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.
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.
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.
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.
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.
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.
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.
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.
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 was diagnosed with DIPG, a deadly brain tumor, when she was 7.
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.
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 (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.
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 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.
When St. Baldrick’s Fellow Dr. Adam Green learned about high-grade gliomas and met kids diagnosed with the brain tumors, he knew he had to help. And today he’s doing just that. Read on for more about Dr. Green, his exciting research, and how St. Baldrick’s helped him make it happen.
Dr. Adam Green in his lab at the University of Colorado with his lab members, from left to right: Rakeb Lemma, Dr. Green, John DeSisto and Patrick Flannery. Dr. Green’s research is funded in part by the Luke’s Army Pediatric Cancer Research Fund, a St. Baldrick’s Hero Fund created in memory of Luke Ungerer, a little boy who died of brain cancer.
Dr. Adam Green distinctly remembers the first time he gave a family the news that their child had an aggressive, fatal brain tumor. It was an experience that’s hard to forget.
Tracey Blackmore lost her son Brooks to brain cancer last year. In this guest blog, she describes how she both grieves for her little boy and gives back in his honor.
Tracey and Brooks laugh together.
There are so many different ways to deal with the grief of losing a child. There is no “right” way, but I knew what MY way had to be. I knew I had to wake up everyday and choose happiness in my son’s honor.
Brooks Blackmore was only 5 years old when he was diagnosed with two stage 4 brain tumors on June 13, 2015. We were told that they were inoperable, there was no cure and radiation was the only hope to prolong his life.
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