All posts tagged: Survivorship

CAC2 Member Blog–Taking Childhood Cancer Advocacy on the Road: Childhood Cancer License Plates

October 1, 2021
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By CAC2 Member Mary Beth Collins, PREP4Gold For the entire month of September the world hears a great deal from the childhood cancer community, feverishly raising awareness, advocating for programs & funding, and sharing stories about treatment, survivorship, and bereavement. Social media posts are in abundance, medical experts and advocates are interviewed, and researchers publish papers with the latest data. Each day of the month, there is a great deal provided about childhood cancer as Childhood Cancer Awareness Month (CCAM) continues to strengthen in message and resolve. Come October 1st, some wonder what can be done to sustain some of [...] Read more

CAC2 Member Blog–Better Together

December 1, 2020
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By CAC2 Member Carolyn Breinich In 2019, I attended my first CAC2 Summit in Columbus, Ohio.  It was there where Mariah, a 40-year survivor, and I, a 26-year survivor, met, connected, and formed a special friendship. We quickly realized that even though we did not have the same form of childhood cancer and even though we were diagnosed at two very different ages, we had so much in common and we understood how each other felt as long-term childhood cancer survivors. We both agreed that it was wonderful to have someone to talk to, since connections and resources had been limited or non-existent for [...] Read more

CAC2 Member Blog–An Estimate of the Long-Term Outcomes for Children with Cancer

September 18, 2020
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By CAC2 Member Bob Piniewski, People Against Childhood Cancer Childhood cancer statistics, like all statistics (1), can be confusing.   Any statistic can be used to hide or distort the truth, and even the statistics we trust may only tell part of the story. This essay analyzes some familiar childhood cancer statistics and attempts to draw them together in a holistic way to estimate the projected lifelong outcomes for a child diagnosed with childhood cancer in the United States today.  By lifelong outcomes, we mean what may happen over that child’s entire life--not just today or in five years, but 10, [...] Read more

CAC2 Member Blog–Lessons Learned from a Childhood Cancer Survivor

August 8, 2020
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By CAC2 Member Mariah Forster Olson, Neuroblastoma Children's Cancer Society As a long-term childhood cancer survivor with numerous late effects, I have had 39 years of experience in the medical field…as a patient.  As many of us know, life consists of doctor appointments, blood work, diagnostic tests, procedures, surgeries, and more.  All of this can be incredibly difficult, exhausting, and depressing, but I have learned some important and valuable life lessons as a childhood cancer survivor. On June 6, 1980 at the age of one, doctors found a large tumor that occupied the entire right side of my chest.  The tumor [...] Read more

Childhood Cancer and Prevention – The Time is Now

July 29, 2020
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Survivorship Matters Blog By CAC2 Member Mary Beth Collins My introduction to the idea of prevention and childhood cancer didn’t come from a yearning for advocacy and systems change. It also didn’t come years after my son was diagnosed, with a desire to help other parents learn how to nurture healthier environments for their children. It was thrust upon me during my son’s neuroblastoma treatment, by prospective buyers of our house. Somehow, they not only found out that my son was in cancer treatment, but they also found out the type of cancer he had. The couple had researched environmental toxins [...] Read more

Five Categories of Childhood and Adolescent Cancer Survivorship

July 1, 2020
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The CAC2 Survivorship Working Group assembled this document to help categorize survivorship issues for the community.  It is by no means an exhaustive list, but it gives examples of some of the challenges that survivors face in each of the categories that our group has identified.   EDUCATIONAL: Academic Success – how to achieve it, partner with the schools, how a family can encourage it from home Core Competencies – Prepare and Share with School Counselors, Educators, School Nurses, Doctors, Child and Adolescent Therapists, etc. Developing plans to help students Individualized Education Program (IEP) vs. 504 Plan Emphasize plans need to […]

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Survivorship Matters Blog–Gratitude and Challenge Co-Exist In Childhood Cancer Survivorship

June 28, 2019
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Survivorship Matters Blog By CAC2 Member Mary Beth Collins   The day that a child completes treatment brings a special kind of glory. Some hospitals even have huge bells to ring to signify the occasion. Regardless of the symbolic gesture, a parent’s spirit hears trumpets sound, now beaming where darkness and fear were ominous for months or sometimes years. One’s life immediately transitions at such times, divorcing from the days of treatment highs and lows, fears of pending death, and the mosaic of so many emotions when parents yearn for children to be healthy enough to complete treatment. It is winning [...] Read more

Survivorship Matters Blog–Childhood Cancer and Bullying – It’s More Common, and Has Greater Impact, Than You Think

June 3, 2019
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Survivorship Matters Blog By CAC2 Member Mary Beth Collins My introduction to childhood cancer and bullying was in 1999 on a neuroblastoma listserve with ACOR (American Cancer Online Resources), the way parents and specialists congregated together before the explosion of social media channels like Facebook, Twitter, or Instagram. My son had only been in treatment a few months, and a parent was sharing an incident that happened on the playground. Her son had been looking forward to getting well enough to return to school, and his fellow classmates decided at recess to taunt him by pretending to be afraid of [...] Read more

Survivorship Matters Blogg–The Academic Impact of Childhood Cancer Treatment Side Effects

April 2, 2019
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Survivorship Matters Blog By CAC2 Member Mary Beth Collins “Your child has to be alive to experience side effects.”  It’s a statement commonly heard by parents reviewing treatment protocol for a child newly diagnosed with a pediatric cancer.  At that moment, one is only focused on desperately keeping a child alive and achieving No Evidence of Disease, or ”NED” as is commonly referenced. At that time, it’s almost impossible to consider quality of life factors when parents are terrified that without treatment they will lose their child.  According to the Coalition Against Childhood Cancer (CAC2) Fact Library, more than 95% […]

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