leukemia

Dr. Michael Pulsipher knows that for a kid with cancer, survival often comes down to just a few bad cells amidst an ocean of healthy ones. That’s why he’s studying a method to better screen kids with acute lymphoblastic leukemia, or ALL, for those few bad cells that can be left after treatment.

Most ALL relapses are caused by just a few cancer cells that remain in the body after treatment. Those few cells can fly under the radar of current screening methods, only showing themselves once they’ve multiplied enough.

But what if we had a better way to detect those few sneaky cancer cells before they’ve had a chance to grow?

Dr. Pulsipher, a St. Baldrick’s researcher at Children’s Hospital Los Angeles, may have found just that.

This highly sensitive method is called next-generation sequencing, and what Dr. Pulsipher discovered is extraordinary.

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Scott was diagnosed with acute lymphoblastic leukemia at the age of 3. After three and a half years of treatment, he took to the Hill in September to get the Childhood Cancer STAR Act on the minds of Congress. Now he’s back to remind everyone of how much work there is left to be done. Read his moving speech below and see how you can make an impact for kids like Scott everywhere.

Good morning! My name is Scott Lenfestey and I am 7 years old. I live in the Raleigh, North Carolina area and just completed three and a half years of treatment for acute lymphoblastic leukemia.

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Four years ago, Nancy watched her 3-year-old son, Scott, go from a healthy boy to a child with cancer. This year, she watched him stand before Congress and deliver a speech on the importance of childhood cancer research and the STAR Act. She relives the experience below.

If someone had told me back when Scott was first diagnosed that he’d be able to complete three and a half years of treatment, overcome multiple side effects from chemo, and go on to become a happy, vibrant kid who would speak before Congress, I wouldn’t have believed them. It was such a long road.

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Joey was an energetic, mischievous kid who loved Legos and Spongebob. After he passed away from childhood cancer, his family attended their local St. Baldrick’s event to fight for a cure in his honor. Read on to learn how the event has come to be a cherished family tradition.

Joey’s childhood cancer story is similar to others. He was a happy, active preschooler with a mischievous side and a love of Legos and SpongeBob. Everything was pretty normal until a few months before his fifth birthday when he developed flu-like symptoms that wouldn’t go away.

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Since Honored Kid Addison’s diagnosis five years ago, raising awareness of childhood cancer and helping others has become a family enterprise. Read on to see how the Kleinhans family is making an impact.

It all started on Easter in 2010, after the Kleinhans family arrived home from church. They pulled into their driveway and opened the front door to find that the Easter bunny had visited. Addison’s mom, Sarah, remembered the scene.

“There’s candy and eggs everywhere and he sat down, right on the ground, right outside the car, and he said, ‘My legs are too tired. I can’t get them. Can sis get them for me?’” she recalled. “I said to my husband, ‘This is a problem.’”

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For years, Rabbi Vered Harris and Imam Imad Enchassi have stood together in support of peace, love and respect. Now, they’re working together to help kids with cancer. Last week, as Rabbi Harris fundraised ahead of her shave for St. Baldrick’s, the imam had a surprise for her. Read on to find out more!

Rabbi Vered Harris was dumbstruck as she read a text from Imam Imad Enchassi. She had expected the imam to donate to her shave for St. Baldrick’s, but not like this.

Without telling her, Imam Enchassi had spread the word about her shave to members of the Muslim community of Oklahoma City. They rallied to the childhood cancer cause, raising $3,600 for the rabbi’s shave in just a day and a half — filling her entire fundraising goal in one fell swoop.

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Last month, Taylor Wiebers took the stage for the Miss America competition, prepared to tell the judges about her passion for St. Baldrick’s. But Miss Iowa doesn’t just walk the walk — four years earlier, Taylor had shaved off her long, blond curls and raised $3,000 for childhood cancer research. Taylor opens up about her inspiration for shaving, the lessons she’s learned, and what she’s doing now that the pageant’s over. (Hint: It still involves kids with cancer.)

My story starts in December of 2010 when a local St. Baldrick’s committee member asked me to volunteer at the first annual shave event in Dewitt, Iowa. Without hesitation I knew in my heart what I should do. I told her I would like to shave my head.

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When Luke was fighting childhood cancer for the second time, the chemo weakened his immune system so much that he contracted bacterial meningitis. “That was the start of the most painful five months of our lives,” his dad, Ryan, writes. Luke’s still in the hospital, but he’s getting stronger every day. Ryan tells his story.

What the word “cancer” represents to a family, especially the words “childhood cancer,” is impossible to fully describe. There is panic, shock, fear and anger all rolled into one big mess of emotion.

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Earlier this year, Matt posted the following blog on his website. He was shocked by the response. “The comments and emails came flooding in,” Matt said. Read about what it’s really like to be a cancer dad, and check out Matt’s follow-up post about what he’s learned from his fellow cancer dads since then.

As a veteran childhood cancer parent, I have seen countless fathers rise to the challenge of being cancer dads, whether holding a vomit bucket while their child empties their insides, squeezing into a tiny bed with their child overnight in the hospital, or delivering countless meds through syringes. I have been witness to ordinary dads becoming extraordinary, just as I have seen ordinary moms do the same.

But judging by the articles and comments you see out there, you’d never know that many dads play an active role in their child’s cancer fight. From the numerous “Things Only Cancer Moms Know” articles that have nothing mom-specific listed, to the term “momcologist,” the overwhelming majority of articles on cancer parents only focus on the mothers.

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Today Abby turns 9, and for the second year in a row, she’s celebrating her birthday in the hospital. Her mom, Patty, reflects on the past year and all the challenges their family has weathered together, from relapse to transplant to today.

What a year it has been.

Looking back at where we have been, the many states of mind and motions we have experienced … it’s enough to make my head spin.

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