Fighting On For SuperTy
Posted on September 30, 2013, 4:00 AM
By Cindy Campbell
We call him SuperTy because he was our little fighter. Ty Louis Campbell graced this earth for five beautiful years, and before he left he made it a better place to live. His story of triumph and tragedy has inspired others to rally against childhood cancer by raising awareness and supporting research initiatives geared toward better treatment options. Treatment like immunotherapy that hurts the tumor without hurting the child. Therapies that have higher survival rates and fewer detrimental long-term side effects.
Imagine five kids diagnosed with cancer. Statistically, one will not survive the first five years of treatment, and another will die within 30 years due to long-term treatment effects such as recurrent disease, secondary cancers, circulatory and respiratory disease. 2 children will survive 30 years, but suffer life-threatening, disabling and/or chronic health conditions. Only one child will live 30 years without any severe, long-term health conditions. One out of five is simply not good enough. After all, these are children. So many of whom are just babies at the time of diagnosis!
The medical protocols children currently endure are severely toxic and they take a huge toll on their quality of life during treatment, and for a lifetime beyond treatment for those that do survive. Ty’s story is one that plays out this unfair truth every step of the way.
How quickly I became “aware” of childhood cancer that fateful day in August, 2010. An MRI showed that a tumor was pressing against Ty’s brainstem. Immediately I imagined my perfect baby undergoing chemotherapy and losing his golden curls. Little did I know that cancer is so much more than losing your hair.
I tried to be so strong for Ty. I wanted him to feel empowered. SuperTy can do this! He joined the ranks of Amazing Grace, Brave Bee, Mighty Mikey, Warrior Wes, Rockstar Ronan, SuperMax, Greyson the Great…! I could go on to fill pages of such monikers because childhood cancer is not rare. SuperTy was far from alone. Who knew?
When someone is diagnosed with cancer, they often receive what is called a “road map.” It outlines the treatment plan over the course of the next 6 or 12 months, and so on. I learned within our very first week that you might as well burn it. There is no set course of action. There are only bumps in the road. Then road blocks. Trees down, fires and smoke blocking the route, explosions so powerful they will knock you off your feet and off your course yet again. With every few steps forward, we faced several steps backward or off to the side. The greatest lesson I learned throughout the journey was to stop looking ahead and instead take it one day at a time.
After his very first tumor resection Ty was too weak to walk, and for the rest of his life he would never walk independently again due to countless complications. It was the treatment and the resulting side effects that destroyed his quality of life while trying to save him. Not the cancer. But what choice did we have?
Over the course of two years and two months, Ty endured 20 surgeries, 11 cycles of various chemotherapies, 45 rounds of radiation to the brain and brainstem and 60 two-hour sessions in a state-of-the-art hyperbaric oxygen chamber. He had severe infections of the central nervous system four times throughout treatment. His speech was compromised and there were often times he was unable to swallow so he was fed through a g-tube. Chemotherapy tortured him with side-effects like mucositis, vomiting, neuropathy, and overall weakness. He spent more than 225 nights in a hospital bed. My husband and I begged his doctor’s for immunotherapies, dendridic cell vaccines, and other less invasive alternatives, but nothing was yet available for his particular type of cancer.
One year after radiation therapy was completed, Ty was finally cancer-free and recovering well. Just when we thought he might finally get back on his feet, he suffered a post-radiation brain bleed and brainstem necrosis that left him paralyzed from head-to-toe, unable to even hold his head up. The very treatment that saved his life, robbed him of his ability to sit up, move his arms or feed himself. His little mind just couldn’t comprehend what was happening to him.
Despite all of this, he never stopped fighting and he never stopped smiling every step of the way. Ty Campbell was indeed “super” in every way. They all are.
I went from being a mom who used glass bottles to avoid potential toxins in plastic, and questioned whether or not he should ever eat anything that wasn’t labeled organic, to a mom who used plastic syringes to administer toxic, severely destructive medications every day. He was even on steroids to diminish swelling that caused high anxiety and sleeplessness on top of everything else. At 3 years old he was begging me not to give him his “angry medicine” anymore.
I always believed that he was suffering so much because we will all get the greatest reward. That he would get better. That our love and determination would prevent the other shoe from dropping. We managed to keep it suspended in mid-air for a long time, but eventually that shoe hit the ground… hard. He came home with us on hospice care exactly one year ago, and died in our arms on a beautiful Wednesday afternoon, just days after his fifth birthday.
Ty’s fight against cancer was really bad every step of the way, and his story is not unique. His is the reality of childhood cancer, but it didn’t have to be this way. Children need better treatment options, designed specifically for their little bodies so that they can tolerate treatment without losing their quality of life. And so that they don’t suffer so terribly from the side effects of treatment years down the road.
We are so grateful for organizations like Stand Up To Cancer, St. Baldrick’s and so many other nonprofits that are committed to funding innovative childhood cancer research. Because the clock is ticking. I hear it every day as I scramble to share Ty’s story in support of the cause. Children like Mighty Mikey and Super Max are waiting, and their lives depend on breakthroughs in research.
Since losing Ty, we have been encouraging others to celebrate the joys of childhood in his honor, and in honor of every child who ever battled, is battling, and will battle cancer. To allow their children to jump in muddy puddles on their behalf (one of Ty’s greatest aspirations). To give piggyback rides to bed, to play with glitter, to get downright messy and have fun in celebration of Ty’s spirit, because that is how he always wanted to live his life. If only he had the chance to do so.
Cindy Campbell is a cancer mom blogger and childhood cancer advocate. Cindy lives in Pawling, NY with her husband, Lou, and four-year old son, Gavin. She continues to maintain the blog she started in 2010 that tells the story of Ty’s cancer journey, and life after his loss. It can be found at www.superty.org.
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