Childhood Cancer

Brain Tumors

Brain tumors can be low-grade, which tend to grow more slowly, or high-grade with faster growth rates and more commonly spread into normal brain tissue. There are several rare types and sub-types of pediatric brain tumors.  

Latest Brain Tumors grants

Susann Brady-Kalnay, PhD & Efstathios Karathanasis, PhD, Principal Investigator
Case Western Reserve University
Innovation Grants, Awarded 2017
Ranjit S. Bindra, MD/PhD & Mark Saltzman, PhD , Principal Investigator
Yale School of Medicine
Innovation Grants, Awarded 2017
Bárbara Rivera, PhD, Principal Investigator
Jewish General Hospital
Young Investigator Grants, Awarded 2017

Latest Brain Tumors blog posts

June 16, 2017

by Larry Vincent

When I was a very young man, I made up my mind never to have children. I didn’t think I would be a very good father and my own father was absent for most of my life, so the notion of being a dad was informed by angst and ignorance.

Cut to me at age 27, gleefully welcoming my first child Lucas into the world. Two years later, my daughter Jordan joined us. Today, I am grateful for the blessing of my children. They are both young adults now, and I couldn’t be more proud of them, especially given my daughter’s long journey with brain cancer. Jordan has been fighting for more than 13 years. That forged an uncertain childhood for both my kids and for my family. In retrospect, I learned a lot about being a dad through the unique lens of our experience. The following are some of the lessons I value the most.

1. Laugh
As odd as it may sound, I believe laughter kept our family strong. It’s very hard to find humor when your child is sick, but the axiom of laughter being the best medicine is very true. 

While I was thinking about this article, I went back and looked through the 13 years of entries I have written on our blog, many of them relay moments in time that were truly funny. I was smiling re-reading them.

While I can’t say that my dad was my role model, there were others dads I admired growing up. The ones that shaped my perception on how to behave were the ones who didn’t take life too seriously—the ones who liked a good prank and knew how to have fun in ample proportion to their need to exact discipline. I think many parents who share this philosophy lose sight of it when their child gets sick.

2. Advocate
I suspect this is less about being a dad, and more about being the parent of a child fighting cancer. You have to be your child’s advocate. It’s rough because that sometimes means asking tough questions of doctors and nurses in an overworked healthcare system. This is a job that is often shared between parents. And there are plenty of moms out there who take on this role alone. 

I’m from the midwest, so it’s in my blood to be nice. But there were times when being a dad to a child with cancer meant being a pest and sometimes being demanding. I had to make decisions I wish I never had to make, but it was my job because it was best for my daughter. Fortunately, we were blessed with wonderful healthcare partners who encouraged me to keep on advocating.

3. Find an Outlet
You can’t do it alone, and you can’t do it constantly. What is “it?” It is being in the battle for your child’s life and journey to wellness. Sadly, most of us share a perception that dads have to be strong and stoic and tireless. The truth is that this journey will make you feel weak and emotional and exhausted. You have to hit pause now and then. You must find a channel to release all the anger and anxiety and fear. For me, it was writing. For others, it is exercise, video games, time with friends, travel, etc. To be the best dad to your child on this journey, you have to discover your own outlet.

4. Coach
Sometimes, I think I have served my family best by being the family coach. That means being a cheerleader when the rest of the gang is feeling down. It means reminding your cancer fighter of their strengths and accomplishments so that they stay in the game with all the energy they can muster. Sometimes, it’s getting people prepared for a tough road ahead. And sometimes, it means focusing on a family member who is not the one fighting cancer fighter.

My wife missed her calling. She should have been a doctor or a nurse. She has an amazing bedside manner and Wonder Woman strength. As dad-coach, my job is often to celebrate everything she does. To use a baseball analogy, if Jordan is our star slugger, then my wife, Jeanette, is certainly our pitching ace. She can go for innings and innings, but she often needs a coach who can visit the mound and help her shake off a jam. 

5. Grieve
Your child has lost their health, at least for now. That’s a terrible, awful feeling. We dads handle it in different ways, but too often we suppress that overwhelming feeling of loss. You have to grieve.

Shortly after Jordan was diagnosed, I started writing our blog. It was originally intended to keep family updated on her progress because it was too much to call and email everyone with updates. After a while, the blog became my place to grieve. I let the dark feelings pour out and then published them to whoever wanted to read. And people did start reading. People I’d never met. I will never forget a comment that was sent to me privately after one particularly sad post. It was a comment from another cancer-fighting dad. He advised me to cry. His follow-up comment was haunting and insightful. “That’s what showers were made for.” Whether you cry in the shower or sob in your living room, don’t be afraid to deal with your grief. There’s no shame in it.

