Childhood Cancer

Editor’s Note: Brooke is an Ambassador and Honored Kid who just graduated from Stanford University. As Cancer Survivors Month continues on the St. Baldrick’s Blog, we’re letting her tell the story of how she got to this day in her own words.

On Thursday, September 24, 2015, my friends were finishing up their first week of junior year at Stanford. I was lying in a hospital bed, watching as my brother’s stem cells were infused into my body, replacing the bone marrow that had turned against me.

On Friday, September 25, my friends celebrated their first weekend back together at school. I had a grand mal seizure.

When I was diagnosed with acute myeloid leukemia at the end of my sophomore year of college, I knew that I was going to have a very different college experience from my peers. I had no idea how different it would be.

I had the impression that I would either die or I would live and return to my previous life. I had a high-risk form of leukemia that did not respond to my first round of chemotherapy, and at first it seemed that the death option was more likely.

But when I got into remission on a salvage round of chemotherapy and proceeded to my bone marrow transplant, I was hopeful that a return to “normal life” was possible.

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The Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act – the most comprehensive childhood cancer bill in history – was signed into law one year ago today!

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It was an inspirational story that was tough to miss: Tyler Trent, Purdue student and Boilermaker superfan, battling a cancer that would prove fatal, and doing so with grace, poise, and character that belied his 20 years. His story has been told during countless television pieces, and social media posts, and even a book. Behind the scenes, though, Tyler made a decision that could potentially mean life-saving treatment in years to come for others faced with aggressive cancers. He agreed to be treated by a team of professionals that would try a precision oncology approach, with genomics front and center, to test what could potentially work for others in the future. The medical team hoped to learn ways to minimize the long-term effects from a wide range of cancers for those who survive.

One member of the team that worked with Tyler, and got to know his family, too, was Dr. Jamie Renbarger, a six-time St. Baldrick’s Foundation shavee and Division Chief of hematology/oncology at Riley Hospital for Children at Indiana University Health. During her nearly twenty years as a pediatric cancer doctor and researcher, Dr. Renbarger has learned a few things about genomics, about targeted, precision therapies – like those tried with Tyler – and about how research can lead to unexpected discoveries.

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Editor’s Note: We’re delighted to give the floor to Rebekah, who is our guest blogger and a leader of the 46 Mommas. In this blog post, she shares what she has learned about helping kids with cancer, and keeping her own sisterhood strong.

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“Same old, same old … doesn’t count.” Bob Arceci didn’t think that old methods were going to tackle pediatric cancers. As you can hear him talk about in this video, he was looking for new ideas, for thinking that wasn’t just “out of the box,” but never really in the box in the first place.

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It’s a lofty goal that’s right below the St. Baldrick’s logo for all to see: Conquer Childhood Cancers. And it’s a goal that takes a multi-faceted approach, a robust network of hospitals and researchers, and labs with professionals from throughout the age and experience spectrum.

As we learned recently when we interviewed Dr. Jeff Lipton, there’s real value in building a “pipeline” of researchers; and one way this pipeline grows is by funding the training of new researchers at hospitals and research organizations throughout North America.

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The Alliance for Childhood Cancer Action Days in Washington, D.C., is an opportunity for members of the childhood cancer community – from kids and their families to health care professionals and volunteers – to advocate for childhood cancer issues before Congress.

St. Baldrick’s Honored Kid, Scott, a 10-year-old whose cancer is in remission, attended Action Days with his mom Nancy and has provided us with the following report on his experiences in Washington.

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Dr. Jeffrey Lipton claims that the St. Baldrick’s Foundation doesn’t receive all the credit it deserves for developing a pipeline of young cancer researchers.

“Without the Foundation, many of today’s experts would never have embarked on basic, translational or clinical research on pediatric cancers,” he said. But, you could just as easily argue that St. Baldrick’s wouldn’t be where it is today without Dr. Lipton’s efforts.

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Brain tumors in children can sound especially daunting – but some brain tumors can be malignant and not especially life-threatening. Therefore, getting an accurate diagnosis is key, and Dr. James Olson of Seattle Children’s Hospital is working on more accurately diagnosing and treating brain cancers in children.

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It might seem that Department of Defense technology that’s used to detect explosives might not have any use in diagnosing childhood cancers. But, if you ask St. Baldrick’s Foundation “Rockstar Researcher” Dr. Bruce Shiramizu, this technology has real potential to help patients, parents, caregivers, and the cancer community.

It’s why this Hawaii-based doctor, who has worked on the mainland at the University of California San Francisco and at the National Institutes of Health, is so passionate about his research work and what it might be able to do for children throughout the world. This veteran researcher has shaved his head multiple times for St. Baldrick’s – that’s one definition of a “Rockstar Researcher” – and his body of work speaks volumes.

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