September 23, 2015

My Side of the Story

Once again, September is upon us. For me, it used to just mean my birthday month was here and fall was fast approaching. Now, it means something completely different and exponentially more significant. September is Childhood Cancer Awareness Month. The childhood cancer story is an altogether too common one. If you disagree with the prior statement, you may need to adjust your understanding, as cancer is the number one cause of death for children today. With 16,000 kids being diagnosed each year in the United States, it is likely that you know someone who has been affected by this tragedy, or will in the future. However, I am not telling the story of a cancer patient or survivor today, as that’s my brother’s story to tell. Today, I’m telling the story most people haven’t even considered exists. A story that holds pain and hope, and is not acknowledged by many as a story worth telling. I’m telling the story about a sibling of a cancer patient. I’m telling my story.

We take things for granted. That’s not really breaking news for anyone. We don’t take the time to slow down and eat, so we go back for more food. We don’t appreciate a friend the way we should, and miss them when they’re no longer a part of our lives. We always wish for the next season, better weather, or the next big thing. I am not separate from this phenomenon. However, as a 9 year old, I had much less of an awareness of this. I took for granted my family dynamic, the ease of my childhood, and the health that my brother and I both possessed. That changed instantaneously when my brother was diagnosed with Acute Lymphoblastic Leukemia. I was in the third grade.

Initially, it was all very confusing. I was little, and I didn’t fully understand the disease or what was happening. Prior to the diagnosis, my brother had intense back pain that debilitated his walking and participation in routine life. The pain ended up being five compression fractures in his vertebrae due to the cancer. The day that the pain got to a point that he couldn’t stand up, my parents took him to the hospital and me to the Razavi’s house, a close family friend. My time spent at their house was a bit of a fog. I know I was scared and confused but looking back I honestly had no perception of the severity of what was happening around me. Even though I didn’t know what was coming around corner, I do know I was welcomed unquestioningly into their home and treated with compassion and kindness. I am forever grateful to them; they were with me at the beginning of the journey and continue to support to this day. They are the first of many families I feel immense gratitude towards. They head up the list of people who opened their home to me when my family had to go to the hospital, and I had to attend school (going to the Whites was definitely one of my favorites though.)

A following moment of impact was when my dad came back from the hospital and took me home. My grandparents were here, and the four of us sat down in the living room for my dad to tell me my brother had cancer. He tried to explain he was very sick, but would be all right. My immediate reaction was laughter and then silence. I was in shock and wanted to be anywhere in the world but the seat I was in. In a whirlwind, I announced I was playing outside and ran out the front door. Immediately I encountered a circle of neighbors who had seen my dad come home and were waiting to find out what was going on. This interaction made me realize what was happening was very, very, real and very scary. It marked the first time I cried about cancer.

Most people have a general idea about the pains of cancer. It’s unlikely you’ll find someone who is willing to argue with you about how much it sucks. For me, the parts you’d expect to be upsetting didn’t bother me. I wanted to go see my brother in the hospital. His doctors will never forget me, as I was the first girl who was in a patient’s hospital bed with the patient nowhere to be found. I did funny things like that all the time. The beeping machines and sterile smell didn’t bother me, I was willing to do anything to get a laugh out of my brother and to spend time with him.

When I say I was willing to do anything, I mean literally anything. When he would have to have nightly shots at home that burned and made him nauseous, I learned how to play FIFA just to distract him. When his hair was nearly all gone, I made a comedy of it, and have photographic evidence of us decorating his scalp with stick on earrings and face paint. I answered ceaseless questions from others about how my brother was doing, with as much of a smile as I could muster. I didn’t want my brother to see me upset, and I didn’t want people to ask about him. Asking about it meant people were worried, and it made me paranoid that they thought he was going to die. Talking about it out loud made it more real, so I internally abhorred that. I was uncomfortable talking about it in public and even more uncomfortable with the personal dialogue I was having internally.

Will my brother die? When will I have two parents at home again? Why do they have to go to the hospital every time he gets a fever? Do people really think that bringing cookies is going to help, all he does is vomit food up! Why does no one ask how I’m doing with this? How AM I doing with this? What happens if he is okay… and I’m not?

As humans, we want normality. Normality should not be confused with having a mundane life, as no one wants that. But possessing normality means we have security in our routine and life is under control. Normality makes us feel safe, confident, and successful. There was no normality during this period of my life. I didn’t feel normal, my thoughts weren’t normal, my brother didn’t look normal, and my interactions with my peers and authority figures weren’t normal.

There are few moments of hell that were really something else and although I’ve tried, I could never forget. The first was when my brother’s hair started falling out from the chemotherapy. He was taking a bath in the bathroom on our main level, as he couldn’t get up the stairs, couldn’t stand in a shower, and needed assistance. Through his tears: “mommy… my hair is falling out!” is something burned into my memory. This marked the dehumanization of both my brother and me. I lost my childhood innocence, and my brother lost control of his body. It was fighting itself, and stealing what most of us consider to be constants in our lives.

