For many youngsters in Kent, Earthworks Park Feb. 24 was the place to be.<\/p>\n<\/p>\n
It was the day of the big snow, and the park\u2019s hilly topography was perfect for high-speed runs, with a nice big pool of mud at the bottom.<\/p>\n<\/p>\n
Charlie Edgmon, 7, was one of those kids feeling the need for speed. The only difference being that he was maybe even more excited than the rest of them.<\/p>\n<\/p>\n
It was his first time ever riding a sled.<\/p>\n<\/p>\n
Bundled against the cold, the Scenic Hill first grader and twin siblings Izzaiah and Savannah, 4, spent the afternoon running and sliding at the park, along with mom Carmin Edgmon.<\/p>\n<\/p>\n
Charlie, ever exuberant, ran through the snow playing chase, and occasionally rolling off the sled. But if you were looking closely, you might start to notice a slight limp.<\/p>\n<\/p>\n
It\u2019s a sign of a bigger issue – and part of the reason why up until now, Charlie hasn\u2019t had the usual opportunities most 7-year-olds get with a sled.<\/p>\n<\/p>\n
Charlie is fighting brain cancer.<\/p>\n<\/p>\n
\u201cHe\u2019s had seven surgeries total,\u201d said Carmin, noting Charlie\u2019s cancer was diagnosed when he was just 2 months old.<\/p>\n<\/p>\n
Charlie has a cancer called Choroid Plexus Carcinoma. It\u2019s an aggressive, rare cancer that most often occurs in children. It\u2019s associated with many symptoms, among them seizures, severe headaches, nausea and excess fluid on the brain. It\u2019s also very hard to beat, meaning the prognosis is not good for those diagnosed with it.<\/p>\n<\/p>\n
Charlie\u2019s illness, which kept him hospitalized for much of his first year of life, also has another component. It\u2019s one that has implications for Carmin, outside of being Charlie\u2019s mom and main caregiver.<\/p>\n<\/p>\n
Charlie\u2019s cancer is frequently associated with another health condition called Li-Fraumeni Syndrome. It is a hereditary disorder that greatly increases the risk of developing cancer, thanks to a gene that doesn\u2019t work right, and can\u2019t turn off the growth of cells.<\/p>\n<\/p>\n
In the U.S. an estimated 400 people from 64 families have this disorder.<\/p>\n<\/p>\n
Carmin and Charlie are two of them.<\/p>\n<\/p>\n
\u201cMe and Charlie have the condition – only I don\u2019t have cancer yet,\u201d said Carmin, who learned she had the faulty gene for Li-Fraumeni after doctors tested Charlie for it.<\/p>\n<\/p>\n
For Carmin, the diagnosis explained a few things.<\/p>\n<\/p>\n
Her dad died from cancer when he was 39, and his mother – her grandmother – also died young from cancer.<\/p>\n<\/p>\n
Carmin is realistic about her life, given what she has been told and what she has seen.<\/p>\n<\/p>\n
\u201cI\u2019ve been told I won\u2019t see 50,\u201d she said, matter of factly, as Charlie and his siblings ran through the snow, laughing with delight.<\/p>\n<\/p>\n
Izzaiah and Savannah don\u2019t have the faulty version of the gene. Carmin calls them her miracle children.<\/p>\n<\/p>\n
In talking to Carmin, it\u2019s also possible to see another miracle – the gift of time.<\/p>\n<\/p>\n
Early into Charlie\u2019s illness, doctors measured his life expectancy a week at a time.<\/p>\n<\/p>\n
\u201cWe\u2019d live for that week,\u201d Carmin said, noting the first two years were awful because of the uncertainty.<\/p>\n<\/p>\n
\u201cWe didn\u2019t know how much time we had.\u201d<\/p>\n<\/p>\n
Today, Carmin is taking things one day at a time, with Charlie and with their lives as a family. She has a job and goes to Highline Community College, where she\u2019s working on an associate\u2019s degree to become a chemical-dependency counselor. On her own since 13, she\u2019s hoping the hard lessons she learned growing up will help her to connect with troubled teens as a counselor.<\/p>\n<\/p>\n
\u201cIf I can reach one kid, then maybe the chaos was worth it,\u201d she said.<\/p>\n<\/p>\n
And then there is the gift of the present.<\/p>\n<\/p>\n
She is the mother of a sweet, happy boy who frequently runs over to give her hugs – but like any kid, who\u2019ll get in a snit when his younger siblings don\u2019t do what he wants.<\/p>\n<\/p>\n
And after recovering from the suppressed immunities that chemotherapy used to give him, Charlie is starting to feel better.<\/p>\n<\/p>\n
Better enough, in fact, to grab a sled and hit the slopes.<\/p>\n<\/p>\n
So it\u2019s no surprise Carmin was laughing on Kent\u2019s big snow day.<\/p>\n<\/p>\n
It was a special day, indeed.<\/p><\/p>\n","protected":false},"excerpt":{"rendered":"
For many youngsters in Kent, Earthworks Park Feb. 24 was the place to be. It was the day of the big snow, and the park\u2019s hilly topography was perfect for high-speed runs, with a nice big pool of mud at the bottom.
\nCharlie Edgmon, 7, was one of those kids feeling the need for speed. The only difference being that he was maybe even more excited than the rest of them.
\nIt was his first time ever riding a sled.<\/p>\n","protected":false},"author":217,"featured_media":11597,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[4],"tags":[],"yst_prominent_words":[],"_links":{"self":[{"href":"https:\/\/www.kentreporter.com\/wp-json\/wp\/v2\/posts\/11596"}],"collection":[{"href":"https:\/\/www.kentreporter.com\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.kentreporter.com\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.kentreporter.com\/wp-json\/wp\/v2\/users\/217"}],"replies":[{"embeddable":true,"href":"https:\/\/www.kentreporter.com\/wp-json\/wp\/v2\/comments?post=11596"}],"version-history":[{"count":0,"href":"https:\/\/www.kentreporter.com\/wp-json\/wp\/v2\/posts\/11596\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.kentreporter.com\/wp-json\/wp\/v2\/media\/11597"}],"wp:attachment":[{"href":"https:\/\/www.kentreporter.com\/wp-json\/wp\/v2\/media?parent=11596"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.kentreporter.com\/wp-json\/wp\/v2\/categories?post=11596"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.kentreporter.com\/wp-json\/wp\/v2\/tags?post=11596"},{"taxonomy":"yst_prominent_words","embeddable":true,"href":"https:\/\/www.kentreporter.com\/wp-json\/wp\/v2\/yst_prominent_words?post=11596"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}