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.
What should you say to someone whose loved one has died? Vicki Bunke has some simple advice that comes from heartbreaking experience — her 14-year-old daughter, Honored Kid Grace, died of bone cancer in March. Here’s what Vicki has to say …
Vicki’s daughter Grace grins and laughs in her mom’s arms. Grace was diagnosed with osteosarcoma when she was 11 years old and lost part of her leg to the disease. After her third relapse, she knew her disease was terminal but remained determined to experience everything life had to offer. Photo by Ashton Songer Photography
For 20 years, I have had the privilege of working as a school psychologist. I am honored to get up every morning and go to a job where I get to spend hour after hour interacting with young people. Sadly, this past spring, a young student who attended the high school where I work — and whom I loved dearly — died of osteosarcoma, a childhood bone cancer.
This student happened to be my 14-year-old daughter, Grace.
(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.
From the moment he was born, Ambassador Kellan has been fighting childhood cancer and its devastating effects. But he doesn’t fight alone. His dad, Dan, is right there with him — and Dan wouldn’t have it any other way. In honor of Father’s Day, Dan wrote this letter to Kellan to share how blessed he feels to be his dad.
Ambassador Kellan and his dad, Dan.
As I sit here writing this letter, you are in the operating room at Boston Children’s Hospital. This is a familiar place to you, your Mom and me. As we walked down the halls yesterday to check in, waves of emotion came over me as I reflected on the past six years. We have spent many days and weeks here since your birth.
They’ve told us that your operation will be approximately nine hours, but I know it’ll feel like a lifetime before I see you again. So, here I wait and try to put into words what it means to be your Dad. I don’t know that it’s possible to say exactly what it means to me. Although your smile and thumbs up prior to today’s surgery tells part of it.
Since day one of your life, you have been an inspiration. We watched your battle with cancer begin on the day of your birth. Chemotherapy started on day three. Your tumor resection surgery was month three. Hundreds of visits to the doctor, scans and appointments followed. At 17 months, you got your wheelchair and started to run, Kellan style. At year five we celebrated no evidence of disease — cancer free! Although you are free from cancer, you are paralyzed. Cancer left its mark, but it doesn’t define you or your remarkable life. This year, you were named an Ambassador for St Baldrick’s, an honor I know you don’t take lightly. Your willingness and ability to advocate for all children and families impacted by childhood cancer humbles me. You speak about it from the heart and I am filled with pride when you and your Mother work so hard for others.
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?
It’s National Cancer Survivors month and Nora, a 30-year survivor, has an important message for you — that being a childhood cancer survivor isn’t the end of the fight, not by a long shot. That’s why pediatric cancer survivors need you to fund kids’ cancer research, because more research not only makes more survivors, it helps those survivors live long and healthy lives.
Nora is a 30-year survivor of non-Hodgkin lymphoma. She was diagnosed in March 1988 at the age of 10.
Dear St. Baldrick’s Supporter,
On my 10th birthday, I tripped. That’s all it was … I tripped and sprained my ankle. I was a healthy preteen, who would take any chance to dance around to George Michael or Rick Astley, but my ankle just wouldn’t heal. Months of wrong diagnoses followed until March 14, 1988, when I got the news I had cancer; lymphoma had spread to my bones. I had stage 4 cancer.
In the 80’s, you didn’t talk about childhood cancer. My world began to shrink the day I got my diagnosis. I couldn’t go to school, I stopped being invited to parties, my old friends drifted away and the new friends I made during treatment were dying. Ask any kid with cancer today if this sounds familiar – they’ll likely say yes. Unfortunately, things haven’t changed much and that’s why we need your help.
1. Each year, more children diagnosed with cancer will be cured, joining the growing population of long-term childhood cancer survivors.
Thanks to advances in chemotherapy, radiation and surgical techniques, more children and adolescents are being cured of cancer every year. Today, there are over 420,000 survivors of childhood cancer in the United States, representing approximately 1 in 750 young adults, and that number is expected to exceed 500,000 by the year 2020.
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.
Honored Kid Sully loves to bike, run and wrestle with his brothers like any 11-year-old boy. He even tried out skiing over spring break. You’d never expect that just a year and a half ago, Sully woke up from surgery unable to walk.
Honored Kid Sully loves to bike, run, ride roller coasters and play with his brothers, Cashel and Finn. He wants to be a civil engineer when he grows up and dreams of designing the world’s best roller coasters.
It all started with back pain. It was innocuous at first. Hot baths would relieve Sully’s pain for a while, but it would come back with a vengeance. Finally, after many doctor’s visits, a lot of ibuprofen and no improvement, Sully’s parents, Dan and Jen, brought their son to the ER.
Hours later, the boy was in emergency brain surgery.
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