Another moment that I still replay often occurred at Camp Sunshine. Camp Sunshine is an organization that works with families of cancer patients. It is through this organization that I met the people who are still some of my closest friends today, and the people who made me realize I wasn’t alone. One night, on a weekend retreat with the organization, I was sitting with two of my closest friends on the bathroom floor of our cabin. We were telling our stories and crying. One of the girls looked up at us and asked why her two year old sister had to die. Two. Years. Old. At this point, her sister was very sick and my friend was not at all convinced she would make it. So here was a teenage girl, looking me in the face, asking me why her sister had to die and why this happened to us. How could God be real, when this was happening? We sobbed and discussed for hours. Eventually, morning came, tears were dried, and a bond was formed. The questions may have been left unanswered, but one thing was for sure. Whatever happened, we weren’t going to do it alone. Camp Sunshine gave me lifelong friends. It’s where I met the first guy I ever loved. It’s where I learned that normality really isn’t necessary, healing is possible, and cancer SUCKS more and more each day it is allowed to continue. I am forever grateful for this organization.

Presently, I’m a high school senior. My life is pretty darn good. I am blessed with a lot and have hope for the future. But if you would have told the nine year old me this, I would not have believed you. It is nearly impossible to see the light at the end of the tunnel when your mind convinces you there is nothing but darkness surrounding you. This is why you should never tell someone going through personal hell that ‘it’s happening for a reason.’ I did not understand this, and was not comforted by it. Research is showing that siblings of cancer patients have similar amounts of post-traumatic stress disorder (PTSD) as veterans returning home from war. Today, I deal with effects from this and work hard to stay positive. I’m determined more than ever to stop this cycle and be a positive force for change.

Less than 4% of money from the National Cancer Institute is allocated towards childhood cancer. NCI spends 584 million dollars on clinical trials for breast cancer and 26.4 million on pediatric cancer, highlighting how severely underfunded this problem is. Many schools and sororities love to host ‘Pink Outs’ and socials for breast cancer awareness month, while many people don’t even know that September is Childhood Cancer Awareness Month, the official color is gold, and it was recently officially recognized as so by Georgia Governor Nathan Deal. I mean I get it, pink is a cute color, everyone loves the “Save the Tatas” bumper stickers, and many know people affected by it. I am not arguing that, or lessening the importance of it. But I’m asking, can we put up the same fight for childhood cancer? Can we show these kids that although they’re out of school, out of sports, and away from their families, they’re not out of mind? Can we donate money to lower and eventually abolish the mortality rates for these kids?

Even if contributions can’t be made monetarily, there is a lot you can do to help this community. Host a social event benefiting a deserving charity. Pray for those affected. Wear a gold pin. Spread the word and help to arm the world with knowledge. Get creative with it, you’ll feel good helping someone and it definitely will not go unnoticed. No act of kindness does. At the bottom of this post, I’ll be listing charities I recommend for donations for the specific reason that they are dedicated specifically to childhood cancer. I encourage you to research them and if your heart calls you to do so, make a donation and make a difference. The kid you save very well could have been my brother.

In conclusion, I hope there is something you as the reader can take away from this. What I went through was a dark chapter in the story of my life, but in the end: I won. I won because I learned compassion. I learned gratitude. I learned that sometimes, it’s okay not to have the answers. I learned that family is first, and laughter is always welcome. I learned that everyone has something terrible going on in their life at this very moment, even the people who seem to have it all together.

I’m Johanna. I’m a sibling of a survivor of childhood cancer. But I’m also so much more than that. This is part of my story, but this is not my whole story. And I can’t wait to share the good that is to come with you.
http://www.curechildhoodcancer.org
http://www.rallyfoundation.org
http://www.mycampsunshine.com
http://www.curingkidscancer.com

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Join the conversation! 4 Comments

  1. Cried reading this, thanks for sharing such a close story ❤

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  2. Very well said. I sometimes wonder if the siblings had it worse. Lizzie was only two when Margaret was diagnosed and she suffered separation anxiety for many long years. With that said, we both have much to be grateful for and we are enjoying a wonderful life. Your blog post was very insightful and I know your parents and James are very proud of you!! 💛

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  3. Wow, this was so beautiful, inspiring, and moving to read. Your posts are all amazing, eloquent, insightful and so so wise!! I admire you so much, and I’m so proud of you. Love you always ❤ xxx

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  4. Johanna, as I read your story, I cried and relived those dark days… and wished we could have done more. I thank the Lord for how this story, unlike some others, ended with your family (you, your mom & dad, your brother, your grand-parents, your uncles) surviving through this ordeal. AND, you and your brother becoming two MAGNIFICENT individual. Love you all.

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