retinoblastoma

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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Dr. Chintagumpala’s specific interests include the management of children with all brain tumors, retinoblastoma, bone tumors and kidney tumors. He serves as chair of the Retinoblastoma Sub-Committee for the Children’s Oncology Group and is a leader in conducting clinical trials involving children with brain tumors and Retinoblastoma.

Dr. Rodríguez-Galindo is a member of the St. Baldrick’s Scientific Advisory Committee. His research focuses on retinoblastoma, bone sarcomas, histiocytic disorders and rare childhood cancers.

What is Retinoblastoma?

Retinoblastoma is a cancer of the eye that only occurs in children and typically in very young children. Two-thirds of retinoblastoma patients are diagnosed before they’re 2 years old and more than 90% are diagnosed before turning 5.

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As we wrap up National Volunteer Week, today we’ll meet two more volunteers with very different stories: one is the mom of a child diagnosed with cancer; the other, a researcher who’s devoted her career to early detection of childhood cancers.

Both will show us that it doesn’t matter how you get involved – just that your involvement is crucial to the work of the St. Baldrick’s Foundation.

Jessica’s daughter, Mya, and friend Brendan are the faces of “Two Tiny Heroes”.

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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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A child’s eyes see the love in their parents’ faces and the joy of their siblings. They see the vibrant colors in a box of crayons and the sparkle of rain on a flower. Sight helps kids navigate their classroom, their playground and their world. But what happens when pediatric cancer attacks that precious sense?

With retinoblastoma – an eye cancer in children that is usually diagnosed before the age of 3 years old – a kid can lose their vision to the cancer and their long-term health to the harsh treatment. They can even lose their lives.

That’s what tumor immunologist Dr. Vanessa Morales-Tirado and her St. Baldrick’s Summer Fellow, Zachary Goldsmith, are working to change.

Our Summer Fellow grants give students the chance to work in childhood cancer research labs with expert mentors. Think that’s pretty cool? Then learn more about St. Baldrick’s grants >

Dr. Vanessa Morales-Tirado, with the University of Tennessee, works with Zachary Goldsmith, a St. Baldrick’s Summer Fellow and PhD candidate, in the lab.

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Anyone can get cancer — even babies. Dr. Erin Breese, a St. Baldrick’s Fellow studying infant leukemia, explains the signs, symptoms and treatment of babies with cancer, and how research is helping pinpoint better therapies so babies with cancer can grow up to live long, healthy lives.

Can babies get cancer?

Unfortunately, cancer can occur at any age including during infancy. According to recent statistics, roughly 23 of every 100,000 babies are diagnosed with cancer each year.

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Tacey Raye first battled cancer as a baby, losing her sight in the process. Now, years later, the high school freshman and Texas rodeo queen is facing yet another diagnosis. Help kids like Tacey. Donate today.

Tacey Raye fought retinoblastoma soon after she was born and had both eyes removed by the time she was in first grade. Eight years after being declared cancer free, she’s fighting childhood cancer again.

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2013 Ambassador Matthias was diagnosed with retinoblastoma, a type of childhood cancer, when he was just 3 months old. The treatment left him permanently blind, but five years later, he’s cancer free and starting kindergarten. His mom, Katie, shares this update.

Matthias (left) and his older brother, Magnus, on the first day of school this year.

This surgery allowed him to be cancer free for the first time in his life, but it left him permanently and irreversibly blind.

I lifted him from the recovery room bed as he slept, and the nurses helped me navigate the tangled web of tubes so we could settle into a rocking chair. I rocked and sang softly to him as he awoke for the first time to a new world, one in which he was healthy but completely blind.

On August 4, 2014, just five short years later, I hugged Matthias and held his hand as he boarded the bus for kindergarten. I kissed him goodbye and again guided him into a new world. It was almost as terrifying as the day he lost his vision.

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After childhood cancer took Matthias’ sight, Christmas changed forever.

Some of the changes were difficult, and we’ve accepted them. Even the way we celebrate holidays has changed.

I’ve always enjoyed Christmas, and having children makes this time of year even more magical. In 2008, we were excited to celebrate Matthias’ first Christmas, along with Magnus, who was 2 at the time, and just starting to participate in all of the excitement of the season.

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Matthias was diagnosed with retinoblastoma, a childhood cancer of the eye, when he was an infant.

Matthias never took a pacifier. He had a wicked gag reflex, so we had to find other ways to soothe him. Music became his pacifier, and we relied on it heavily.

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