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National Childhood Cancer Awareness

Clare Desmelik | Brevard, NC | September 2018

September is National Childhood Cancer Awareness month…not a pretty topic what-so-ever. Yet it is one that is dear to my heart as a parent of a child who has been bravely fighting brain cancer for the past four years. My son Holmes was diagnosed right after he turned five years old, and ever since we were thrown onto this journey, we have been advocating for more awareness and more funds to help find better treatments and cures. Before he was diagnosed, my vision of childhood cancer awareness was primarily based on commercials for St. Jude, where beautiful, bald little girls in tutus were twirling through the hospital halls with their IV poles alongside some beautiful celebrity such as Jennifer Aniston. While we are so grateful for the hope and research St. Jude brings to thousands of families, and we are grateful to the celebrities who aim to draw attention to the need for funding, we also quickly learned that this is not the true face or reality of this disease. It isn’t pretty, it isn’t fun. It is dark, and it is scary. However, our community has lifted us up with love and has anchored us at the same time with hope.

Childhood cancer research is grossly underfunded. Only 4% of the National Institute of Health’s federal budget is allocated towards ALL types of childhood cancers. Childhood cancer is not just one disease. It is made up of a dozen types and countless sub-types. There are over 120 types of childhood brain tumors alone. Childhood cancer is considered “rare” although the incidence of childhood cancer has risen 25% over the past 20 years. 1 in 285 kids will be diagnosed with cancer by age 20. Childhood cancers are the #1 disease killer of kids in the US, taking more kids every year than every other childhood disease combined. Pharmaceutical companies fund 60% of adult cancer research, yet they do virtually no research for children because it is not profitable. Children are given drugs that were intended for adults: my son’s chemotherapy regimen was created for adult cancers decades ago. There has never been one single drug created and approved for malignant pediatric brain tumors. Every two minutes a child is diagnosed with cancer worldwide. One out of five of those children will not survive. The survivors will suffer from lifelong side effects from the treatments they endure. Unbelievable.

These numbers are enough to make any parent of a child with cancer pound their fists and cry out for help. We have been blessed that our community has rallied to help raise the awareness our children deserve in so many ways, on top of the overwhelmingly amazing personal emotional support and financial assistance. There have been lemonade and bake sales, coin drives walks and runs, powderpuff football games, concerts, and motorcycle rides all raising money to fund childhood cancer research. This month there was a “Shave-a-Thon” hosted by St. Baldrick’s Foundation, an organization dedicated to helping fund pediatric cancer research. Yes, communities rise up and step up to support the cause in honor of those whom they personally love and know. It’s not rare. Especially when it is one of your own.

Essential to every community are the schools educating and raising our children. When Michael Brown, director of Mountain Sun Community School, approached me and asked if he could shave his head in honor of my son Holmes, with the support of our Mountain Sun Community behind him…well…I was humbled beyond words. The MSCS board, families and staff members backed him and quickly became the top fundraising team!  He was joined by 16 other ‘shavees’ from our county, including a former colleague of mine from Transylvania County Schools. Brevard Elementary School, where Holmes is a 4th grader, also substantially contributed to the fundraising efforts with a coin drive. It was a stellar example of community support. The schools across our county were unified supporting and honoring children and families on this journey. It was a beautiful day full of laughter and hope. I cannot express how appreciative I was to see so many of my colleagues, students and their families there to support Michael as he “braved the shave.”  He indeed “Rocked the Bald.” He chose to go all the way, just like the children who lose their hair due to the toxicity of the treatments they receive. Michael and MSCS raised $2,095, contributing to the more than $17,000 raised.

I am grateful for the opportunity to teach these children Spanish and yoga here at this loving school. Our personal world revolves around caring for our son while he continues to fight this battle. We are in and out of clinics and hospitals monitoring cancer and the side effects that come along with it. His tumor is inoperable, however stable right now, and we are lucky to have the gift of this time. We are devoted to finding a cure and better treatments. We are lucky to have hope. We are lucky to have this village. We are lucky to belong to this COMMUNITY.

 

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