Childhood Cancer

New St. Baldrick’s Researcher Aims to Give Kids With AT/RT Hope

by Erinn Jessop, St. Baldrick's Foundation
July 27, 2018
Dr. Rintaro Hashizume

New St. Baldrick’s researcher Dr. Rintaro Hashizume in the lab at Northwestern University.

For a child diagnosed with an atypical teratoid rhabdoid tumor or AT/RT, the options for treatment can be sparse and survival uncertain. This rare, aggressive tumor generally strikes very young kids and though research has progressed, many of these kids live less than a year after diagnosis.

As the father of a kindergartener, this breaks Dr. Rintaro Hashizume’s heart.

Recently awarded a St. Baldrick’s Research grant, Dr. Hashizume wants to change that reality for kids with AT/RT and their families.

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Families

Honored Kid Sully Beats Brain Cancer One Step at a Time

by Erinn Jessop, St. Baldrick's Foundation
May 22, 2018

Honored Kid Sully loves to bike, run and wrestle with his brothers like any 11-year-old boy. He even tried out skiing over spring break. You’d never expect that just a year and a half ago, Sully woke up from surgery unable to walk.

Honored Kid Sullivan before his diagnosis

Honored Kid Sully loves to bike, run, ride roller coasters and play with his brothers, Cashel and Finn. He wants to be a civil engineer when he grows up and dreams of designing the world’s best roller coasters.

It all started with back pain. It was innocuous at first. Hot baths would relieve Sully’s pain for a while, but it would come back with a vengeance. Finally, after many doctor’s visits, a lot of ibuprofen and no improvement, Sully’s parents, Dan and Jen, brought their son to the ER.

Hours later, the boy was in emergency brain surgery.

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Real-Life Stories

Childhood Cancer Survivors Shouldn’t Spend Their Lives Struggling

by Marianne Bergman
May 18, 2018

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.

Melissa with her nurse

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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Families

‘I Can Be the Voice for My Son’: Father Shaves his Head for the Eighth Time in Honor of his Son

by Erinn Jessop, St. Baldrick's Foundation
February 23, 2018

For Eric Haddad, head shaving isn’t just a one-time deal, because as the dad of a kid who fought brain cancer, he knows firsthand that the effects can last a lifetime. Next month, at the Rocky River event in Ohio, Eric will be shaving his head for the eighth time, while raising funds for research that he hopes will lead to better, safer treatments for kids with cancer.

Eric shaves for his son

During a past event, Eric shaves for his son, Shane.

When Shane Haddad was 4 years old, he started fighting childhood cancer. Eight years later, he hasn’t stopped fighting.

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Families

Meet Julia

by Avis Matsuda, St. Baldrick's Foundation
January 2, 2018
Julia

When you meet Julia, you know right away there’s something special about her. Perhaps it’s her bright smile or her exuberant joy and compassion for others. But this 11-year-old girl is super!

In fact, that’s her family’s favorite nickname for her — “Supergirl Julia” — given in honor of her courage and determined spirit during her cancer journey.

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Families

Researcher Works to Crack the DIPG Code with Help from McKenna Claire

by Erinn Jessop, St. Baldrick's Foundation
December 15, 2017
McKenna Claire was 7 years old when she was diagnosed with DIPG

McKenna Claire was 7 years old when she was diagnosed with a rare brain tumor called DIPG. The McKenna Claire Foundation was established in her memory and in 2013, St. Baldrick’s partnered with the McKenna Claire Foundation to fund DIPG research, like the work done by Dr. Rameen Beroukhim at the Dana Farber Cancer Institute.

Honored Kid McKenna Claire was bright, spirited, and loved soccer and gymnastics. McKenna was full of grace, joy and grit through it all, even as her childhood cancer progressed and she could no longer run across a soccer field, jump on a trampoline, talk or swallow. She died just six months after her diagnosis with a rare, fatal type of brain tumor called DIPG  – weeks before her birthday. She would have been 8 years old.

Learn more about McKenna and her cancer journey from her mom, Kristine >

Stories like this are why St. Baldrick’s researcher Dr. Rameen Beroukhim studies DIPG, otherwise known as diffuse intrinsic pontine glioma. In fact, McKenna’s photograph hangs in his lab.

