Author: Sheila Quirke

September is Childhood Cancer Awareness Month. Each day I will feature a different guest blogger who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics. 

By Jacob Wagner 

The day when my little brother, Ryan (you can read Ryan’s Story HERE), was diagnosed with cancer it seemed to me as if the earth stood still. Time ceased to move forward. All of it seemed surreal; the severity of it all hadn’t hit me. I took the news as any eleven year old would, and never even thought of the possibility that Ryan might succumb to the beast of a sickness that lay inside him.

For ten tumultuous months, we would fight alongside Ryan. We would cry, and scream, and sometimes laugh, but most importantly, we would savor and cherish every single moment we had with Ryan.

Ryan was an energetic kid, a firecracker of youth and explosiveness. He would dance, shadow box, run around in circles, all sorts of wild things. After he started chemotherapy you could notice the change in his energy. Physically he just seemed more tired.  I soon found myself coming to feel the same exhaustion he was feeling after only months of treatment. He was kicking butt for a while into his diagnosis, and made me think that everything would okay, that he would come through, until things took an unexpected turn for the worst.

We found ourselves in a new hospital, thousands of miles away in another state, where Ryan was introduced to new forms of chemotherapy. Six long, chaotic, painful weeks we would spend there in that new hospital, trapped in a purgatory. I almost lost my brother to surgeries and toxic treatment in that place.

I had finally come to grips with the fact that he may not make it out of the war against his sickness in one piece, and this tore at me for the weeks to come, gnawing away at the wall of confidence and subconscious denial that I had built up around me since Ryan was diagnosed.

We soon found ourselves on a military medical flight back home to Hawaii, and along with feelings of confusion and anxiety, a heavy and abyssal pit formed in my stomach, which I was sure, would swallow the entire plane up in its dark claws.

As soon as we returned home, Ryan seemed happier, full of more energy. He smiled more. We were living on a military base at the time, and previously had to move houses due to his condition. When we returned home, we visited the old neighborhood, where we had first lived before Ryan’s diagnosis, where our friends lived.

I recall a very vivid memory of me, wheeling Ryan around in his wheelchair out in the field area behind the old house. I was a little upset that he couldn’t play and run around like he usually did back there before he got sick, but to my joy I was able to wheel him part way onto the grass, where his friends swarmed him and played around him. He seemed so happy, and his eyes so bright.

I was sure now that he would make it through this. I was sure that he’d get to play with his little friends for years to come, and this moment alone had gotten my hopes up. That was one of the last good memories I have of Ryan.

After two weeks of being home, Ryan passed away in my mom’s arms, the gentle Hawaiian trade winds and the light tropical rain welcoming a new soul into their fold. I feel as if I lost a part of me to the winds, that night. I stood next to my mom on the patio, as Ryan slipped away from us.

I was overcome with such a great sadness, but I was afraid that if I were to cry right then and there I would scare Ryan as he closed his eyes. I waited for the inevitable and when it came and passed, I screamed. I screamed so hard that the back of my throat hurt, and cried so heavily that my stomach and jaws started to both ache.

We all cried and we all screamed, and then we had close friends drive out to say goodbye to Ryan. Not wanting to call the mortuary right away, these friends of ours stayed all night at our house, as my parents cradled my brother’s body. We cremated him and had his ashes spread at his favorite beach. Yet, even after all of these years, those events still feel as though they happened only just yesterday.

I lost my best friend, my playmate, my brother. For the rest of our time in that house, something was missing, something was terribly wrong. I carried that weight with me when we finally moved off the military base, and the pain still emits a dull echo of that fateful night every time I look up at his pictures or see his toys, or every time we visit his beach, or every time I hear his favorite songs on the radio.

I long for the days when he would go swimming together, when we would curl up on the couch and watch our TV shows, or even when he was in that wheelchair, surrounded by friends and family in the big grassy field, still alive.

If Ryan were still alive now, I would tell him that I love him. I would tell him that he was the toughest fighter I’ve ever seen, and his bravery was beyond comprehension. I’d let him know that nothing in this world could ever drive us apart from him, nothing out of this world or in between would be able to sever my love and eternal bond with him, my deeply missed brother.

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September is Childhood Cancer Awareness Month. Each day I will feature a different guest blogger who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics. 

By Amy Aldridge 

Oh, September. You’re a tough month to swallow. You bring a sea of gold, emphasizing my loss and the losses of cancer parents everywhere. What are we to do with you?

There’s a ribbon color for every malady, a day/week/month for every disease with a name. You just happened to be assigned this particular color and cause. You make it very hard for some of us for these 30 days. You emphasize desperation, illness, loss, and great need, sometimes sprinkled with a positive story, but not enough of them. You often bring out the worst in me.

