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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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.