childhood cancer survivor

The following speech was a highlight of the March 2022 St. Baldrick’s event at St. Agnes Parish Center in Rockville Centre, NY. With thanks to Greta, we’re sharing it so others can hear her experience and how she feels about St. Baldrick’s, as a childhood cancer survivor.

“Hi! My name is Greta Ohanian and I am currently 6 years out of treatment for Hodgkin lymphoma. Sometimes I struggle with what to say at events like this because there are so many aspects of cancer that I could touch on as a survivor. But one of the worst parts is how frightening it is to go into a cancer diagnosis knowing how limited the treatment is.

Greta during treatment.

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As we close a difficult year, we reflect on lessons shared by childhood cancer patients and survivors who have faced adversity with grace, courage, and resilience. From their words, come some messages worth remembering now.

Sarah Swaim, age 31, two-time leukemia survivor & advocate

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Editor’s Note: We’ve let Jake, the founder of Resilience Gives, tell us his experience of dealing with uncertainty during treatment.

Jake during treatment

After a few hours of watching carboplatin steadily drip into my bloodstream, I was relieved when my friend Alex poked her head around the corner of the oversized hospital room door. It was day three of my first inpatient stay since beginning my medical leave of absence, and Alex was the first non-family visitor. When she placed her hand beneath the Purell dispenser, I could see a game tucked underneath her arm.

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Each year, the St. Baldrick’s Foundation picks five kids to serve as Ambassadors. In this role, they represent the thousands of kids affected by childhood cancers and remind us of the importance of supporting childhood cancer research.

Take any group of kids and they’ll all have their own way of talking, their own opinions on books, movies, and video games, their own favorite foods.

But there is one thing the St. Baldrick’s 2019 Ambassadors have in common: childhood cancers. Beyond that, they share the support of loving families and a desire to inspire others to raise money for childhood cancer research.

Our 2019 Ambassadors, from left to right: Aiden, Arianna, Sullivan, Gabby, and Brooke.

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Last year, an estimated 174 million Americans – or more than half the total US population – shopped online or in stores between Thanksgiving and Cyber Monday. In only 5 days, online sales totaled nearly $15 billion. It’s safe to say, then, that many Americans saved money pursuing big bargains that weekend.

If you’re saving money during this year’s Black Friday or Cyber Monday events, consider passing it on this Giving Tuesday, Nov. 27. You can do that right now by visiting our dedicated Giving Tuesday donation page.

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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.

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(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.

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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.

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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?

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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.

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