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Joseph’s Legacy: A Personal Odyssey in the Fight Against Childhood Cancer

By CAC2 Student Member Joshua Omale   In the hushed corridors of my memories, Joseph's laughter remains a poignant melody, forever intertwined with the tale of his unwavering courage in the face of Hodgkin's Lymphoma. A journey that began with a misdiagnosis, the local hospital here initially labeled his symptoms as malaria, an oversight that cast a shadow over the critical early stages of his battle. It wasn't until we sought refuge in the halls of a larger hospital in another city that the cruel reality unveiled itself – Hodgkin's Lymphoma, a formidable adversary masked in the guise of a [...] Read more

Grief and the Holidays

By CAC2 Organizational Member Katie Holcomb (Ryan’s Case for Smiles) When you’re grieving the loss of your child, holidays are tough. Instead of bringing joy and good tidings, the holiday season can increase feelings of sadness and loss. Even if you don’t celebrate a winter holiday, watching others come together can make you miss your child and old life, even more. While this is expected, it does not mean it isn’t hard. Below are a few ideas to help you manage grief this holiday and future ones to come.     Am I Grieving? As the holidays draw near, you […]

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Fueling the Lifelong Fight Against Childhood Cancer: Nutrition for Patients and Survivors

By CAC2 Organizational Member David Achey (Wit You Against Childhood Cancer) Childhood cancer is a challenging experience that affects everyone: the child, their family and their loved ones. Both during and after treatment, nutrition plays a critical role in supporting the health and well-being of childhood cancer survivors and caregivers. Proper nutrition can help manage treatment-related side effects, support healing and recovery, and promote a long, healthy cancer-free life. Per the American Cancer Society[1], proper nutrition can help childhood cancer patients and survivors: Feel better and sleep better; Work better with their healthcare team; Reduce irritability and improve dealing with […]

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Remembering Donna “Nana” Marie Carmical: A Fierce Advocate for Childhood Cancer

By CAC2 Individual Member Joe Baber and Organizational Member Dena Sherwood (Arms Wide Open Childhood Cancer Foundation) On July 18, 2023, the childhood cancer community suffered a heartbreaking loss as they bid farewell to Donna "Nana" Marie Carmical. Known for her unwavering dedication and compassion, Donna was an advocate and a cherished friend to many. Her journey as a fighter began when her beloved grandson, Declan, lost his life to AT/RT brain cancer before his first birthday. In his memory, Donna co-founded the Journey 4 A Cure Foundation (J4AC) to spread awareness, increase funding, and promote more childhood cancer research. [...] Read more

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

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

Thankful and Fearful

By CAC2 Individual Member Joe Baber Because of my grandson, Conor, a neuroblastoma survivor, I have met so many people in our childhood cancer community who want to improve the outcomes of children fighting cancer. We either have children in treatment for cancer or have children who are survivors or have died because of it.  We’re all thankful when there are lifesaving therapies and at the very same time, we are fearful of relapse, side effects of the drugs, chemotherapy, radiation, surgery and even death.  These contrary and parallel emotions seem to be linked in partnership throughout the childhood cancer […]

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

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

Invited Blog–Delayed Diagnosis for Children with Cancer

By CAC2 Member Susan Guisto (Friends of Cathryn Foundation) and Guest Blogger Judith G. Villablance, MD, Children's Hospital Los Angeles Every year, approximately 1 in 10,500 children from birth to 15 years of age are diagnosed with cancer in the United States. Most pediatricians will likely encounter only one to three cases throughout their professional lifetime. Even though a pediatrician may never see a case of cancer in his or her practice, it is important to understand what to look for, how to evaluate patients and to ensure follow-up and timely referrals to specialists. As a result, pediatricians can play [...] Read more

CAC2 Member Blog–Joint-Funding Initiative for Ewing Sarcoma

By CAC2 Member Sarah Bartosz, Beat Childhood Cancer This collaborative research effort was due in part to childhood cancer groups coming together as part of CAC2. Nearly one year ago, Gold In September (G9) joined forces with Beat Nb to become Beat Childhood Cancer, a single organization building research infrastructure, funding precision medicine, and growing the conversation to champion gold awareness. With belief in parent impact as a driving force, the expanded Beat Childhood Cancer organization has forged a new collaboration with other CAC2 members. In an effort to find novel ways to support precision medicine efforts, The Spada Pediatric [...] Read more

CAC2 Member Blog–Surveying Parents to Inform Physicians

By CAC2 Member Patti Gustafson, Swifty Foundation For years we looked to medical professionals to tell us what we needed to know to treat our son’s medulloblastoma. We trusted them and we followed their advice. Since 2013, we have been working with families who have lost their child to cancer and we’ve focused our attention on post-mortem tissue donation. In 2017, we held an Investigator’s meeting in Chicago to discuss best practices for the collecting, storing, and sharing of tissue. In 2018, we hosted families from across the country for a Family Forum to discuss their experiences with post-mortem tissue [...] Read more

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