6. Let Go
Finally, as the dad of a cancer fighter, you need to learn how to let go. As fathers, we often want to have a plan. We’re Clark W. Griswold with a master strategy for getting the family to Wally World. But cancer is not so easily navigated and things will happen you can never predict. Your mind wants to skip ahead to risks and probabilities, but they are not what your family needs. Your family needs you now, in the present, making the most of this very day because the days ahead are not promised.

As a writer and a business strategist, this lesson was hard for me to learn. I wanted to control so much. That, I thought, was what it meant to be a dad—to lead the family through command and control. Boy, was I wrong. I hope I have been a good father to my children and a good partner for my wife. If I have, it is because I learned long ago that I could be my best for them by enabling the moment—by loving unconditionally and embracing the love we enjoy every day we have together.

Larry Vincent is a writer and marketing executive who lives in Los Angeles. His daughter Jordan has been a “cancer slayer” since 2004. She is also a proud ALSF Hero Ambassador. Follow Jordan's story here. 

 

 

 

 

 

June 9, 2017

 

by Trish Adkins, ALSF

Every time you make a donation for a cup of Alex’s Lemonade, you are moving researchers closer to breakthroughs. Since our beginnings, Alex’s Lemonade Stand Foundation has been dedicated to funding innovative, cutting-edge childhood cancer research. With your support, we’ve funded over 690 research grants since 2005!

Here are five researchers that you are helping to make breakthroughs, one cup at a time:

1. Dr. Michelle Monje—Leading the way in DIPG research
The five-year survival rate is zero for children battling diffuse intrinsic pontine glioma (DIPG), a tumor in the brainstem. This is because DIPG cells intermingle with healthy brain cells in the brainstem making surgical removal impossible. As the cancer cells multiply, the healthy cells are unable to do their critical jobs of controlling breathing, heart rate and blood pressure.

Now, for the first time in many years, a researcher has made an incredible breakthrough that could mean hope for these children and their families. ALSF-funded researcher Dr. Michelle Monje, from Stanford University, discovered that an existing drug called panobinostat slowed the growth of DIPG cells in the lab. Dr. Monje hopes through highly controlled clinical trials and in combination with other drugs, panobinostat could provide true hope to children with DIPG. 

2. Dr. Rebecca Gardner—Innovating CAR T cell immunotherapy for relapsed leukemia
ALSF-funded Young Investigator Dr. Rebecca Gardner has used CAR T cell immunotherapy to help patients with relapsed Pre-B acute lymphoblastic leukemia (ALL) reach remission. The clinical trial used the patient's own T cells and genetically modified them to allow the T cells to recognize leukemia and eliminate the disease.

In the Phase I portion of this trial, 93% of patients reached remission. Phase II of the trial is now underway. Read more about Dr. Gardner’s research and CAR T cell immunotherapy in our 2017 Spring newsletter.

3. Dr. Anthony Faber—Targeting high-risk neuroblastoma
Dr. Anthony Faber, from Virginia Commonwealth University, is studying how an existing FDA-approved drug could be a breakthrough for children battling high-risk neuroblastoma.

The research, done by Dr. Faber and co-awardee Dr. Yael Mosse of The Children’s Hospital of Philadelphia, has led to the understanding that MYCN-amplified neuroblastomas (historically making up a group of neuroblastomas with the poorest survival rate) are remarkably sensitive to the FDA-approved drug, venetoclax. Venetoclax works by targeting a protein that is particularly important in MYCN-amplified neuroblastoma.

Together, these researchers demonstrated that this drug is even more effective in combination with other drugs, including Aurora A inhibitors which are being tested in patients currently. This work has set the stage for more upcoming venetoclax-based clinical trials.

4. Rita Secola, PhD, RN—Ending central line infections
Most children battling cancer have a surgically placed central venous catheter (CVC) or “central line” for the delivery of frequent treatments. The CVC is an alternative to an IV line and can minimize the number of needle pokes for children in therapy. Hospitals use the CVC to deliver medication and also for blood tests. While the CVC remains in place and can be used multiple times (compared to a traditional IV which is removed after one treatment), it also presents a risk of dangerous bloodstream infections in children who already have weakened immune systems. 

Tapping into her nearly 20 years of clinical experience with young patients and families, Rita SecolaPhD, PhD, RN, at The Children’s Hospital Los Angeles (CHLA), has been researching what protocols reduce bloodstream infections and what factors make infection more likely in children with a CVC. During her research, Secola and her team discovered that ongoing nurse education and compliance were most critical to reducing infection rates.

