Survivorship

Member Blog–When the National Drug Shortage Becomes Personal

December 5, 2024 CAC2

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By CAC2 Individual Member Jennifer Flowers Rhabdomyosarcoma became a common word in my family when I was three years old. By the time of diagnosis, the cancer had metastasized from the middle ear into the mastoid and eustachian tube. The University of Michigan’s C.S. Mott Children’s Hospital oncology team told my parents there was less than a three percent chance for me to live out the year. There was no definitive treatment protocol to defeat this rare form of cancer, and the survival rate was extremely low. Over the next two and a half years, I underwent surgeries, full head […]

CAC2 Member Blog–I Am Not A Miracle

June 2, 2024 CAC2

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By CAC2 Member Steven Giallourakis (The Steven G. Cancer Foundation) When someone has succeeded in life, we tend to think of them as successful. That they have earned the life they have. This might be partially true, hard work does pay off. Yet when we look at someone’s success we tend to gloss over all the luck. If we are talking about business success and the accumulation of wealth, being born in the United States of America is the best roll of the dice you can have. Being born to parents who love you, who support you and can help […]

A Tribute to Pediatric Cancer Caregivers: Honoring Heroes

February 16, 2024 Bethany Lieberman

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At the Coalition Against Childhood Cancer (CAC2), we extend our deepest gratitude to our community’s current and former caregivers. They embody compassion, resilience, and unwavering support for children, adolescents, young adults, and their families confronting a cancer diagnosis or the many complications that arise in survivorship. Caring for a child with cancer is a profound journey marked by a mix of emotions, challenges, and unyielding love. In the shadows of this harrowing ordeal stand the caregivers, often unsung heroes, beside young patients. On this National Caregivers Day, we acknowledge their pivotal roles and the extraordinary commitment they bring to the […]

Empowering Lives After Cancer: Introducing the Coalition Against Childhood Cancer’s CAC2 Survivorship Toolkit

January 12, 2024 CAC2

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In the continually evolving landscape of cancer care, the survivorship phase stands as a pivotal and unique challenge. Recognizing the significance of this critical juncture, the Coalition Against Childhood Cancer (CAC2) takes great pride in introducing its groundbreaking CAC2 Survivorship Toolkit. This meticulously curated online resource, boasting over 500 resources and publications, is designed to meet the diverse needs of childhood, adolescent, and young adult (AYA) cancer survivors and their families throughout the lifespan. Let’s delve into the distinguishing features that set the CAC2 Survivorship Toolkit apart as a vital support resource for individuals navigating the intricate journey of life […]

CAC2 Member Blog–Celebrating the Introduction of The Comprehensive Cancer Survivorship Act

December 19, 2022 CAC2

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By CAC2 Member Jess Kean, Children's Cancer Cause. The Comprehensive Cancer Survivorship Act was introduced in Congress on December 14, 2022. As the only childhood cancer organization involved in the drafting of this legislation, CAC2 Member Children's Cancer Cause is pleased to share the details of this bill with other CAC2 members in the hopes that the community will join us as we work toward its passage. The Comprehensive Cancer Survivorship Act addresses care planning, transition, navigation, reimbursement, quality, and so much more. It aims to address gaps in survivorship care and develop desperately needed standards to improve the overall [...] Read more

CAC2 Webinar–Hearing Loss from Cisplatin—Multiple Perspectives on the New FDA Preventative Treatment Option

December 1, 2022 CAC2

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Children who receive cisplatin as part of their cancer treatment are at risk for progressive and/or permanent hearing loss as a result of their treatment. This treatment effect can influence speech and language development, educational achievement, and social-emotional development. Recently, the FDA approved Pedmark, a Sodium Thiosulfate Injection created by Fennec Pharmaceuticals, as a treatment to help reduce the risk of ototoxicity associated with cisplatin. November’s CAC2 All-Member webinar provided key information about this important breakthrough in improving the quality of life for childhood cancer survivors who received cisplatin. Attendees learned about the importance of this specific drug approval, the [...] Read more

Survivorship Matters Blog: Pedmark – Improving Quality of Life for Childhood Cancer Survivors Preventing Chemo-Induced Hearing Loss

November 28, 2022 CAC2

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Survivorship Matters Blog By CAC2 Individual Member Mary Beth Collins “Your child has to be alive to experience side effects” It is heard by every parent of a child with a high-risk pediatric cancer when reviewing treatment protocol: your child must endure and survive all of the therapies first, before a parent can afford to be concerned about side effects. It’s a pragmatic priority; the focus is on keeping your child alive and achieving No Evidence of Disease, or ”NED” as commonly referenced. With the most challenging cancers, it is spoken with earnest and delicate honesty. Today, according to the […]

Survivorship Matters Blog: Recapturing the Dream

June 29, 2022 CAC2

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Survivorship Matters Blog By CAC2 Member Mary Beth Collins, PREP4Gold During his teens, my neuroblastoma survivor Joshua was struggling in every way a person could struggle. Puberty had brought on new long term side effects, and reinvigorated old ones that we thought were behind us. His chemo-induced hearing loss progressed from moderate-to-severe to profound, and his hearing aides became a trigger for his migraines. The combinations of cognitive impact, cluster migraines, and chemo-induced ADHD made education almost impossible. He was doing the best he could on home/hospital care with a teacher who visited the house a few times a week. […]

CAC2 Webinar–Better Together: Survivorship Connection

February 17, 2022 CAC2

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In our February CAC2 All-Member webinar CAC2 invited the Survivorship Interest Group's Better Together committee to discuss their Project Incubator initiative. Led by Mariah Forster Olson, and joined by committee members, Nick Giallourakis and Carolyn Breinich, this project would enable survivors and their parents, caregivers, and other family members, as well as nonprofit organizations and healthcare professionals, to be connected with available resources, programs, and services to assist in the lifelong journey of childhood cancer survivorship. This will be accomplished using our Better Together spreadsheet, as well as a unique, personalized approach. Read more

CAC2 Webinar–Multimorbidity from Surviving Childhood Cancer: Using Data to Improve Shared Decision-Making

December 13, 2021 CAC2

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In our December CAC2 All-Member webinar, Mariah Forster Olson (Neuroblastoma Children's Cancer Society) represented the CAC2 Survivorship Interest Group and hosted Nickhill Bhakta, MD, MPH. Dr. Bhakta. Dr. Bhakta discussed why the academic approach of thinking about one childhood cancer with one treatment exposure with one chronic condition is not a realistic way of solving long-term disease burden experienced by survivors. He discussed his work and efforts to engage survivorship groups to guide relevant and meaningful improvements in decision-making between all stakeholders involved in the healthcare of the survivor. Read more

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