On This Day…

Five years ago today, we received a phone call. Earlier that morning I had taken Tessa to the hospital to get her labs drawn. She was on a wait and watch protocol for Myelodysplastic Syndrome, and we knew at some point she would likely transition to leukemia. Many months led up to that moment in our living room where my husband and I sat together while listening closely to the voice on the other end of the phone. She had only said my name and I knew. Before she could finish her sentence, hot tears streamed down my cheeks.

Even though we knew this was coming, we still clung to the little bit of hope that this was all a mistake. That her labs and biopsies were incorrect. That there was a chance she could avoid treatment. It was something we told ourselves on the surface to save face; all the while knowing that this was inevitable. Our daughter had cancer and lives shifted forever.

Her body was covered in petechiae. Her skin was as pale and mottled. She was weak and miserable, crying in our arms. Our baby was sick…really sick. On the phone, the doctor urged us to get her to the hospital immediately. She told us to pack bags for at least a week long stay in the hospital while they ran more tests to figure out the best course of treatment. In the midst of packing, I remembered our six month old baby at daycare and my heart shattered. What would happen to our family?

Before leaving town, I pulled up to our daycare to see our littlest babe while my husband and Tessa waited in the car. Unaware of our troubles, her face lit up with excitement when she realized her mommy was there. As I scooped her up in my arms, I wondered when I would get to see her again. I walked away from that house not knowing if that terrible disease would take her big sister from her. Fear won that day and several days to come.

The hours that followed are now muddled memories. People rushed in and out of our hospital room, throwing medical terms and phrases at our blank faces. They asked questions we didn’t have answers to and said things that didn’t make sense.

There were treatment road maps, complicated documents that required signatures, beeping machines and many unfamiliar faces. The food trays that the nurse had ordered for us were cold and untouched on the counter. I quietly rocked our girl to sleep as she received blood products for the very first time, desperately trying to wrap my head around how we were so swiftly caught in the undertow of our current situation.

This was our life.

A small, but significant chapter, in the big book of us.

Like a puzzle, our pieces remained scattered. Each piece just as meaningful and necessary as the next, despite how confusing and frustrating they were on their own. Sometimes coming back together, only to be broken apart again and again.

But even apart, we were whole; and when all of the pieces aligned just right, we created a beautiful scene.

Every year on this day I recall our heartache and desperation. How I spent the first night on that cold hospital bed, hopelessly bargaining with the man upstairs to let me take her place.

For parents like me, diagnosis day isn’t something we can escape. It may become less obvious in time, but the effects of that day linger. From how we plan and prepare to how we confront and overcome, and everything in between.

I do not relive painful anniversaries for the sake of sorrow, rather to remind me how far we have come. To remember the mountains we moved when climbing them wasn’t an option. To pay homage to moments that changed our course; acknowledging that we absolutely can handle hard things in life.

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The Day Before…

I read this somewhere once…

“The day before my child was diagnosed with cancer, I wasn’t a cancer mom either.” 

And it’s true.  I wasn’t.  However, the night before we heard the words “…she has leukemia,” I knew that she already had it.  Under odd circumstances, we had been preparing for leukemia’s arrival for many months.  That night I could see it in her eyes, on her skin and I could feel it in the deepest part of my soul.  But in those last moments at home, knowing life would flip upside down in the morning, I held on tight to what life was like before cancer.  Because everything would change the following day.

The day before my child was diagnosed with cancer, she was free from central lines, machines and chemo.

The day before my child was diagnosed with cancer, she had a head full of thick and beautiful hair that I was madly in love with.

The day before my child was diagnosed with cancer, I had no idea what it meant for life to be crazy–even though I thought our’s was most days.

The day before my child was diagnosed with cancer, she was free of fear.

The day before my child was diagnosed with cancer, a cold was just a cold, germs were just germs; and we didn’t live in fear of either.

The day before my child was diagnosed with cancer, my heart didn’t have to decide which of our kids needed me most at any given moment.

The day before my child was diagnosed with cancer, she cried in our arms in pain and misery but smiled when daddy joked.

The day before my child was diagnosed with cancer, it didn’t exist in my mind.

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Looking back at the day before my daughter was officially diagnosed with cancer, I took for granted the things in our life that were actually blessings–chaos from work and the kids, agonizing over what to make for dinner, organizing school and therapy schedules, complaining about mountains of laundry, crying over little things. And sometimes I was blind to the beauty around me.

The day my child was diagnosed with cancer, I collapsed in my living room.

The day my child was diagnosed with cancer, she was scared, but incredibly brave.

The day my child was diagnosed with cancer, I cried myself completely numb.

The day my child was diagnosed with cancer, she cuddled her blankie in the car during the ride to the hospital.

The day my child was diagnosed with cancer, I left our six month old baby behind to care for her sister.

The day my child was diagnosed with cancer, she hugged her new nurse.

The day my child was diagnosed with cancer, fear took over and I assumed the worst.

The day my child was diagnosed with cancer, our lives changed forever.

One week after her diagnosis. Halloween in the hospital.

One week after her diagnosis. Halloween in the hospital.

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Becoming an accidental pro at the hospital.

Every day after my child was diagnosed with cancer, the silver linings sparkled brighter than before; and I truly understood what it meant to be blessed even in despair.  Nurses became dear friends and crying alongside doctors was common.  There were late nights and long isolated days.  Pain and pride became one while we experienced tribulations and triumphs.

Every day after my child was diagnosed with cancer, we learned something new.  We watched our daughter fight for her life.  I found fear, but believed in hope.  We gave in, threw our hands up and prayed for miracles.

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Every day after my child was diagnosed with cancer, we gained an intense appreciation for those who work in the medical field because they loved, cared for and save our girl while working endless and often heartbreaking shifts.  We learned to advocate for our daughter and for kids with cancer because they deserve more.  They deserve a chance to live a full life outside of cancer.  Kids with cancer deserve freedom from their diseases and a fair shot at just being a kid.

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The day before my child was diagnosed with cancer, I knew very little about pediatric cancer–especially how grossly underfunded it is.  Less than 4% of federal funding is allocated for all kids cancers.  If you want to learn more hard truths and grim facts of childhood cancer, take a look here … or here … or here.

 

The more we turn our cheeks, the less we will help the future of our kids. Yes, it is scary.  Yes, it is unsettling.  But it is real.

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The day before my child was diagnosed with cancer, I was a mom unprepared for what would come; and she was just a toddler living a normal life.

The day my child was diagnosed with cancer, a spark ignited a powerful flame in my heart to fight for kids battling cancer everywhere.  And because of this beautiful face, I don’t plan to stop anytime soon.

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