Childhood Cancer | A Survivor Story
Author: Shannon Miller Lifestyle
It’s National Childhood Cancer Awareness Month, and this is probably the biggest nightmare a parent can imagine: a cancer diagnosis for a child.
The pain, the treatments, the drugs, the doctors, the hospitals, the days and nights of pain and tears, and the possibility that a child might not survive.
The National Cancer Institute says that “in the United States in 2007, approximately 10,400 children under age 15 were diagnosed with cancer and about 1,545 children will die from the disease. Although this makes cancer the leading cause of death by disease among U.S. children 1 to 14 years of age, cancer is still relatively rare in this age group. On average, 1 to 2 children develop the disease each year for every 10,000 children in the United States.”
Though childhood cancer is rare and death from childhood cancer are even more rare, when it happens to you or your family, it can feel like the world’s bottom has dropped out. For those of you that are feeling the agony of childhood cancer, or are feeling alone in the fight, please know that there are many wonderful survivor stories out there.
Here is Amy’s Story, from Maryland:
May 7, 2007 was the worst day of my life. What started as a concerned phone call from my daycare provider turned into a journey that would forever change not only my daughter’s life but that of our family. Katie was 20 months old and just had surgery on April 1, 2007 for Stage 4 bilateral urinary reflux. We thought that would be “THE WORST” thing she would ever endure—surgery. She seemed to recover well. Then she got this funny purple rash. It was random but more intense around her neck. I called the nurse on call who dismissed as heat rash. Ok. Then she had these funny “horns” on the back of her head. Dismissed it. Ok. Well, Katie was a happy-go-lucky baby who rarely cried or complained. She had been fussy at daycare for days. My daycare provider saw the rash and suspected petechiae, a bursting of the blood vessels often characteristic of cancer and blood diseases. I was pulled out of my preschool music class, and she told me I had to come get her NOW. Something was wrong. I was angry and left in the middle of my class.
At the pediatrician’s office, everyone was walking on eggshells as they examined her. My pediatrician said…”It could be nothing or something serious.” He said to pack an overnight bag “just in case” and to go to the ER and have her checked out. I knew something was wrong. I knew it.
There are parts of this story I can’t even type out because it is just too painful to relive it. The look on Katie’s face. Sitting in a diaper on the examining table playing with my green bead necklace. The nurse as she shut the glass door and started bawling. I knew. I knew. I just knew. When the doctor came in I collapsed on the bed screaming. I have felt that amount of pain as he said it was leukemia and that they want to airlift us to Children’s Hospital in Washington DC. Everything started spinning and I just remember screaming “NO.” I vaguely remember scrambling to get on the ambulance and crying with my sister the whole way down. Katie strapped to a gurney in the back. I was not allowed to sit with her.
I didn’t sleep for days. I don’t remember eating. I just remember my beautiful daughter being pinned down as people struggled to get blood, start lines. It really is a fog. The head oncologist sat us down and talked about the treatment. The drugs. The side effects. The hair loss. It was all a blur.
Was she going to die?
No. We knew the cancer was caught within 4 weeks because of the bloodwork for her surgery on April Fool’s Day. Because of that, being a girl, and her age…the best scenario was on her side. Katie was a rapid responder which meant the Cancer was gone in 4 days after the initial onslaught of chemo. She would undergo 2 1/2 more years of daily chemotherapy.
It sucked. I had a 3 yr old and all I could think about was…how am I going to do this? I don’t know how I did it… but I did.
There were a lot of miles put on the car back and forth to the hospital. Katie endured things that a child shouldn’t have to. She didn’t start talking when other kids did, the doctors think because of the treatment, her age, and the developmental situation. She gained tremendous weight because of the massive amounts of steroids. I learned to clean broviacs and chest lines and how to respond when the 20 month old rips it out of the chest. I endured everyone’s opinion on “why” she got cancer and broke a little each day thinking that it was MY FAULT she got cancer.
It sucks.
Throughout the whole chemo experience, I saw Katie’s true spirit. She is a surveyor in every sense of the word. She loves fully and is so caring to everyone she meets. She is also shy at times and struggles with multiple learning disabilities as a result of the drugs and delay in development. But what else could we do. Katie struggles with weight issues as do many children who have childhood leukemia. I continually struggle with people’s comments about overweight kids because they don’t know her back story.
Part of me stopped living for while. I gained a lot of weight and put myself far back in priority. I found out I was pregnant in the first few months of treatment and spent many night in the ER very pregnant worried about what I would contract from all the sick kids. What could I do?
Even though we had great healthcare, I am still paying off the debt accrued from this experience. Lost wages, copays, treatments, hotels, food, guilt spending, you name it. I would do it again though.
So……the bright side of cancer; can you believe there is one?!?!
We are stronger because of it. One day I looked at Katie, and I decided I don’t want to be overweight and unhealthy anymore. I am not giving life any reason to cut me down. Katie did nothing to deserve or bring on cancer…so why would I fill my body with crap and not make it the healthiest I could. I lost 70 lbs, started working out, biking, running, and have since competed in several triathlons and half marathons.
You appreciate the little things in life and take a step back when people talk about the horrible “things” that happen to kids like the common cold. Maybe we are jaded.
- You love your children just that much more.
- You cry a little more at the little things.
- You never forget how special this life we are given is.
- You realize bad things happen but don’t have to consume us.
- You realize positive thinking goes a long way.
- You realize a lot is out of our control.
In the end, when I get tired or stressed, or those last 5 miles seem hard, or I don’t want to go for a work, or when she is having a breakdown…when I get upset, I mutter a simple phrase to myself:
SHE IS ALIVE!