Real-Life Stories

What Is It Like to Be a Childhood Cancer Survivor? It’s Complicated.

by Zoe Enderle Wagner
June 25, 2018

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.

Zoe Wagner

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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Childhood Cancer

AML and St. Baldrick’s: A Continuing Story of Progress

by E. Anders Kolb, M.D. and Becky Chapman Weaver
April 14, 2018
AML and St. Baldrick's

With its recent commitment of $500,000 for the Target Pediatric AML initiative, the St. Baldrick’s Foundation adds another chapter to its long story of support for innovative and impactful research in childhood acute myeloid leukemia (AML).

While great progress has been made over many decades to help children survive the most common childhood cancer – acute lymphoblastic leukemia (ALL) – the same has not held true for children with AML.

St. Baldrick’s is helping change that.

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Real-Life Stories

‘The Miracle Kid’: The Story of Brittany Ross

by Erinn Jessop, St. Baldrick's Foundation
January 30, 2018
Brittany smiles during her wedding day

A childhood cancer survivor, Brittany Ross smiles during her long-awaited wedding day to her fiance, Patrick.

When Honored Kid Brittany Ross was told that she’d be lucky to live another three weeks, she didn’t react with sadness. She didn’t bury her head under her hospital bed blankets and cry or ask, ‘Why me?’

She was mad. She was fired up. She was determined to beat childhood cancer.

“They made it seem like I had no chance,” Brittany said of her diagnosis in December 2000. “At this time, I was like, ‘Look, I’m 15 years old. I haven’t really started living my life yet.’”

And she had a come-back that any teenager would be proud of.

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Research

Researchers Engineer a Promising Treatment for AML

by Erinn Jessop, St. Baldrick's Foundation
August 18, 2017

Acute myeloid leukemia (AML) is tough for doctors to treat. Because of that, the intense treatment needed to beat AML can be especially tough on the kids who have it. St. Baldrick’s researcher Dr. Anders Kolb wants to change that with targeted therapy. To do this, he’s getting a little help from his friends – including St. Baldrick’s.

Dr. Anders Kolb

Dr. Anders Kolb is one of St. Baldrick’s newest grantees.

Many kids in treatment for AML are getting hammered by strong treatments, like intense chemotherapy and bone marrow transplants. These therapies can save their lives, but often come with a steep cost as they grow up.

“There’s only so much we can do with the tools in our toolbox,” said Dr. Anders Kolb, who works at the Alfred I. Dupont Hospital for Children in Delaware. “We have five different hammers and they’re all really big hammers. We don’t have anything that is more subtle and more targeted.”

Not yet, at least.

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Research

Researchers Team up to Tackle Ethnic Disparity in Childhood Cancers

by Erinn Jessop, St. Baldrick's Foundation
August 7, 2017

What do childhood cancer researchers do when they see a problem? They band together to solve it. Read on to learn why institutions across Texas and California are joining forces and what they’re doing to help kids with cancer.

Dr. Philip Lupo

Dr. Philip Lupo is the principal investigator of the REDIAL Consortium, as well as an Associate Professor of Pediatrics at Baylor College of Medicine and Co-Director of the Epidemiology Program at Texas Children’s Cancer and Hematology Centers.

Years ago, St. Baldrick’s researcher Dr. Philip Lupo and his colleagues at Houston’s Baylor College of Medicine noticed a problem.

According to studies they read and stories Dr. Lupo heard from clinicians, kids who are Hispanic don’t do as well on treatment as other kids with acute leukemias. They are more likely to experience complications and are at higher risk of relapse than kids of other backgrounds.

But scientists don’t know exactly why that is.

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Survivors

A Survivor Speaks: ‘Don’t Find My Silver Linings For Me’

by Brooke Vittimberga
June 27, 2017

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…

Collage of Brooke

(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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Families

How Immunotherapy Saved Phineas [VIDEO]

by Erinn Jessop, St. Baldrick's Foundation
June 12, 2017

“Our son would not be with us today if it weren’t for St. Baldrick’s,” says Phineas’ dad, Carlos. Read on to see how research saved the little boy’s life.

VIDEO: Phineas’ Story >

Phineas Sandi smiles as he looks into the distance

On a mountain bike ride with a friend, 9-year-old Phineas was sailing along when he decided to take a risk and pedal over a bridge not meant for bicycle traffic. He wiped out in a big way.

But without so much as a single tear, he picked himself up, dusted himself off, and got back on the bike.

Compared to what this boy had been through two years before, that was nothing.

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Facts

What Is Acute Promyelocytic Leukemia?

by Edward Allan R. Sison, M.D.
March 9, 2017
what is Ph+ALL

Dr. Edward Allan Sison, a former St. Baldrick’s Fellow, is a faculty member at Baylor College of Medicine and Texas Children’s Cancer Center. He’s researching ways to make chemotherapy more effective in children with high-risk leukemias. He explains APL leukemia symptoms, treatment options, and how your support is moving research forward to help kids with this disease.

What is acute promyelocytic leukemia?

Leukemia is a cancer of the white blood cells. Acute promyelocytic leukemia (APL) comes from a type of white blood cells called promyelocytes.

Normal promyelocytes will grow up into white blood cells that fight off infection. In APL, the promyelocytes forget that they are supposed to grow up, and instead multiply at a very fast rate.

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Kids with Cancer

Meet Emily

by St. Baldrick's Foundation
January 5, 2017

Emily’s nickname as a camp counselor is “Sunshine,” and for good reason.

Diagnosed with acute promyelocytic leukemia in April 2016, Emily has kept a sunny attitude, despite a devastating diagnosis and a risky treatment plan.

2017 ambassador Emily

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Families

Honoring Sophie’s Spunky Spirit: A Memorial Fund for a Brighter Future

by Kallie Rossi
December 9, 2016

Honored Kid Sophie was just 3 months old when she was diagnosed with acute myeloid leukemia. When Sophie passed away 15 months later, her parents worried that she might be forgotten. They decided to honor Sophie’s memory by starting a memorial fund in her name, forever tying her to a cause they care deeply about: funding childhood cancer research.

Sophie in the fall

“The next place that I go
will be as peaceful and familiar
as a sleepy summer Sunday
and a sweet, untroubled mind.
And yet….it won’t be anything like any place I’ve ever been…
or seen…or dreamed of
in the place I leave behind.”
– “The Next Place” by Warren Hanson

Our first child, Sophie, was born in October 2013, and we were smitten with her the instant that she arrived.

A few months later, we noticed some odd bruise-like spots on Sophie’s torso and back. She had a runny nose for a couple of weeks but we didn’t think much of it, as everyone around us seemed to have a cold. Still, her “spots” concerned us so we brought her to the pediatrician.

The doctor shared our concerns and immediately sent us for blood work.

That night marked the first of many long stays at the hospital. A bone marrow biopsy revealed that our precious 3-month-old had acute myeloid leukemia (AML). Frightened and confused, we immediately began treatment.

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