Cookies for Kids’ Cancer Blog

New Clinical Trial Gives Hope to Children Battling Cancer: Aidan’s Story

Filed under: childhood cancer research,kids fighting cancer — Tags: , — The Good Cookies @ 11:04 am September 12, 2017

Michele Brown courageously shares her son’s story and his fight with neuroblastoma.

March 17, 2010 was the last day of before. Before Cancer. Before our new normal.

We had piggybacked our boys from their beds to breakfast. This was our fun way of getting them up early and off to school. Like usual, we flopped Aidan onto the couch, but this day he cried out in pain and told us that his “weak leg” hurt.

After two months of numerous visits to the pediatrician, orthopedist, rheumatologist, infectious disease doctor and emergency room, we heard the words that marked time. There was then and now, before and after. Our beautiful boy was diagnosed with Stage IV Neuroblastoma just days before his fifth birthday. The large tumor wrapped around his left kidney had already metastasized to the bones in his weak leg and three other spots before we knew anything was wrong.  When Aidan relapsed in June of 2014 we had finally exhaled. Aidan had just finished a great year in the 2nd grade. He was playing soccer and basketball. The light in his eyes, his energy, and his auburn hair were back. The first time around we knew something was wrong.  He had fevers and pain. This time we were blindsided. We believed we had beaten the odds, but instead we ended up in an even worse statistical cesspool.

The first time, Aidan endured three surgeries, seven rounds of chemotherapy, a stem-cell transplant, five rounds of immunotherapy, 12 proton radiation treatments and about 150 days in the hospital. It was hell. No words describe the pain, damage done, innocence lost, the changes in the family and sibling dynamics, the weight of every decision, the suffering, or the fear. Yet, there was a plan for treatment and cautious optimism from the medical community. So we persevered. We learned how to let others support us. We questioned but clung to our faith. We cried every day but remained determined to learn life’s lessons: make each day count, find joy and something to be grateful for, take it one day at a time. We struggled to hold onto a job, deal with the insurance companies, understand medical jargon and drug side effects, take care of big-brother Alex, help Aidan through horrific treatments, and keep ourselves from falling into a pit of despair.

The second time there was no protocol to follow. Our local children’s hospital and our compassionate doctor had nothing to offer but more radiation and a clinical trial that involved chemo treatments. They were scheduled one week on, followed by two weeks off, until they “stopped working.” There was little hope to be found anywhere. Our schedule became the continuous loop of: our family being torn apart, Aidan being sick in the hospital from treatment, coming home and helping Aidan recover, having one good week, and then back to the hospital. We were devastated. Then, we read an article about a vaccine getting orphan drug status. The Trivalent B Vaccine was being offered at Memorial Sloan Kettering Cancer Center and this promising new drug was funded by Cookies for Kids’ Cancer.

We flew back and forth to NYC to get Aidan the series of seven vaccines. It was a hassle to get to NY but we returned home thankful to have our family together and able to sleep in our own beds, under one roof, on most nights. Aidan had a sore leg and welt at the injection site but he wasn’t nauseous and not eating. After each treatment, his immune system grew stronger, instead of weaker. Best of all, we had hope. Children with cancer, their parents, their big-brothers and everyone around them need hope. New cancer drugs mean hope — hope for a longer life, a better quality of life or maybe even a cure.

We know first-hand the difference new research and new drugs can make. We live with a miracle. Aidan recently celebrated his 12th birthday. His scans remain clear. Once again, he is happy and healthy, playing basketball and soccer. He earned straight A’s in school and he plays the violin. He is amazing. We can’t let our minds think about what our lives would look like if Cookies for Kids’ Cancer hadn’t funded that vaccine. We pray we never need the future drugs they will fund.

We try our best to fight back our fears, live in the moment, and recognize that we have been given a gift and that the future is uncertain for everyone. We will spend our lives grateful to Gretchen Holt-Witt and the staff who work tirelessly to help bring new treatment options to the most innocent victims. Thank you to everyone who supports Cookies for Kids’ Cancer and their research.

If you have ever wondered how you can help or what you can do, please give to Cookies for Kids’ Cancer. You can give more families, like ours, much-needed hope.

From Good Cookie to Clinical Trial

How Your Support Has Helped Develop A New Treatment For Pediatric Cancer

Today is a good day. Today we are filled with hope. Because today marks the launch of a clinical trial for a new, less toxic treatment for children battling cancer. Days like these are so meaningful because it means that we are doing what we have set out to do, which is to empower and inspire Good Cookies all across the world to join us in raising funds and awareness for pediatric cancer research! We are very excited to announce the news of this phase 1 clinical trial with you today and to share more details of this important story over the next few months.

We sharing lots of information on our social media, through our email newsletter, and we will be posting a series of blog posts written by families with children who have battled or are still battling neuroblastoma, the deadly form of cancer that this new drug is designed to treat. We hope you stay tuned for these personal stories and are inspired to be the best Good Cookie you can be!

One Doctor, Years of Work, and HOPE at the Launch of a Clinical Trial.

