treatment options, consent forms and other lawyer speak. The fight was on!

I never envisioned asking my wife, “How do we go about notifying family and friends our 4 year old son has cancer?” We called our parents and immediate family and gave them the news.
I tried putting together a mass text to my best buds. It took me several attempts to come up with a few sentences. Nothing looked right; Nothing about this day was right. Not sure why I’m actually remembering the exact verbiage at this very moment, but I am.

Fellas- I love you each like a brother, and if the time came, I’d go to war for you.  I hope you feel the same… Unfortunately, that war has come as Jack was just diagnosed with leukemia. Our hearts are heavy, but we will beat this fuckin thing! Much love

Today marks two years of this journey. I don’t know where we would be without our family and friends supporting us throughout this process. Many of you reading this have followed the FB page we set up back in November of 2013 in order to streamline communication. Thank you for checking in, offering up a meal or hug or beer, or all of the above. This isn’t the life story I set out to write, nor would I ever wish it on my worst enemy. It’s full of sadness; and heartache; and pain; and struggle; and ironically- love and beauty. To say it hasn’t affected my outlook, my marriage, my fatherhood experience, my job, or my everyday life would be a lie. I’m still angry. I’m worried. I’m grateful. I’m sometimes sad. I sometimes feel cheated. I sometimes don’t feel at all… and return to that white-knuckled numbness without words. But, I’m here.  Two years later, we’re here!

Jack has 70 days, 18 hours and 26 minutes left until his final chemo treatment is complete. We aren’t necessarily in the clear at that point, and cannot predict the future or outcome. However, we have high hopes to get our lives back, and give Jack the experiences that every child deserves.

I look forward to the camping trips, beach outings, amusement parks, river trips, and something as simple as playing in the dirt. I look forward to leaving the hand wipes and worry behind as we embark on a new journey. Mostly, I look forward to getting out of the trenches and living life again as a family of four.

2 Comments

  1. April
    November 13, 2015

    A blog like that makes me almost speechless but I had to say that Jack gives me so much hope. We all know you all will “beat this fuckin thing!”

    Reply
  2. Gay Robbins
    November 13, 2015

    You are such a wonderful writer. I admire the way yuu are dealing with the challenges you are facing. Your love of your family spills through your words.

    Reply

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