Dear Tessa: Three Years Remission

Dear Tessa,

We celebrated three years remission from leukemia yesterday and tomorrow you will visit your oncologist. Sandwiched between the two days is a trip to get labs drawn. These are regularly scheduled labs to check your TSH (thyroid) and CBC (complete blood count). The latter of the two bringing the most anxiety for obvious reasons. And right now your mama is nervous.

I see you every day and I know you are fine. But knowing what I know about leukemia and your history with it keeps the fear fresh in my mind until I can actually see your lab results on paper. I have fooled myself into thinking that taking you to get lab work done would get easier the further we got out from treatment, but the reality is that it is not easy. Ever. There is no simple, painless, straightforward way to go about drawing blood from a small child.

My heart has raced all morning and my nerves are shot. Experiences such as labs open the door to days passed. It is as though we are suddenly catapulted into unknown again, while at the mercy of things I still lack control over; and hoping with every ounce of me that we can ease our minds once more.

You will put on a brave face because that is what I will ask of you. Holding you tight as you cry, I will tell you how proud I am of you and how much I love you. When you are not looking, tears will run down my cheek but I will remind myself to wipe them away before you notice.

While the anxiety attempts its takeover, I think back to yesterday and how quickly three years have gone by.

How can I feed the fear when you have reached this incredible milestone? 

Today when I told you I was taking you to get blood drawn from your arm, I told you it was okay to be scared and that I would be there. You grabbed my face with your little hands and said, “It’s okay Mom. I can do this! Okay Mom? I can do this! I will be so brave.” 

From a once very sick little girl to a now strong and healthy big girl, you have really grown. You have a t-shirt that say “This Girl Won’t Stop.” There is a reason it is my favorite, and it isn’t because of the gold glitter font. Although that certainly helps.

Three years of growth, change and endless opportunities to live like a kid again. The reward of remission far exceeds the angst I may occasionally feel. Most importantly, you are happy.

Love you sweet girl,

Mom.

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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.

go gold tessa