“Life does not stop with cancer.” One family’s journey through pediatric cancer.

 

Guest Blogger, Scott Kramer from Dancing While Cancering

Life does not stop with cancer.

But as a parent, stepping onto a pediatric oncology floor for the first time, it sure feels like it does.

Our daughter, Maddie, was diagnosed with a rare form of cancer at just two-and-a-half years old.  No warnings.  No preparation.  No predisposition.  On diagnosis, Maddie’s world – and our world – was torpedoed from a world of preschool, playtime, and Peppa Pig into an unfamiliar hospital environment…and chemo…and cancer.

And for a brief moment, life felt like it came to a crashing stop.

But as we settled Maddie into what would be her new hospital home away from home, we eventually came to a realization.  Slowly but surely, with Maddie beginning a 52-week chemotherapy protocol, we derived the strength to give her what she deserved more than anything – the ability to continue to be a kid.  So day after day, hospital stay after hospital stay, we transformed our hospital room into a home.  Curtain hooks became holders for paper disco balls.  White hospital walls were replaced with bright streamers and decorations.  A window with nothing but a medical record holder was transformed into a home for window gel clings and greeting cards.  The window sill was now a bookshelf.  Empty spaces were now occupied by plastic Disney figurines.  And the beeping of machines was drowned out by the sound of music in the air.  Sure, the technical name for our hospital was “The Ann & Robert H. Lurie Children’s Hospital of Chicago.”  But that’s not where we were anymore.  We were at “Lurie’s Place.”  A magical and special environment that we were able to cultivate for Maddie with the help of our child life team.

That transformation would come to define our journey by Maddie’s side.  A journey of holding on to life and joy in the face of all the darkness that cancer brings.  And so while the darkness returned 8.5 months after Maddie’s initial diagnoses…and while Maddie ultimately left this physical world all too soon…we still stand strongly by the ultimate lesson that Maddie gifted us:

That life does not stop with cancer.

From the moment Maddie passed, our family made a commitment to ensure that Maddie’s life would be remembered as an inspiration.  To ensure that her life would forever remain a source of good to the world around her.  And that the dark world of cancer would continue to be filled with her brightness.

As of today, on the strength of Maddie’s love, that commitment has become a reality.  Every year, thousands of parents will step onto a pediatric oncology hospital floor for the first time.  They will see those bare white walls.  They will hear the stirring sounds of unfamiliar beeping machines.  They will have their playtime replaced with chemo.  But at least some of these special patients will receive a gentle reminder from Maddie.  Because every newly diagnosed pediatric cancer patient at 15 hospitals across the country receives a “Smile Pack” courtesy of Dancing While Cancering, a 501(c)(3) nonprofit formed in Maddie’s honor.  Inside the Smile Pack, families will find some familiar transformative tools such as streamers, paper disco balls, and a wireless speaker.  Delivered by our partners in joy, our cherished child life specialists.  Carrying a message from Maddie.  A message that she reminds us day in and day out.

That life does not stop with cancer.

If you’d like to learn more about Maddie’s inspirational journey, check out her memoir, Maddie’s Miracles, available on Amazon.  Written by Maddie’s dad, Maddie’s Miracles is also a source of light and love – with 100% of the royalties donated to cancer charities.

We will be giving away a copy of Maddie’s Miracles to one lucky winner.

Choose one or more ways to enter:

1. Sign up for email notifications at ChildLifeMommy.comand leave a comment below.

2. Facebook: Follow Child Life Mommyand tag a friend.

3. Facebook: Follow @Dancingwhilecancering and leave a comment about the giveaway.

4. Instagram: Follow @ChildLifeMommyand @Dancingwhilecancering, tag a friend in the post.

5. Twitter: Follow, Like and RT the post to @ChildLifeMommy and@DWC_BringJoy.

Good Luck, the winner will be chosen on 4/5/20.

Related Posts:

Podcast: Scott’s Story- A Daughter with a Rare Cancerous Tumor 

 

 

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