Childhood Cancer

Neuroblastoma

Neuroblastoma is a type of childhood cancer that most commonly originates in the adrenal glands, but can also develop in the nerve tissues in the neck, chest, abdomen or pelvis. It is the most common extracranial solid tumor cancer in childhood and the most common cancer infancy. Neuroblastoma is divided into three risk categories: low, intermediate and high risk. 

Latest Neuroblastoma grants

Sharon Diskin, PhD, Principal Investigator
The Children's Hospital of Philadelphia
Innovation Grants, Awarded 2017
Susan Cohn, MD & Chuan He PhD, Principal Investigator
University of Chicago
Innovation Grants, Awarded 2017
Sakshi Uppal, PhD, Principal Investigator
University of Chicago
Young Investigator Grants, Awarded 2017

Latest Neuroblastoma blog posts

May 15, 2017

by Trish Adkins, ALSF 

In 2000, 4-year-old Alexandra “Alex” Scott asked her parents to help host her first lemonade stand in her front yard. Alex had been battling neuroblastoma since just before her first birthday and wanted to do something to help other kids battling cancer feel better. Alex raised over $2,000 at her first stand and kicked off a legacy of lemonade stands and hope. 

Nine years later, 10-year-old Quinn Clarke was fighting his second battle with cancer. Like Alex, he asked his parents to help him do something to help other kids. Quinn wanted to hold a kickball game to raise money for research. More than 500 people came to support him and he inspired a movement! People everywhere, even in Australia, began to hold kickball games to support childhood cancer research. 

Now, these organizations started by two amazing childhood cancer heroes have come together to find cures for childhood cancer, one kick at a time! Kick-It, a national charitable athletic campaign for childhood cancer research has officially joined the Alex’s Lemonade Stand Foundation family. We chatted with Alex’s mom Liz Scott and Quinn’s mom Allison Clarke about this new amazing partnership. 

Both Alex and Quinn battled childhood cancer. Tell me about your children and their fight against cancer.
 
Liz:
Alex was a determined, courageous, confident and inspiring child with big dreams and big accomplishments. After her first surgery for neuroblastoma,  doctors told us it was doubtful Alex would ever walk again.  Just two weeks later, Alex slightly moved her leg at our request. I think that shows her determination was always there. Later, she became determined to hold lemonade stands and give the money to her hospital. And when those efforts took off, but her own health was failing, she became still more determined to raise $1 million dollars before her death—and she did it.

But Alex is more than just a girl who battled cancer. She is my daughter and a sister and a cousin and a niece and a granddaughter. She loved fashion and Junie B. Jones and her dog Shammy and her cat Herbert. Her favorite colors were blue and purple. We miss her every day.  

Allison: 
At 6-months-old, Quinn was diagnosed with neurofibromatosis type 1, a genetic disorder that causes tumors to grow along the nervous system. Most tumors are benign, but some can be cancer.  At 20-months-old, Quinn was diagnosed with rhabdomyosarcoma, a type of soft tissue cancer. He immediately underwent surgery to remove the tumor followed by a year of chemo and radiation. 

He was relatively healthy until age 10 when doctors found a large MPNST (malignant peripheral nerve sheath tumor) in his hip. Chemotherapy was not effective and doctors sent him home on hospice. We ended up at MD Anderson for proton radiation therapy and then surgery to remove the tumor and his hip. After surgery, Quinn started an experimental drug. Doctors don’t know if the drug has kept Quinn cancer free or if he is in the 3% of MPNST kids that survive. Quinn had a long recovery process learning to walk with only one hip – which then led to a curve in his spine and spinal fusion surgery. 

Quinn is now a 17-year-old high school junior. He also loves to ski, which he re-learned to do through an adaptive ski program. Despite physical limitations, he never complains, works hard and takes life as it comes! He continues to do well in school and is excited to go to college.

How did battling cancer change your family?

Allison:
It’s hard to quantify how cancer has changed our family. On the positive side, it has made us grateful for each day we have together and we don’t wait to take vacations and do fun things with the kids. Kick-It would not exist if we didn’t experience the world of childhood cancer and it has been personally fulfilling to help others. On the other hand, we all worry that Quinn’s cancer will return and sometimes those emotions can be difficult to manage. 

Liz:
It is hard to say how cancer changed our family because it has been a part of our lives since our family was very young. In addition to losing our daughter, there are many other things cancer took from our family-- worrying and some level of anxiety became a way of life for all of us, which shapes you as a person. On the other hand, we have seen firsthand what has been gained and the good that can come from something so tragic. Alex’s life and legacy are something our whole family is proud of and she gave us a way to continue to have her in our lives; we know how lucky we are in that regard.  

