What Does it Take to Beat Cancer, Fly on a Zip Line and Go to School Without Sight? Bravery Every Day
Honored Kid Matthias was diagnosed with retinoblastoma when he was just 3 months old, leaving him blind. But that hasn’t stopped him. Today, Matthias is a childhood cancer survivor and an independent 10-year-old who is learning to navigate the world without sight. As his mom, Katie, shares, he’s one brave kid.
Matthias was just a baby when doctors had to remove his eyes to save his life. Since then, he’s learned to read braille and use a cane to help him get around. Photo by Jen Sherrick Photography
When Matthias lost his eyes to bilateral retinoblastoma nine years ago, we never could have imagined how happy and full his life would be. He is a hiker, traveler, and adventurer who has visited 23 states and two countries. He loves sports, especially hockey. He is obsessed with learning about weather, and he is a good student. He is a loyal friend and a fierce advocate for pediatric cancer research and disability rights. He has shaved his head five times for St. Baldrick’s, traveled to Washington D.C. twice to talk to legislators about the STAR Act and is a guest speaker for a disability awareness organization.
(Left) Sean in treatment at Memorial Sloan Kettering Cancer Center in New York. (Right) Sean with his mom, Marcia, and dad, Richard, during his graduation from Indiana University.
Honored Kid Sean Kligler graduated from college in May. The day was a tangle of emotions – happiness and sadness both.
“At graduation, I was happy — all those years of schooling finally paid off. I was able to get a college degree,” he said. “Of course, I was sad as well. I really enjoyed my time in college and I made some really good friends along the way.”
But there was another emotion mixed into that bittersweet day. It was gratitude. That’s because when Sean was 5 years old, he was diagnosed with childhood cancer. And when you have cancer, surviving to graduate college, or even attend college, is anything but guaranteed.
Honored Kid Zoe was diagnosed with acute myeloid leukemia when she was a teenager. Now, almost four years after finishing treatment and getting the news that the cancer was gone, Zoe is taking a look at what she’s learned during her cancer — and cancer-free — journey.
Honored Kid Zoe Wagner is now 19 years old and has been cancer free for four years.
The anticipation of upcoming milestones and the overall exploratory nature of the teenage years make the age of 15 a common time to be naïve – and naive I was. Life was simple and my carefree spirit allowed me to believe it would always be that way. This trusting nature also led me to ignore the severity of the disease symptoms I was having for months. As these symptoms got worse, my uncomplicated mind created uncomplicated explanations for the way I was feeling. I told myself that I was always tired because I was a teenager, and that this exhaustion was the cause of my daily headaches. I blamed my newly heavy periods on ordinary hormonal changes, bruising on being clumsy, unusually pale skin on it simply not being sunny enough out, and weight loss on, well, it happens. It wasn’t until red needle-prick like dots appeared all over my legs that I requested to go to the doctor.
Rebecca smiles with her 2-year-old daughter, Sophie.
Childhood cancer had already taken so many things from Rebecca Morrow. During treatment, her hair dropped out twice. She missed her entire seventh-grade year. Her social life evaporated. The treatment devastated her developing body. Sometimes when treatment got really tough, her drive to survive crumbled.
So, when the doctors told a teenage Rebecca that she’d likely never have children of her own, she shrugged it off.
Rebecca had already lost so much to childhood cancer. What was one more thing?
June is National Cancer Survivors Month and St. Baldrick’s is dedicated to funding research that saves more lives and helps more survivors! Thanks to donors like you, we’ve funded $17 million and counting in survivorship research grants, so kids with cancer can thrive after treatment ends. Take a peek at just a few of our grants that are making a big difference for childhood cancer survivors…
2014 Ambassador Lauren is a childhood cancer survivor and dreams of becoming a pediatric oncologist. She says she wouldn’t be here without childhood cancer research.
1. Dr. Jonathan Fish with the Feinstein Institute for Medical Research, St. Baldrick’s Scholar Grant
Dr. Jonathan Fish with the Feinstein Institute for Medical Research in Manhasset, New York.