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Facts

What Is Diffuse Intrinsic Pontine Glioma (DIPG)?

by Adam Green, M.D.
September 22, 2017

What is DIPG
Dr. Green is a St. Baldrick’s Scholar at the University of Colorado. He explains DIPG symptoms, treatment, and how research is helping kids with this type of childhood cancer.

What is DIPG?

DIPG stands for diffuse intrinsic pontine glioma. It is a type of high-grade glioma, a brain tumor that comes from cells called glia that surround, protect, and otherwise support the nerve cells in the brain.

DIPG is always found in the brainstem. This part of the brain controls many basic functions like breathing and swallowing, as well as muscles that help with speech and eye movements.

It is most common in elementary school-aged children, but it can affect children of any age.

Learn more about childhood cancer >

About 250 kids in the U.S. are diagnosed with DIPG each year.

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Advocacy

What I Learned From My Daughter’s DIPG Diagnosis

by Kristine Wetzel
September 21, 2017

When Kristine’s daughter McKenna was diagnosed with a rare pediatric brain tumor that no child has ever survived, she learned there was no known cure because of a lack of funding for research. You can help — get involved.

McKenna Claire

McKenna was diagnosed with DIPG, a deadly brain tumor, when she was 7.

In January 2011, our healthy, active, intelligent 7-year-old daughter, McKenna, came down with what we thought to be a stomach virus. After a week of doctor visits, seeing her left eye begin to stray and her mouth begin to droop, we insisted on having a CT scan.

Childhood cancer was never even a consideration in our minds before that scan, but less than 24 hours and one MRI later, we found ourselves surrounded by doctors at the nurses’ station in the PICU waiting to hear the diagnosis.

It was in the midst of that chaos that we were told our daughter had diffuse intrinsic pontine glioma, or DIPG, an extremely rare pediatric brain tumor that typically strikes between the ages of 5 and 7, infiltrates the brain stem, and has a 0% survival rate.

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Research

Meet the St. Baldrick’s Innovation Award Winners

by Erinn Jessop, St. Baldrick's Foundation
August 11, 2017

What do researchers Dr. Alex Huang and Dr. Carl Allen have in common? Passion, curiosity, drive, brilliant ideas, a desire to help kids — the list goes on! And now there’s something else. They are both recipients of the first St. Baldrick’s Innovation Award. What do they want to do with this unique grant? Read on to find out.

Dr. Carl Allen and Dr. Alex Huang

Dr. Carl Allen (left) is an associate professor at Texas Children’s Cancer Center and one of the investigators involved in the North American Consortium for Histiocytosis (NACHO), which received a St. Baldrick’s Consortium Grant. St. Baldrick’s researcher Dr. Alex Huang (right) is a professor of pediatrics at Case Western Reserve University School of Medicine and a 10-time shavee with St. Baldrick’s.

St. Baldrick’s researchers Dr. Alex Huang and Dr. Carl Allen work on different projects, in different labs about 1,300 miles away from each other.

Dr. Huang primarily studies how immunotherapy can help kids with cancer, while Dr. Allen studies Langerhans Cell Histiocytosis or LCH, which is caused by out-of-control immature white blood cells. The disorder can cause inflammatory tumors, damage organs and even cause brain degeneration in some patients.

The two researchers may work in different areas on different projects, but since the start of their careers in medicine, they’ve shared a goal — to help sick kids get better. And now they have something else in common.

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Families

From the Balance Beam to the Barber’s Chair: Juliana’s Story

by Juliana Abraham
July 6, 2017

Whether on the mat or under the clippers, Honored Kid Juliana lives with passion — and a brain tumor will never take that away from her. Learn more about Juliana, her diagnosis and its impact, and why she shaved her head for kids like her.

Juliana doing gymnastics

Juliana competes at a gymnastics championship before her diagnosis.

Growing up, I was active and always full of energy. To fuel my need for excitement, my parents enrolled me in gymnastics. I soon discovered that gymnastics was my calling. After winning many state titles and high-level regional and national titles, I was on my way to becoming a USA Gymnastics Elite gymnast.

In May of 2015, I started having difficulties with my vision and balance.

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