Childhood Cancer

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Ependymoma is the third most common type of childhood glioma, a type of brain and spine
tumor. Scientists believe ependymoma tumors develop from the ependymal cells, the cells that line the ventricles (fluid-filled spaces in the brain) and the central canal of the spinal cord. Ependymomas are graded on a scale of stage I to III and include several subtypes, such as myxopapillary ependymomas, subependymoma, regular ependymoma, anaplastic ependymoma and other variants. 

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Latest Ependymoma grants

Stephen Mack, PhD, Principal Investigator
Baylor College of Medicine
Young Investigator Grants, Awarded 2016
George Jallo, MD, Principal Investigator
The Johns Hopkins University School of Medicine
Innovation Grants, Awarded 2013
Linda Resar, MD & Richard Schlegel, MD, PhD, Principal Investigator
The Johns Hopkins University School of Medicine
Innovation Grants, Awarded 2015

Latest Ependymoma blog posts

May 1, 2017

by Trish Adkins, ALSF

When you meet 8-year-old Maddie Davis, you might notice the pink highlights in her hair, her adorable dimpled smile and her advanced vocabulary (she reads at the 9th-grade level).

If you look closer, you might notice the silvery scar that snakes down the back of her neck or the way her right leg turns in just a little when she walks.

And if you ask her where she spent last Valentine’s Day, you will find out what makes this little girl a warrior.

Maddie spent Valentine’s Day 2017 in surgery to remove a tumor from her spine, marking her third tumor resection in as many years. She returned to school, 8 days after spinal surgery.

“What’s the point of being discharged, if I cannot go to school,” she told her mother.

Maddie began her battle with ependymoma, the second most common type of brain and spinal cord tumor in children, when she was just 5-years-old. She had surgery to remove the tumor in the posterior fossa* of her brain and followed with proton radiation treatment. For two years, Maddie was cancer-free until a routine scan caught her first recurrence in early 2016. 

“We were devastated for the second time,” says Maddie’s mother, Melanie Davis. 

The tumor recurred in the original tumor bed. Again, Maddie had surgery and then joined an immunotherapy trial with Dr. Ted Johnson at the GRU Medical College of Georgia in Augusta, Georgia, 460 miles from her home in Virginia. 

But, then the pain started in Maddie’s hip. For months, Maddie complained of pain on and off. After several x-rays and visits with physical therapists and orthopedists, Melanie asked for a spine MRI to see if there was a tumor.

“I just had a feeling that Maddie’s hip pain was something more,” said Melanie.

And it was. Maddie had a tumor in her lower spine from L2 to L5, the five vertebrae that make up the lumbar spine. Now, Maddie is battling recurrent metastatic brain cancer. Her cancer has spread. 

This time around, Maddie’s treatment remains the same: surgery, radiation and continuing on the immunotherapy trial with Dr. Johnson. Dr. Johnson’s research has been funded by ALSF and continues to study the potential of immunotherapy, a highly precise treatment that aims to recruit the body’s immune system to attack cancer. For Maddie, this treatment has offered a high quality of life—despite the distance. Her treatment side effects have been minimal and all treatments are outpatient, allowing Maddie to stay in school and with her family.

Doctors, researchers and parents are dedicated to finding treatments that are effective, while allowing children do the normal things they love—return to school, spend time with their families, go to birthday parties and above all, be happy. 

“My hope is that with research, we will find a way to beat these cancers without beating kids down so much,” said Melanie.

May is Brain Tumor Awareness Month. Brain tumors are the most deadly form of cancer in children. All month-long, the ALSF blog will share stories on the forefront of pediatric brain tumor research. To learn more about ALSF-funded brain tumor research projects visit here

* The posterior fossa is located in the back of the brain and contains the cerebellum (which controls movement and balance) and the brainstem (which controls vital functions like blood pressure and breathing). 

September 15, 2016

Alex’s Million Mile is held every September to raise awareness about childhood cancer and to raise critical funds for childhood cancer research. There are thousands of participants—all around the world—and among the most dedicated are our childhood cancer hero families. Shannon and Jake Leonard, parents to Caleb, Xavier and Asher, log their miles in Kellyville, Australia, a Sydney suburb--a place that feels a million miles away from their hometown in Kansas. 

Their youngest son, Asher, was diagnosed with ependymoma, a tumor of the brain and spine, in October 2011 when he was just 2 years old. Asher passed away, at the age of 4 1/2 in July 2013. 

That year was also the start of Alex’s Million Mile and what would become the start of a family tradition for the Leonards and a new way forward in the fight against childhood cancer. Here is Shannon’s Alex’s Million Mile story:

The inaugural year for Alex’s Million Mile, September 2013, was just two months after Asher died. We were all reeling. The kids were back to school. Jake was back to work. I was left in the house, alone, with what felt like no purpose. I left my job the day Asher was diagnosed in October 2011, and had spent every day since taking care of him, researching treatments and doing everything in my power to give him happy, meaningful days. 