Liz, what about Quinn reminds you of Alex?

Liz:
Like Alex, Quinn was determined to help other kids which took an extraordinary level of leadership in that you have to look past your own pain and challenges to see that others are suffering also. Like Alex, he believed that his age was a not a barrier to making a difference and he created an easy way for people of any age to get involved and contribute to the fight against childhood cancer. 


Allison, what about Alex reminds you of Quinn?

Allison: 
I wish I had the opportunity to meet Alex! I think Alex and Quinn inspired others to get involved because of their belief that anything is possible. The optimism and innocence of kids fighting cancer are amazing. They both wanted to do something to help other kids with cancer and weren’t focused on their own situations. 

What makes the ALSF and Kick-It partnership, so great?

Allison:

We have deep admiration for Liz and Jay, both as the co-executive directors of ALSF and as people. We have been co-funding research with them for years and knew that they had the ability to take our Kick-it program to the next level. Working together, we can have an even bigger impact! 

Liz:
Kick-It and ALSF are such an amazing match. We are inspired by Allison and her husband Kip and just connect on so many levels as parents. We love their energy and how fun they are to be around but recognize how serious they are about making a difference for this cause. I think it is pretty clear why people have gravitated to their family to create the Kick-It movement. The atmosphere of a Kick-It kickball game is fun, positive and inspirational! It so much like an Alex’s Lemonade Stand.  And I think the Kick-It Champion program is such a smart way to leverage the dedication of student-athletes to their sport by turning their accomplishments into funds raised for childhood cancer research.

Curing childhood cancer can seem like an impossible goal at times, but Alex believed that if we all work together, “we can do it.” Today, I know that is true more than ever and could not be more honored to be work together with Allison, her team and everyone involved with Kick-It to reach that goal!   

Kick-It, formerly a program of Flashes of Hope, is a national charitable athletic campaign to raise money for much-needed childhood cancer research. Kick-It partnered with Alex’s Lemonade Stand Foundation (ALSF) this year in order to further the vision of a 10-year-old boy with cancer who wanted to help other kids like him. This partnership emerged from their similar beginnings as both charities were founded by children battling cancer. Kick-It encourages supporters to host charity kickball games in their communities. It also partners with student athletes through its Kick-It Champions program. Athletes dedicate their season’s performance to Kick-It and raise awareness and funds for research. Learn more and host your own Kick-It game here.

February 22, 2017

by Kelby Wright, a senior at Bozeman High School, Bozeman, Montana

December 4, 2000 was a terrible day for a particular family. Their toddler daughter was diagnosed with stage IV neuroblastoma. The cancer had already spread to various areas in her body. She was just 18-months-old. 

The tumor was noticeable in her left cheek. However, the parents of the child did not know that there was also a tumor in her right adrenal gland that would most likely result in having that organ removed.

She survived the round of cancer. But soon enough, about nine months after the treatment, her stage IV neuroblastoma returned in her jaw. Her parents, devastated once again, stayed with her through the harsh chemotherapy and radiation. Her mother was always feeling around in her jaw in order to check on the tumor. 

She was a happy little girl, minding her own business and playing with the hospital toys. She always had a smile on her face. The doctors had warned that she had a very low chance of surviving both the first and second time. Soon enough, the cancer in her jaw left for a second time. And then, as doctors predicted, it returned. 

That little girl was me, Kelby Wright.

When I was 3-years-old, I broke my arm after falling off a bike that was too big for me. My parents took me to the doctor, who discovered the third round of neuroblastoma. At the time, the side effects from chemotherapy were making me miserable. The neuroblastoma I was battling had an amplified gene, which gave me a slim chance of survival after my first relapse. Now I was on relapse number two. 

My parents decided to take me off chemotherapy, choosing radiation and pain management, so I could be happy for the rest of my life, instead of miserable. My parents and doctors did not expect me to live. 

But, as unexpected as it was, even without chemotherapy, I survived for a third time. 

You might think that was the end of it, but no, cancer returned for a fourth time. I was just 6-years-old and neuroblastoma was found in a lymph node under my arm. Once again, doctors gave me very little chance for survival.

But here I am, 12 years later and a senior in high school writing about neuroblastoma, fundraising for Alex’s Lemonade Stand Foundation for my senior project and full of hope for the future. 

Hope is not something to give up. 