Who am I? Growing up, I was a smart kid, but one who lived in fear of my father, a perpetually angry man. Fear has invisible fingers that hold you so tightly that it’s difficult to break free. Fear lowers your capacity for risk. When you are afraid to fail as a child, you become an adult who is afraid to fail, too.

I was a frightened young girl who wished to be brave. Intrigued by all things British, my interest was piqued by a combination of late-night episodes of The New Avengers, James Bond movies, my fascination with the Royal Family, and my insistence on having the Princess Diana haircut. I thought I would make an excellent spy in Her Majesty’s Secret Service.

I dreamed of solving mysteries that no one else could; of being the heroine. I wanted lipstick cases with poison darts, stilettos with phones in the heels, and cars with rocket launchers. I would be brave, and I would always catch the bad guys. Failure was not an option. Someday, I would not be afraid.

Fast-forward many years. On July 24, 2006, the safe, comfortable life I had built (I never became a spy) came crashing down on me like hot waves of salt water. My daughter was diagnosed with terminal brain cancer on her 12th birthday. (You can read Sahara’s Story HERE.)

That day, our family went to war, and I set out on a mission that was life or death. I’ve tried to find other words to define it, because you can’t or shouldn’t compare a terminal disease with a battlefield in a faraway sandy hell. Or can you? War is hell, right? War is a daily battle, injuries with blood and stitches and triage, needles and pumps and medicine. It’s an ever-changing tactical mission that sees no end.

Trying to save my child’s life when the options were few to none was my version of being surrounded by the enemy. 24 hours a day of being on constant watch, sleeping when we could, coping with unbearable conditions over which we had no control. Cancer’s only mission is to kill. My only child, dying.  Ravaged not only by the disease, but by the weapons of chemotherapy, radiation, and steroids that destroyed her little body a day at a time, over the course of seventeen months.

Mouth sores that burned and bled. Stretch marks and skin tears that required me to bandage her arms and legs to keep them from splitting open and getting infected. She lost the ability to walk and became wheelchair-bound. Her words became very difficult to understand. She could barely chew and swallow. She was helpless, and I was the one trying to find the answer to the mystery that no one could solve.

I was so convinced that I would crack the code. I searched the Internet day and night, finally finding some hope at Stanford University. In the end, it was too late to save Sahara. The timer on the bomb clicked back to zero, and in an instant, our world detonated. The mission was truly impossible; the bad guy had won.

Sahara died on the evening of November 5, 2007. I had failed to save her life. I’ve negotiated with this guilt ever since. Did I do enough? Was I bold enough? Did I make the right choices? Did I miss something? Did I make it worse by taking her so far away from home for treatment, away from family and friends?

The niceties of “you did all you could/it wasn’t meant to be/it was God’s will/she’s in a better place,” have never comforted me. A mother’s role dictates that she should be able to keep her child safe and alive. A mother shouldn’t have to wonder what the differences in treatment might be from one institution to the next. A mother should not be told, “It’s always fatal. Take her to Disney World.” Sahara had already done Disney, and certainly didn’t want to go because she had cancer.

She hated that people identified her with cancer. Not a day goes by that the “what-ifs” don’t sneak into my mind. A parent should not be powerless and afraid. Suddenly, the scared little girl inside me was faced with the unthinkable, and I had to navigate those deep, dark waters with a brave face that hid my terror so that Sahara could not see.

The night she died, the best of me died with her, too. My worst fears had been realized. There was nothing more I could do. Ultimate, final failure.

September pours salt on an always-open wound. It’s the feeling I get when I hear a zipper being zipped. For me, that sound means that the body bag containing my daughter was just zipped shut in my living room. In the heart of baseball season, when I see a San Diego Padres logo, it jolts me into thinking about the fact that Sahara was wearing a t-shirt with that logo when she died. I remember every sight, smell, sensation, taste and emotion. It is a hyper-state of being, this post-cancer-parent’s life.

September, you’re too much sometimes.

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September is Childhood Cancer Awareness Month. Each day I will feature a different guest blogger who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics. 

By Jill Bolling 

“In God We Trust,” found on every penny. Whether heads up or heads down, that penny is a symbol of our faith. Pick it up!

“God only gives you what he knows you can handle.” Seemingly honest and encouraging words, until you hear the word ‘cancer.’ It affects the entire family. Your mind a puzzle full of 50,000 “what if” pieces looking beautiful on the outside like a Monet painting carrying this burden called cancer with grace, while on the inside it looks like a Jackson Pollock painting. Abstract and ‘Convergence’-  bring it all together unifying yourself with this diagnosis. Exigent and vulnerable.

