Survivorship

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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For childhood cancer survivors, treatment helps them to survive, but often that survival comes at a cost. But what are these costs? And how big is the problem? That’s what St. Baldrick’s Fellow Dr. Nickhill Bhakta wanted to figure out. And as it turns out, that data could be a lifesaver.

St. Baldrick’s Fellow Dr. Nickhill Bhakta works at his desk in St. Jude Children’s Research Hospital. With a portion of the grant supported by the St. Baldrick’s Morgan and Friends Fund, he developed a special statistical tool to help capture the true volume and complexity of chronic health conditions faced by childhood cancer survivors because of the long-term consequences of their treatment — something that hadn’t been done before. Photos courtesy of St. Jude Children’s Research Hospital

Over the years, researchers have discovered that because of their treatment, childhood cancer survivors can be at risk of everything from heart attacks to secondary cancers to stroke. That’s helpful to know, but Dr. Bhakta recognized that something was missing from the data that was available on survivorship. It wasn’t painting the complete picture. It was just capturing the first big health scare, instead of following the survivor through the multitude of chronic, often recurring conditions.

The scope simply wasn’t big enough.

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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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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.

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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.

Learn more about childhood cancer survivors like Melissa >

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Cancer survivorship issues are close to Dr. Brandon McNew’s heart. It’s not just because he treats kids with cancer as a pediatric oncologist — the St. Baldrick’s researcher was diagnosed with leukemia when he was 10 years old. Read on for more about his childhood cancer journey, why he was drawn to pediatric oncology and what he’s doing (with a little help from St. Baldrick’s) to help fellow cancer survivors live long, healthy lives.

Dr. McNew is both a St. Baldrick’s researcher and a shavee. He rocked the bald at a Cedar Rapids, Iowa event in 2015.

For Dr. Brandon McNew, treating kids with cancer isn’t just a professional calling. It’s personal.

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Honored Kid Brooke was diagnosed with PH+ acute myeloid leukemia in 2015. She is now a survivor, but that doesn’t mean life is easy, ‘normal’ or back to a fraction of what it was like before cancer. Brooke explains…

(Left) Brooke during treatment after her 2015 diagnosis. (Right) Brooke poses for a photo during her first day back at school this year.

Cancer survivorship isn’t pretty. When I was diagnosed, I imagined that if I survived, my life after cancer would somehow be sweeter. Maybe I would appreciate the little things more or unlock some secret wisdom that would render me happier, more peaceful. This was believable through my first few rounds of chemo.

Then, I had a bone marrow transplant and became so ill that I spent five months inpatient post-transplant.

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Dr. Noah Federman first decided to become a doctor because he wanted to help people. Mission accomplished, Dr. Federman. Over his years as a physician, he’s helped countless children with cancer, including cancer survivors like 2013 St. Baldrick’s Ambassador Emily. Read on for more about Dr. Federman, his St. Baldrick’s Scholar award and what he envisions for the future of childhood cancer research.

Dr. Noah Federman meets with a patient.

Dr. Noah Federman first met Emily back at the very beginning, soon after she discovered a persistent bump on her right leg — the first sign of a bone cancer called osteosarcoma.

The St. Baldrick’s Scholar has been there for Emily ever since, through the ups and downs of treatment, through her surgery and even now during survivorship, as she prepares to celebrate five years cancer free.

It’s a proud moment for Dr. Federman.

He became a doctor to make a difference in the lives of children like Emily — to help them beat cancer, get out of the hospital, and grow up healthy and happy.

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