Beginning of the Journey...Closing the book

 “Beginning of the Journey”

We started this blog over 2 years ago, August 18th 2018.  The worst day of our lives.  Cooper, our 5 year old, our first born, our joy was within weeks of starting Kindergarten, hockey, normal life milestones that come with transitioning from a toddler to a young boy.  He had already transitioned to being a new big brother only 4 weeks earlier when Evyn was born, but the life-altering, earth-shattering changes were only beginning for him.

Cooper was diagnosed with B-Cell Acute Lymphoblastic leukemia at age 5. Today, we announce his continued NED (no evidence of disease) and most importantly, his end of treatment, 26 months later.

We titled the first blog post “Beginning of the Road” because we thought this was a road that had a beginning and an end.  Today, we are publishing, God willing, the final post that we will ever write on this blog...  But this is not the end.  A major milestone, yes.  A celebration of the amazing accomplishments and bravery of Cooper, absolutely.  A public re-affirmation of the support shown us by amazing people that God has put in our lives to hold us up when we had nothing left.  We encourage everyone reading this - please go back and re-read some of the blog.  The stories contained are inspiring, uplifting, and also heartbreaking.

While we laid on the floor at 3am in a cold and sterile hospital room after our child was diagnosed we had more thoughts, fears, and emotions than most parents could ever imagine. We stared at the ceiling wondering whether our child would live, what would become of us as a family, as people. We made a decision that night, and yes it was a decision, a choice, to face this knowing that this was going to to one of 2 things. This situation would either tear us apart or make us love more fiercely than ever. There were only 2 choices because one thing we know for sure is that you damn well cannot walk through fire and come out the other side exactly the same. 

In a pediatric cancer world where 1 in 4 kids doesn’t make it and many marriages fail, people walk, they give up, we made a choice that we were in this together, no matter what. Some things in our life have burned to the ground in order to keep that promise, but looking back we have no regrets about the decisions we made, because in the end we’ve kept that promise we made to each other, to our people within these walls, the people who get it. 

Franklin Roosevelt once said 

 “Courage is not the absence of fear, but rather the assessment that something else is more important than fear.”

 

We found something more important than our fear and that was each other. Fear is what keeps you on the merry go round of constantly reliving the pain of your past. Fear is likely what we will face again, once the adrenaline has worn off, when “cancer is gone and all is normal” (because it isn’t normal, but that’s what people will say) fear is what is left when the tornado is gone and you stare at the wreckage. 

So where we stand is not at the end of the road, but the beginning of a new journey, a journey that the last 2 years took from us. A journey that we finally get to start as a family. Choosing to move forward as a family, either in fear or in faith, is a choice. A decision that no one can make except for us. We will choose once again to move forward and try to allow our trauma to change us for the better. I recently read in a book “if you can’t find the motivation to change you should attach it to something bigger than yourself.” No one can change, and push past fear unless absolutely necessary but you have to make that decision to allow a situation to change you either for the better or to allow it to break you...there are 2 options.

We wanted to leave all of you with two requests.  First, love those around you.  Fiercely! You ALL have the power to change lives when you least expect it.  Simple acts of kindness, moral decency and some common sense can be the difference in someone’s life and you might never know the impact you had on them.  People are all struggling with something.  Some more serious than others, but to them, their struggle is their nadir, the hardest things they’ve had to overcome; their lowest point.  You unknowingly impact those around you every day.  Either for better or worse.  Make them, and yourselves better. Know that helping, that showing up is often quiet and humble but powerful.

Love those who are different than yourself.  Many times, we were prayed over by someone of a different faith.  Not as a way to change our views, but as a way to express their concern and support in the most powerful way their culture and faith can, through prayer. In the same vein, so many times when we fell, when we looked up to see who caught us, it was humbling to see a face that was sometimes unrecognizable, because we had never met them before, but they were there.  They showed up.  Pay that forward! Be the good in the world that maybe has no reason or motive.

Our second request is more tangible.  We were always asked “how can I help” which is hugely appreciated and desperately needed.  Sometimes, the help needed was simply a kind word, a silence, a friend to sit with us in the trenches when there was no digging out, someone to encourage our child and make him smile or forget.  But now that we are moving on past treatment - the help we are asking for is your time.  I encourage all of you, in whatever capacity you can - visit a pediatric oncology unit.  Sit, watch, listen.  Don’t give your input or advice to families there about “how your grandfather battled cancer”, that’s not welcomed or appropriate.  Be silent and observe.  Allow yourself to experience the greatest strengths and struggles these kids go through.  It will change your life. We hope that within pictures you see the heartbreak, you see what cancer does, the pain and the changes his body endured, our child who became hardly recognizable right in front of us, and the smiles that never radiated to our eyes...Because we became good at putting on the face that covered up the times where we felt hopeless. This is cancer. A battle that no parent should ever have to watch and that no child should have to endure. 

Lastly, know this. Everyone will get their chance in the center of a trauma, it is simply a matter of when, and many people for what reason, I will never know bear the burden of several traumas. My wish for you is this. To those of you who showed up and showed us kindness in our time of need, may the world be just as kind if not more kind to you in your time of need. May you be as lucky as we were to have so many reach out a hand. For that we are forever grateful. 

So, here we are.  The end of the Super Hero Cooper Blog.  But this is not the “end of the road” we started over 2 years ago. This is the beginning of the journey, Cooper’s journey.  Despite the fact that he had to be postpone his childhood while he battled an invisible mountain all while watching from the sidelines, despite the fact that the world is facing a global pandemic that will sideline us a bit longer, despite all the times that he had every right to withdraw and play the victim and ask “why me”; HE has come to this new beginning in his story...

And we can’t wait to see what he writes in it!

Much Love,

The Trueblood Crew xoxo