Thanks to funding from the St. Baldrick’s Foundation, Dr. Fish and his colleagues were able to form the ‘Survivors Facing Forward’ program at New York’s Cohen Children’s Medical Center in 2008. Since the beginning of the St. Baldrick’s award, the program has grown to follow over 625 survivors and is now one of the top survivorship programs in the New York area. The program provides survivors with an array of services – from oncology to psychology, cardiology, fertility counseling and many more – that are coordinated to meet their unique needs and help them live full, healthy lives. In addition, the program has served as a powerful platform for research into the challenges faced by survivors, including iron overload, vascular resistance, adherence to screening recommendations and genomics.
Today is the first day of National Cancer Survivors Month. To kick it off, 2014 Ambassador Lauren shares what survivorship means to her and gives us a peek into what life is like as a childhood cancer survivor.
Diagnosed at age 14 while still in high school, Lauren is now 20 years old and is pursuing her dream of becoming a pediatric oncologist, so she can devote her career to both to the treatment of kids with cancer and to the research to find cures.
June 7th, 2012 is a day that will forever be etched into my memory. This was the last day of my freshman year of high school, but also the day my life was forever changed. After eating dinner, my mother began shaking in her seat as my stepfather informed me that the tumor that had been removed from my abdomen was malignant and so were the surrounding lymph nodes. I had stage 4 neuroblastoma.
Marianne’s daughter, Melissa, is a 31-year survivor of pediatric brain cancer — essentially, she’s a miracle. But being a survivor doesn’t mean that the childhood cancer journey is over. Just the opposite. Here is Marianne with the story of a recent difficult chapter of Melissa’s ongoing struggle with the long-term effects of her treatment.
Marianne’s daughter, Melissa, with her nurse of 31 years. Melissa was diagnosed with brain cancer as a child and has since struggled with severe long-term effects from the intense treatment she received.
It’s been over 31 years and it can still make my heart race with fear. Cancer. Cancer. Cancer.
Melissa, my daughter, has lived independently for over 17 years, despite limitations caused by treatment for pediatric brain cancer. Seventeen years after finishing treatment, she began suffering through many seizures and 8 strokes. She was forced to quit her job with Disney and rely on disability benefits to pay her bills.
Joey Chamness has grown up from being St. Baldrick’s very first Ambassador to become a longtime shavee and the VEO of his college event — helping fundraise for childhood cancer research to the tune of thousands of dollars. Why does he do it? Because this survivor knows firsthand how important it is to find better, safer treatments and cures for kids with cancer.
(Left) Joey rests and watches movies during his treatment for osteosarcoma. (Right) Now a survivor, Joey speaks during a St. Baldrick’s head-shaving event.
21-year-old Joey Chamness considers himself lucky.
When it comes to fighting childhood cancer, Honored Kid Tyler is a triple threat – he’s a survivor of kids’ cancer, a shavee and a nursing student! Why is he passionate about conquering childhood cancers? Because this three-time cancer fighter doesn’t want more kids to go through what he did.
Tyler smiles after his shave with 9-year-old Honored Kid Ally.
While Tyler was in the hospital, he became very good at pretending that he was asleep. He overheard all sorts of things – things that doctors liked to sugarcoat when he was awake. Like the fact that they thought he was going to die.
A childhood cancer survivor, Brittany Ross smiles during her long-awaited wedding day to her fiance, Patrick.
When Honored Kid Brittany Ross was told that she’d be lucky to live another three weeks, she didn’t react with sadness. She didn’t bury her head under her hospital bed blankets and cry or ask, ‘Why me?’
She was mad. She was fired up. She was determined to beat childhood cancer.
“They made it seem like I had no chance,” Brittany said of her diagnosis in December 2000. “At this time, I was like, ‘Look, I’m 15 years old. I haven’t really started living my life yet.’”
And she had a come-back that any teenager would be proud of.
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