My parents never gave up hope for me, even when they thought I might die. To give up hope is essentially to give up in general. With hope, one feels a sort of humble empowerment. You know you do not have control, but you can’t help feeling that things will eventually get better.

Hope makes life easier. Without it, we are helpless. We can’t function.

Kelby Wright is a senior at Bozeman High School in Bozeman, Montana. She is a four-time neuroblastoma survivor. Kelby graduates in June and aspires to teach art to children. This year, she put her graphic design skills to work and hosted a fundraising event selling greeting cards to support Alex’s Lemonade Stand Foundation, raising over $2,000. 

February 13, 2017

Neuroblastoma, the type of cancer our founder Alex Scott battled, is the most-common extra-cranial solid tumor in childhood. Alex’s Lemonade Stand Foundation (ALSF) has helped power research that is getting us closer to cures every day. Researchers like Dr. John Maris from the Children’s Hospital of Philadelphia (CHOP) and Dr. Katherine Matthay from the University of California San Francisco School of Medicine, who sit on the ALSF Scientific Advisory Board, are working to study what makes neuroblastoma tick — to find its Achilles heel and then go after it. 

“Your child has neuroblastoma.”

Thirty years ago, those four words came with dismal survival rates (only 10-30%). Thanks to intense research and scientific collaboration, long-term survival rates have increased to 50-60%  for children diagnosed over the age of 18 months.

However, survival rates do not tell the whole story. Stage of disease, age at diagnosis and several other factors can affect outcome. In addition, some current treatments can leave children with long-term side effects impacting their quality of life and the long-term health of survivors. 

There is still more work to be done. ALSF-funded researchers are working to better understand neuroblastoma and learn its true Achilles heel — the very thing that cause and power the disease, so doctors can stop it. 

Understanding Neuroblastoma
Neuroblastoma is the most common extra-cranial solid tumor childhood. The disease arises in the peripheral sympathetic nervous system — the part of the nervous system outside of the central nervous system (the brain and spine) which  releases adrenaline. It is most commonly diagnosed in young children and infants; although it can arise in older children and adults. 

No two neuroblastoma stories are the same — just ask some of our neuroblastoma heroes. It can range from very benign to very malignant, with about half of the cases of neuroblastoma falling in the  malignant range. The disease spreads through the sympathetic nervous system leaving solid tumors in the abdomen, adrenal gland, the sympathetic nerves next to the spine and anywhere it can.

Ten years ago, the standard of care included surgery, chemotherapy, stem cell rescue, radiation and Accutane at the end of therapy to prevent relapse. Five years ago, the standard of care changed only by increasing the intensity of these treatments. Fast forward to today, and treatment is becoming more targeted with the inclusion of immunotherapy for high-risk neuroblastoma once the disease is in remission.

Immunotherapy brings the most promise for cures. Dr. John Maris, an oncologist from the Children’s Hospital of Philadelphia (CHOP) and a member of the ALSF Scientific Advisory Board says the current immunotherapy protocols prove it can work, but there is more to be done to improve effectiveness and decrease side effects, which can range from flu-like symptoms to severe pain throughout the body. 

Accelerating Towards Breakthrough Treatments

Research, says Dr. Maris is now focusing itself on finding the Achilles heel of neuroblastoma.

“We are working to figure out the genetics of why neuroblastoma happens. And then we ask the question: once it arises why do some become more malignant?” said Dr. Maris.

The current research builds on past discoveries and breakthroughs, such as the discovery of the MYCN amplification, which occurs in lower risk neuroblastoma. Dr. Katherine Matthay, from the University of California San Francisco School of Medicine and member of the ALSF Scientific Advisory Board, explained that this discovery has enabled children battling lower risk neuroblastoma to avoid intense treatments with severe side effects, while still realizing a 95-percent long term survival rate. This same discovery has also allowed doctors to intensify treatments for high-risk neuroblastoma. 

The discovery of ALK-gene driven neuroblastoma has also led to cures for some patients who are given ALK inhibitors

Dr. Matthay says efforts are ongoing in the U.S. and Europe to further improve immunotherapy with CAR-T cell, vaccine or natural cell therapy.  

Dr. Maris says that more hope lies in continuing to sequence the neuroblastoma genome, studying and finding all the genetic mutations and using this information to create personalized treatment approaches.

“We have several important new clues to personalized treatment approaches being tested in the clinic through some of the projects that ALSF funds,” said Dr. Maris

Since 2005, ALSF has funded over 690 multi-year research grants in the U.S. and Canada. Learn more about ALSF funded research, including the breakthrough ALK-gene therapy that saved Edie Geiger’s life here