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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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Survivorship Matters Blog–What Is Survivorship?

February 14, 2019
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What is survivorship?  For anyone touched by childhood cancer, the word is intimate, emotional, and somewhat complicated. Whether you are a child in treatment or beyond, parent, friend, practitioner, or researcher, the word is familiar, personal, and identifying. For each person, the word represents something unique. Is it just a label? Is it elusive? Is it a dream never realized? Is it a charge? Is it determinant? A proclamation? A destination? A victory? A curse?  An honor? Survivorship in its entirety embodies all of this.   All versions are worth exploring, if we are going to really embrace what survivorship means […]

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Why Gene Therapy is No Longer a Pipe Dream

July 9, 2018
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CAC2 Research Explained CAC2 members and guests who are also professionals in the field of childhood cancer research find and curate important work and provide pointers and explanations for our general membership. CAC2 Member Laurie Orloski, PharmD, found and curated the article in the link below: https://psmag.com/social-justice/gene-therapy-no-longer-pipe-dream It is well appreciated that cancer is a disease of the human genome, arising from alterations in DNA. In 2017, the US FDA granted its very first regulatory approval of a gene therapy, specifically for the treatment of pediatric and young adult B-cell acute lymphoblastic leukemia: anti-CD19 chimeric antigen receptor (CAR) T-cell immunotherapy [...] Read more

Oncohistones

May 4, 2018
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CAC2 Research Explained CAC2 members who are also professionals in the field of cancer research find and curate important work and provide pointers and explanations for our general membership. Raquel Sitcheran, PhD found and curated the three articles cited below. One of the most remarkable findings in childhood cancer research in recent years has been the discovery that defects or mutations in genes that encode histones are directly linked to tumor growth. Histones are proteins that bind DNA and control how DNA wraps and coils itself to form more condensed chromosomes (see Figure). They not only provide structural support for [...] Read more

CAC2 Member Blog–An Individualized Approach Requires Collaborative Efforts

November 27, 2016
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By Vickie Buenger, President of Coalition Against Childhood Cancer The Coalition Against Childhood Cancer (CAC2) held its first pediatric cancer research conference entitled From Bench to Bedside and Beyond to connect childhood cancer advocates, research funders, clinicians, and scientists from academia and industry. A number of common themes emerged from the various investigators’ presentations. Clearly, most childhood cancers are different than adult cancers, and the relatively small numbers of patients present problems for researchers, sponsors, and others responsible for designing clinical trials. We must remember that these small clusters of patients represent our children. Presenters also agreed that despite progress [...] Read more

CAC2 Member Blog–Triage Cancer

November 17, 2016
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By CAC2 Member Angie Giallourakis, Steve G. Cancer Research Fund TRIAGE CANCER: verb. \trē-ˈäzh,ˈkansər\ the assigning of priority order to projects on the basis of where time, funds, and other resources can be best used, are most needed, or are most likely to achieve success in navigating cancer survivorship issues. I was first introduced to Triage Cancer a few years ago at a Critical Mass: YA (young adult) Cancer Alliance conference where a speaker addressed attendees about Obamacare. It didn’t surprise me that shortly after the conference I began receiving some of the most noteworthy information about programs on cancer survivorship. […]

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CAC2 Member Blog–Three Words I Heard from my Pediatric Oncologist that Still Haunt Me

September 28, 2016
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By CAC2 Member Kayla Funk, Open Hands, Overflowing Hearts   The world stopped spinning for a moment. Time beyond the oncology clinic stood still. Though I knew he was right, I refused to believe my doctor and the words coming out of his mouth. “When neuroblastoma progresses through therapy, we are unable to cure it.” I listened, but I ignored him. I was 19 years old and had spent the last 15 months of my life going through gruesome treatments. The cancer should not have grown. “We will try to suppress your disease for as long as possible, but I don’t […]

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CAC2 Member Blog–“Am I Going to Die?” Reflections of a Survivor

August 25, 2016
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By CAC2 Individual Member Angela Lee I remember ‘that day’ like it was yesterday. The sun was shining on a beautiful spring day in Virginia as my mom and I sat quietly in a hospital room waiting for an oncologist to pay us a visit. I was admitted just days before for a series of lab work and tests that reduced me to feeling like a science project. Although I remember that day very clearly, it was 32 years ago that I heard “It’s a form of cancer” followed by my response “Am I going to die?’. On a beautiful [...] Read more
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