Her team worked to develop education modules, checklists and guidelines for the nursing staff. As a result, the CVC infection rates at her hospital remain below the national rate and in recent months have been reduced to zero.

5. Dr. Jean Mulcahy Levy—Using Nobel Prize award-winning science to attack brain tumors
In order to survive, all cells of the body are constantly recycling within themselves, taking proteins inside the cell, scooping them up, breaking the proteins down and releasing the energy back into the cell as new building blocks. All cells—even cancer cells— perform this process, called autophagy.

Jean Mulcahy Levy, MD, from the University of Colorado Denver, is studying how stopping this process can be an effective treatment for some types of brain tumors, bringing real hope to children battling cancer. Her research on autophagy is based on a discovery by the 2016 Nobel Prize winning scientist Yoshinori Ohsumi. Dr. Levy’s research discovered that in brain tumors with a BRAF mutation, inhibiting autophagy can stop the tumors from becoming treatment resistant, allowing chemotherapy to work and eliminate the disease.

This weekend, make it your goal to swing by a local lemonade stand to make a donation and help researchers get closer to breakthroughs! To make that goal easier—we have a handy lemonade stand finder right on our website! Simply type in your zip code and you will receive a list of local lemonade stands. If you don’t see one, maybe you could host one (It’s easy!)  or choose a stand and make an online donation!

 

May 25, 2017

by Trish Adkins

In order to survive, the cells of the body are constantly recycling within themselves, taking proteins inside the cell, scooping them up, breaking the proteins down and releasing the energy back into the cell as new building blocks. Every cell in the body performs this process, called autophagy. The word literally means “self-eating,” and in addition to giving cells an internal source of energy, autophagy also helps cells remain healthy by keeping invaders like bacteria, viruses or chemotherapy out. Cells that live in harsh environments—environments like the brain where cells have limited blood supply—are skilled at using autophagy to survive. 

Brain tumor cells are experts at autophagy and use the process to survive chemotherapy, becoming resistant to treatment, leaving doctors without effective tools to stop cell growth and leaving children and their families without hope for a cure.

Until now. 

Jean Mulcahy Levy, MD, an ALSF Young Investigator grant recipient, is studying how stopping autophagy can be an effective treatment for some types of brain tumors.

Autophagy: Key to Cell Survival 
Dr. Levy's research on autophagy is based on the discovery of the 2016 Nobel Prize winning scientist Yoshinori Ohsumi. Ohsumi first detected the process of autophagy in yeast. The process helps explain how human beings can survive in extreme situations, like starvation, and also how cancer cells can survive treatments that should work, but simply do not. 

Anytime cells become stressed out—whether by treatment or cell environment—they ramp up their recycling process to survive.  

Autophagy and the BRAF Mutation
Dr. Levy’s research discovered that brain tumors with a BRAF mutation inhibiting autophagy can stop the tumors from becoming treatment resistant, allowing chemotherapy to work and eliminate disease. 

The BRAF mutation is the most common genetic mutation found in human cancers and is found across a variety of low grade and some of the harder to treat high-grade brain tumors, such as high-grade glioblastoma.

Dr. Levy used chloroquine, a medicine originally created to treat malaria in the 1950s, to inhibit autophagy. Since it is already approved for patient use, the drug is safe and readily available.  In the treatment of malaria, chloroquine stopped the malaria parasite from living in the blood cells. In the treatment of brain cancer, Dr. Levy’s hope was that chloroquine would stop autophagy and overcome the resistance to chemotherapy, killing the brain cancer cells and bringing children closer to a cure. 

And it worked. 

In Dr. Levy’s lab tests and with three patients battling relapsed brain tumors with the BRAF mutation, chloroquine used in conjunction with chemotherapy and radiation resulted in positive clinical outcomes. The brain tumor cells became susceptible to chemotherapy protocols.

The next step for Dr. Levy’s research is a clinical trial, which will expand the number of patients treated and continue to prove the safety and efficacy of chloroquine for autophagy inhibition in patients with the BRAF mutation. 

“Identifying new treatment options like autophagy inhibition, allows us to treat patients who have exhausted treatment options,” says Dr. Levy. “It also provides another option for patients for whom newer immunotherapies have failed.”

Dr. Levy’s work, “Autophagy inhibition overcomes multiple mechanisms of resistance to BRAF inhibition in brain tumors,” was published in the January 17, 2017 issue of eLife.

Read more about Dr. Levy’s work here.