It all starts with Yael P. Mossé, MD and her brilliant work at Children’s Hospital of Philadelphia (CHOP). Dr. Mossé is an attending physician at CHOP’s Cancer Center with a special interest in neuroblastoma. Her work led to a grant submission to Cookies for Kids’ Cancer in 2015, and approval by our Medical Advisory Board. It was the first grant Mossé received for this stage of pre-clinical work on the promising new drug, called Lorlatinib.

Six months after receiving the first grant from Cookies for Kids’ Cancer, Dr. Mossé’s results were moving ahead so rapidly that the NANT Consortium [New Approaches to Neuroblastoma Therapy] and the drug’s manufacturer, Pfizer, all began to merge interests to move toward the clinical trial phase. Alongside these developments came another $200,000 grant from Cookies for Kids’ Cancer to insure the testing and data were of the highest quality in hopes of benefitting children with neuroblastoma.The work has led to the launch of the trial’s enrollment process at several sites including Children’s Hospital of Philadelphia, and will become available at all 16 centers over the next several weeks.

The phase 1 study is enrolling patients at the following 16 centers:

UCSF School of Medicine    

Children’s Hospital Los Angeles

Cincinnati Children’s Hospital

Lucile Packard Children’s Hospital

Children’s Hospital Colorado

Children’s Hospital of Philadelphia

C. S. Mott Children’s Hospital

Cook Children’s Healthcare System

Hospital for Sick Children, Toronto, Canada  

Seattle Children’s Hospital      

Memorial Sloan-Kettering Cancer Center

Children’s Healthcare of Atlanta   

University of Chicago, Comer Children’s Hospital

Royal Marsden Hospital, London, England

Institut Curie, Paris, France

Children’s Hospital Boston, Dana-Farber Cancer Institute

There are so many Tough Cookies out there who could benefit from a new treatment such as this one. And although we cannot know if this first trial will lead to a second, or to a cure, we believe that this trial will serve as a source of hope for the children and families out there who are in the fight of their lives.

With your help, Cookies for Kid’s Cancer will continue funding this type of research and working alongside brilliant doctors like Dr. Mossé and respected research institutes like Children’s Hospital of Philadelphia, to develop new treatments for precious children who are battling this disease.

We will be sharing more details about this clinical trial, the story behind of how it all came together, and ways that you can help continue to fund these developments in pediatric cancer research across our social media channels so be sure to stay tuned! Facebook, Twitter, Instagram

Cookies Grants $700,000 to Top Pediatric Cancer Centers

Cookies for Kids’ Cancer announced $700,000 in grants to support the development of new treatments in the fight against pediatric cancer. The funds will go to five institutions across the country for clinical research to accelerate new therapies to the clinic in the form trials that show great promise in the treatment of pediatric cancers.

The current grant cycle released awards in four areas – Acute Lymphatic Leukemia, Langerhans Cell Histiocytis, brain tumors, and soft tissue tumors including Neuroblastoma, one of the deadliest forms of pediatric cancer which accounts for 15 percent of all pediatric cancer deaths. Awards go to five research centers: Texas Children’s Cancer Center, Children’s Hospital of Philadelphia, Memorial Sloan-Kettering Cancer Center, Dana Farber Cancer Institute, and St. Jude Children’s Research Hospital. Today pediatric cancer is the number one disease killer of children under the age of 18 in the U.S. Cookies for Kids’ Cancer’s grants are awarded through the foundation’s Medical Advisory Board which is comprised of top researchers in the field of pediatric cancer from the nation’s leading pediatric cancer research institutions.

“Philanthropy plays a critical and essential role in the ongoing battle against childhood cancer,” commented Dr. John Maris of Children’s Hospital of Philadelphia and a member of the Cookies for Kids’ Cancer Medical Advisory Board. “Philanthropic investment in key pediatric cancer research programs will provide the essential catalyst to make more discoveries and move them to improving cure rates as quickly as possible, and a partnership between researchers and ‘investors’ in this mission will be critical to expand in order to make a difference now.”

“Our focus is on funding the most promising clinical trials,” Cookies for Kids’ Cancer Founder Gretchen Witt said. “We have always believed that if people learn about the need for funding, they will support the cause. These grants represent the support of thousands of people who have held bake sales, bought cookies and believed, like we do, that we can and will make a difference in the lives of children battling cancer. We are very excited about the possibilities these therapies hold and look forward to seeing them move from the lab to the clinic as quickly as possible.”

These grants represent the first of two grant cycles for 2011. The foundation plans to award additional grants in September in recognition of Pediatric Cancer Awareness Month.

Cookies for Kids’ Cancer was founded in 2008 by Gretchen and Larry Witt who were inspired by their son Liam’s courageous battle against pediatric cancer. After learning about the lack of effective therapies, the Witts pledged to support the development of new and less toxic treatments by giving people a simple way to get involved. Through Cookies for Kids’ Cancer, individuals, communities and businesses are inspired to join the fight by hosting bake sales and other events to get involved in pediatric cancer research. Tragically, the Witts’ son Liam came to the end of his four year battle with cancer earlier this year.