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Fighting On For SuperTy

Posted on September 30, 2013, 4:00 AM
Fighting On For SuperTy

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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Comments

Posted by rachel | September 30, 2013 2:22 PM

Brings tears to my eyes! My nephew is currently fighting cancer. Meduloblastoma…I pray that one day he can be a kid again. You can follow his journey on his Facebook page Prayers for Lucas The Holloway.

Posted by Nicole | September 30, 2013 2:38 PM

I’m a childhood cancer survivor myself… At the age of 13 I was diagnosed with a brain tumor called Medulloblastoma I went through a year of Chemotherapy and six weeks of intense radiation therapy to my head and spine. I am now 28 years old and doing well but am suffering the side affects due to radiation and chemotherapy treatment. I just had a hysterectomy in December and have memory,, thyroid, and many more affects due to the harsh treatment. I’m very fortunate to be alive and here today… smile

Posted by Audra | September 30, 2013 3:08 PM

I love you, Momma! So beautifully told and painfully re-lived. We will never stop fighting for SuperTy and therefore Supermax and all of our treatment buddies.

Posted by Donn | September 30, 2013 3:53 PM

It’s because of Ty Louis Campbell that my eyes have been opened to the horror of childhood cancer.  I really had no idea how bad it gets for these kids, how grim the outcomes really are.  Now that I am aware - the injustice of it makes me so angry.  To know that even in September, the month supposedly dedicated to childhood cancer awareness there is still so little - and that the Breast Cancer Marketing is already hard at work looking to get our dollars to support more “awareness” of their cause.  I do not wish a breast cancer diagnosis on anyone!!!  I am so grateful that all this awareness and money raised for this cancer has done an amazing job of improving treatments and outcomes for so many people.  But at the end of the day, these kids deserve much more, so much more!!  Ty should never have suffered the way he did - as a mother it rips my heart in two to think that this beautiful little boy went through so much.  I would gladly have taken his pain if I could - and I think most people, if truly aware of how these kids suffer - would offer to do the same.

I volunteer my time for the Ty Louis Campbell Foundation because things need to change.  I support the Campbell’s in their work to make it so no other child has to go through what Ty did.  I wish I could do so much more….and I admire all these families affected by cancer, that are working to make a better tomorrow for other kids…...the MaxLove Project and their Thrive initiative, the McKenna Claire Foundation, the Rockstar Ronan Foundation, Kai’s Village - bless these families and all they are doing.

Posted by Debbie Mantia | September 30, 2013 5:51 PM

Cindy you are an inspiration…Ty a true SUPER HERO!
God Bless xx

Posted by Lisa & Alex Reda | September 30, 2013 6:12 PM

Love you to the moon & back my dear friend!!! You are strong, devoted, selfless, beautiful, honest, loving & courageous. We will always be here ... Xoxo

Posted by Kris Hannigan | September 30, 2013 6:43 PM

Cindy you are one of the strongest people I have ever read about the work you do is AMAZING!!! My daughters HS Cheerleading team raised Money last March for Super TY. I can not imagine even the thought of loosing a child to this awful disease. I lost my Mom the morning I got married and a Rainbow followed me all day. She told me the evening of our rehearsal that I needed to give her permission to leave so she could attend our wedding. It killed me but she was there just like TY is with you everyday in spirit. I wish you peace and wonderful memories for today and Always and thank you for the Great work you do. God Bless You and your family <3

Posted by Bonesteel | September 30, 2013 7:16 PM

DONN….  I couldn’t agree with you more!  I was introduced to childhood cancer through Ty.  I am currently trying to raise money to donate to this cause & halfway thru the month of September, there are already commercials trying to raise money for breast cancer.  And absolutely by no means am I trying to deminish breast cancer…...  BUT HOW ABOUT WE FOCUS ON THE MONTH OF SEPTEMBER!!!!  I found myself becoming angry at these commercials.  How do we get September as big as October????

Posted by Trish Williams | September 30, 2013 8:03 PM

Once again beautiful TY and Cindy have brought me to my knees in tears and sorrow. TY I think of you everyday, your name is common to hear in my home daily!! You are the ultimate superhero! And your sweet, amazing Momma works so hard for your cause. My heart break and holds you all at once Cindy..I dont know how you go on without this perfect little man but please know he and you made such a difference in so many people’s lives, like myself. Ty lives in all our hearts forever. I just had spine surgery but the minute I recover enough I am volunteering at local pediatric cancer wards (NY,NY) and bringing awareness everywhere I can. I Love TY’s Smile Of The Day! I logged on daily to see it. Im so sorry Cindy & Lou!! I MISS him for you! Thank you so much for sharing your story. You are Forever in my heart!! <3

Posted by Melanie | October 01, 2013 8:06 AM

Beautifully said, as always, Cindy.  You are truly a gift to every parent and child.

Posted by Pegi Chesney | October 10, 2013 8:10 AM

What a beautiful story, Little boy and courageous Mom to write about his journey.  Yes, I too weep thinking about this as I went through this with my sister but she was 58 and understood better what was happening.  Nonetheless, it was so painful to witness the vomiting, weakness, crazy paranoia from the drugs…By now with all of this technology and 24/7 living we do, there has to be a cure and one that doesn’t tax the body so dramatically that it never is the same.  Somebody, somewhere knows more than we are allowed to know about how to fix this disease forever.  We got on top of the Bleubonic (sp?) plague didn’t we and that was before technology. There are answers and there are cures and without sounding extremely negative about this, I cannot help feel there is too much money to be made to cure this completely and that’s the sickness we live in..

Posted by Bill Hartwell | November 11, 2013 6:56 PM

My son Zach is battling medulloblastoma. He was first diagnosed in February 2011. We were told that he had a brain tumor. We were sent to a larger hospital where the surgery would be done. The surgery was done on March 4th 2011. I call it “the day I kissed Zach goodbye.” Zach is a very artistic and musical person. Before the surgery, he had a leading singing role in a local childrens theater. He sang in and won his eigth grade talent show. He made dozens of animations. He was in his high school play. He was headed to the all state choral competition. His drawings were scattered from one end of our house to the other. He and his brother were beginning to write and perform original music. His future seemed very bright. Then he had the surgery. As the week after his surgery passed it was obvious that something was wrong. He lost the use of his hands and arms. He could harldy speak. His eyes were badly misaligned. He could no longer stand or sit independently. Finally the doctors figured out he had posterior fossa syndrome. This was caused by the surgery to remove the tumor; not by the cancer. So we know where you are coming from. Not only does Zach have brain cancer, many of the things that he loved were taken from him by the treatment. I am writing this as I sit in a hotel near Mass General Hospital in Boston. Zach relapsed in August and had surgery to remove more tumor. He is getting radiation treatments now. He is improving physically but he still can’t stand or walk independently. He is back to drawing. He won’t sing because he can’t get out the music he hears in his head. He will have some sort of chemo in January. We asked our doctor about the number of kids who get posterior fossa syndrome. He said that the official odds are around 25% of kids who get surgery in the posterior fossa area of the brain but he believes it is more like 30%. Too many kids getting their lives doubly disrupted!

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