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In my sister Olivia’s opinion, “survivor” is a complicated word. It evokes a multitude of meanings, including pride, uncertainty, guilt, gratitude, hope, and, perhaps the most unapologetically real yet the most unspoken: being alive.

Olivia is a childhood cancer survivor. At seven years old, she was diagnosed with a type of cancer known as a Wilms tumor in her kidney. It was stage IV and had spread to her lungs and main arteries. She had less than a five percent survival rate.

When a child is diagnosed with any life-threatening disease, especially cancer, the focus shifts to the child suffering from that disease—as it should. But what is often forgotten is how the entire family is affected. Understandably, we often think of primary caregivers, in most cases the parents. Very rarely do we hear a sibling’s perspective, like mine.

I am going to share what it is like watching your sibling experience a cancer diagnosis, treatment, and life beyond childhood cancer.

Diagnosis

In a matter of seconds, my idea of a “normal” childhood had changed forever.

On the first Sunday of July 2007, I woke up to a quiet house. I came down the stairs to find my mom walking in the door with a look on her face I will never forget, trying to find the words to tell me my younger sister and only sibling had cancer.

Unable to fully comprehend what the word “cancer” meant as a nine year old, I remember asking my mom a series of questions. What is cancer? Is she going to die? Is she going to lose her hair? Is this my fault?

Treatment

In the weeks following her initial diagnosis, the life I was accustomed to had disappeared. The little things I often would obsess over had vanished. Now I had something and someone more important to focus on.

Instead of riding my bike around the neighborhood with my friends on summer afternoons, I was often helping my parents clean out my sister’s port line, lying in her hospital bed reading her Dr. Seuss books and trying to get her to smile, and playing tic-tac-toe in Huntsman Cancer Institute’s waiting room while she was getting radiation.

When Olivia started chemotherapy at Primary Children’s Hospital, the impact of her illness became apparent in a matter of weeks. I would race to pick up the strands of her hair off the ground before she had the chance to see they had fallen out. The more obvious her disease became, the more invisible I felt.

I was often silent in times when I should have spoken up because I felt no one understood me. I never would have wished for someone else to be in the same situation, but I longed for someone to share things with, who felt the same way I did, who felt the same emptiness.

I was also constantly terrified, sad, anxious, and frustrated, and I felt personally to blame. My feelings were complicated and only got more complicated by the constant changes.

Advice

I am just one of millions of sisters and brothers who have had a sibling affected by cancer, and each of our stories is unique. There are endless recommended suggestions and approaches to address the complex needs of children like me. What I found most helpful is when my parents provided me with honest and accurate information, when I was able to be actively involved in the treatment process and the hospital environment, and when specific time was set aside for me one-on-one.

More Than a Decade Later

Many medical professionals told us Olivia would not make it to her eighth birthday, let alone her ninth, and few imagined she would be cancer free today. The road to today has not been easy, but I consider myself one of the lucky ones.

In my eyes, my sister is a “survivor.” But when I think of her, that isn’t the first word that comes to mind. Instead, the first word I think of is “courageous.” Watching her battle cancer, come back from cancer, and push herself beyond what someone would have ever thought possible has inspired me.

Although being a sibling of a pediatric cancer patient is an unthinkable role, I have been profoundly impacted by Olivia’s courage, and I am a stronger person today because of her.