Participating in Alex's Million Mile that first year gave me a sense of purpose. I got up every day, put on my gym clothes and running shoes and hit the pavement. With every step I thought about Asher. I thought about all the years he'd miss living on this earth; all the steps he'd never run or walk; and all the firsts he'd miss. I pushed myself every day to run a little further, a little faster, because Asher couldn't.  

Our family joins Alex’s Million Mile each year for the same reasons, but I can say that every step I run and walk, doesn't carry the same weight it did 3 years ago. I smile and even laugh when I run; thinking about Asher and all the wonderfully funny, amazing and compassionate things he did. In his 4 1/2 years , Asher taught us how to live in the face of adversity. He never complained. He never asked why he had to go through such hell. He was a happy little boy, who loved knock-knock jokes, cooking, Star Wars, playing outside and his big bothers. He was always concerned about others and even on the hardest, darkest days, he was always asking how everyone else was doing, making sure we were all ok. 

Our family will always continue to do what we can—whether that be bringing awareness, seeking donations or gathering support—to  ensure that someday, no family has to watch their child and sibling suffer at the hands of cancer. We know that our hearts and Alex’s Lemonade Stand Foundation’s mission align. We will continue to support all of their efforts to further research and support families.

We moved to Australia in July 2016. To have this amazing experience of living in another country, experiencing a whole new part of the world and giving our boys the opportunity of a lifetime, was an easy decision. Our boys have such a deep appreciation for life, having lived through the death of their brother. In discussing the move with the boys, it was Caleb who looked at us one day and said "Mom, this is an easy decision. We've had to make the hardest, most awful decisions with Asher, and THIS is not a hard decision.”

The majority of our team members are from Kansas and Ohio, our "homes." Asher's Stormtroopers began within weeks of Asher's diagnosis, as my sisters wanted to make t-shirts to support Asher and our family. Our boys suggested the color yellow, like Asher's blanket, that was always in his hand, a pale yellow color, was named "yellow." Asher loved everything Star Wars, due to his brothers’ love of Star Wars, and the name and design was born. We've stuck with the shirts and team name, as we carry on in honor and memory of Asher.

You can read more about Asher’s story and Asher’s Stormtroopers here. 

March 21, 2016

“Oh, you’re Campbell’s sister.” This is what I would hear whenever I was being introduced to a new person at my school, or in my town, or at my dance studio, or at work, or anywhere that there was someone new. My youngest sister, Campbell, was diagnosed with cancer the summer before I went into sixth grade. She was three. I never thought that her diagnosis would still be impacting my life in major ways almost seven years later.

I am currently a high school senior and, like many others, I had to go through the whole college application process earlier this year. I thought I was prepared, but then I was asked how many siblings I have. Automatically I said two, but I hesitated. The summer before my junior year, my sister died after battling ependymoma, a cancer of the brain and spine, for five years and two days. It sucked enough having to deal with losing one of my sisters, but being asked how many siblings I have and their ages? Wow, low blow.

That same summer, I was set to attend the Alex’s Lemonade Stand Foundation Student Leadership Academy at Villanova University. I had just gotten back from a two week trip to France when I found out that my sister had been put on hospice. The following week was the academy, but, under the circumstances at home, I was lucky enough to have my acceptance deferred to the following year.

The summer before my senior year, I finally got to attend the ALSF Student Leadership Academy and I am glad to say that I had the time of my life. It has always been hard for me to put myself out there, but at a camp geared towards teenagers interested in helping kids with cancer? With my story? Talk about being an awkward person. Luckily, my roommate and I hit it off right away and I quickly made more friends after that. The kids at the Student Leadership Academy were from across the country, from Texas to New Hampshire, and were interested in different things from entrepreneurship to student government. Although we were all different in so many ways, we all had a connection that you couldn’t find anywhere else.

The Academy taught me how to be myself, to be a leader, and to not be afraid to tell MY story. Although the patients are super important, the siblings are just as important and play a crucial role in their brother or sister’s fight. Time and time again, I found myself telling my sister’s story when I was asked to share my story. But the Academy helped me find the strength that I didn’t know I had to tell my side of what I went through.

Both my sisters taught me how to love someone unconditionally, and that sisters are forever. After my sister died, someone once corrected me, when I said that I had two sisters. They told me that I only had one, but I turned right around and said “no, as much as you disagree with me, I will always have two sisters.” I may or may not have said a few things after that that weren’t as kind, but I’ll leave those out because that isn’t my point. My point is that once you have something that you love so much, even if it’s only for a short eight years, you will always have that something with you.

If you are looking to attend the ALSF Student Leadership Academy, I strongly encourage you to do so. Trust me when I say that you will find things about yourself that you never knew, and that you will make friends and connections you never thought you would have. 

Caitlin Hoyt is 18 years old and has two younger sisters, Caroline and Campbell. In the Fall, she will be a freshman at Elon University, studying dance science on a pre-physical therapy track. 

The 2016 ALSF Student Leadership Academy is open to rising high school juniors and seniors and will begin on Monday, July 25th and will last through Thursday, July 28th, 2016 at Villanova University. The program, lodging and meals are provided free of charge to accepted students (students must arrange their own transportation to Philadelphia).  Learn more here and apply now to join us!