Trust in God.  He only gives you what you can handle.

Truth is, cancer is not a work of God. He did not give us this disease. He did, however, help this parent of a child with cancer overcome a sometimes still haunting diagnosis.

God made his presence known in the soul of my child who innocently shared his tender encounter. “Mom, is it okay for me to skate up to God to play?,” said Kellen at the age of 3 and a newly diagnosed childhood cancer warrior. My response, “Yes, but you need to return for supper.” Selfish.

Or the conversation that included a vision with my father, who had passed from metastatic lung cancer when I was merely 16 years old. I had never spoken of my father’s illness or how he died with my children. They only knew that he was in heaven and our Guardian Angel. “Mom, your Daddy died of cancer, didn’t he?” “Yes, he did, Kellen, but a different kind of cancer, not your cancer.  He didn’t respond to medicine like your body is responding to medicine.” Honesty with simplicity.

Kellen, my first born, a smart, energetic and angelic looking child with his pouty full lips, soft blue eyes, dimples and wavy white blonde hair was followed by four identical looking children over these last ten years: Cooper, Willie, Wyatt and Aaden. The only difference between them is Kellen’s blood went haywire forming a “common” cancer pre-B cell Acute Lymphoblastic Leukemia.  And so our storybook changed.

Chapter 3: Cancer 101 took place of the original Chapter 3: fun filled summer playing in the water, eating watermelon, and traveling to new places with friends and family. The feeling of isolation sets in because the instincts to save your child are the most crucial. This included not going to church, not having germy friends over, no parties, lots of time to think between a toddler’s roid rages, and plenty of advice from friends and complete strangers.

For the first time ever I’m making it publicly known that sometimes I wanted to gently smack the person offering advice. Especially when it came to discussing death, a childhood cancer death. They had no idea how our storybook was to include many children, blissfully naïve adventures, lots of laughs, and hopefully athletic children so they could take care of us as we aged.

Never did I ever think that I would be the parent sitting in a hospital room on the Hematology/ Oncology floor wondering if my child would survive and eventually answering questions about why some kids die and some kids survive until I was.

Kellen survived. He is currently 10 yrs old and just celebrated his 5^th Domination Day (last day of treatment) after starting the 5^th grade. I would be surprised if any of his friends would remember what he had endured. I’m certain that many of his friends’ parents never found themselves sitting on the edge of the bed with hand over shoulder explaining that their fellow cancer friend had died. Where is my EASY button?

Emotionless. Lifeless. Angry. Frustrated. Lost. Selfish. These words all describing the interaction between mother and son discussing a child’s death. In God We Trust. A semi-relaxed household, we have always been honest with Kellen about his disease and equally so describing it to our other children.

I’m aware they don’t fully grasp the concept of death. I know because in desperation I called Childlife for assistance. But Kellen understands it more. His little brother Cooper understands it more. They know that heaven means eternal life and not this sinful life of suffering and disease and hate.

Over the last year we have lost no less than five local children to cancer and Kellen and Cooper knew four of them. They met during camp and played with their siblings. Alike in so many ways and yet different because Kellen is a survivor. Cooper, our 16 month old toddler comic relief at diagnosis, weeps and seeks comfort at the news of death. Kellen demonstrates flat affect. Emotionless. Avoidance. Until Cooper returns to our side to inform us he is crying. Parent failure? Survivors guilt? Frustration? Jealous?

Where is that damn EASY button!

There is no EASY button. My husband and I have always made this marriage and family a team effort. However, the discussions of death, a harsh reality that we all will in time surrender to, left us speechless. Sometimes we found ourselves staring at each other. What do we say? How will they respond? What do we do if the response isn’t what is expected? How much do we tell them?

Fair questions for a topic that naturally instills fear in mature adults. My boys are physically seen as adolescent and yet they have endured more than many adults. Honesty! I didn’t anticipate a death discussion. Maybe I stored the possibility of death in a small space hopefully to crowd it out with more enjoyable events. Truth is I wasn’t given that luxury of rainbows and butterflies for my children.

I do believe I was prepared for this event. You see, I knew my father was present with us in that hospital room. I knew that Kellen’s conversation with God was to remind us he is near. I believe in eternal life and I knew that my Dad was protecting us, guiding us during these most difficult conversations.

Your children need to see that life can be a struggle and sometimes “bad” things happen to good people. That is this life. If you believe in higher powers, your children should know that God doesn’t want them to die, he wants them to have eternal life. Death is inevitable so that we may live forever. One day they will understand. One day we will all be together free of all things evil. Until then… In God We Trust.

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