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Tag Archives: Childhood cancer

Welcome to My Reality: by Childhood Cancer Survivor Danielle

DanielleCloakeyby Danielle Cloakey, Childhood Cancer Survivor and Advocate

 

Imagine for a second that what tried to kill you as a child still runs rampant today, wreaking havoc and destroying lives. Can you see it? Welcome to my reality. I am not arguing that cancer is not a monster, because it is. It crept into my life a few months after my first birthday, and its greedy fingers have not yet let go even today, 34 years later.

 

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Navigating the road less travelled….by most

MarjorieMcGibbonby Marjorie McGibbon, RN BScN, Paediatric Oncology Patient Navigator

 

Seventeen years ago, I decided to make a career change and become a pediatric registered nurse. I invited my boyfriend (now husband) to my apartment and proclaimed that “I needed to talk.”  He looked at me skeptically, knowing that those words could potentially be ominous.  “Don’t look so serious,” I said. “I just want to change my career, not my love life!”   He chuckled out a sigh of relief.  But when I asked him seriously what he thought of my idea to switch from a long term goal of athletic therapy into pediatric nursing he simply looked at me and said, “Of course you should do it.  You’d be a natural!”

 

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The Valley of Echoes: Bridging the Communication Gap Between Patients, Patient Advocates, Researchers and Clinicians

jonathanaginSMALLby Jonathan Agin, CKN Section Editor

 

Recently I had the honor of speaking at the FACTOR Osteosarcoma Conference in Miami, FL, put on by the nonprofit MIB Agents.  This was the first osteosarcoma conference of its type.  For two days, sitting in an ornate and impressively handcrafted room at the Biltmore Hotel in Coral Gables, FL, 150+ researchers, clinicians, parents, patients and advocates breathed in the same air.  Throughout the conference, there were medical presentations involving surgical intervention, limb salvage, drug discovery, drug development, trial design, genetics, patient advocacy and much more.  The agenda was amazingly and stressfully jam-packed.  The purpose of the two day meeting was to bring stakeholders together in one room and discuss priorities for the osteosarcoma community.  The talk I gave was affectionately titled, “Guilty as Charged: Opportunities from Miami and Beyond.”  I was guilty of providing Ann Graham, from MIB Agents, and Theresa Beech, an osteosarcoma parent herself and a childhood cancer community outlier (think Malcolm Gladwell’s book Outliers), with the thought that if they wanted to see change for the osteosarcoma community, then they should think about having a conference.  And thus, welcome to Miami circa February 2017.

 

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World Cancer Day 2017: A few words from Jonathan Agin

jonathanaginSMALLby Jonathan Agin, Childhood Cancer Advocate

 

Someone once said that hope springs eternal.  In the context of cancer around the world, as 2016 came to a close and 2017 dawned, a palpable sense of hope continued to take root despite the backdrop of a cautious and uncertain landscape.  Peeling back the layers of hope, there are a number of dynamic factors that have fueled this optimism.  A greater understanding of the underlying genetic and molecular targets and drivers of cancer continues to expand almost daily.  Global efforts to unlock new targets and treatments, precision guided therapies, precision medicine, investigation into the use of drugs widely proliferated in other diseases, cheaper access to genetic testing, and on and on, all form the foundation of hope.  Hope is not created through alternative facts; rather it is nourished by steadfast effort.  For those of us in the cancer advocacy community, effort is never lacking.

 

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World Cancer Day 2017: A few words from Karen Ladner Haas

KarenHaasby Karen Ladner Haas, Childhood Cancer Advocate

 

Going into 2017, I have mixed emotions about cancer. I feel optimistic about my son’s battle with the disease itself, but I am frustrated about the long term side effects of the treatment he endured. It seems that with each passing year, we find out about more long term effects. I know from discussions with other parents, and from our personal experience, that survivors face numerous issues. Long term effects of cancer treatment are a complex problem that can involve or lead to physical, cognitive, and mental health issues. Regular follow-up is necessary, and for many of the issues this means trips to the hospital. These trips can be physically, financially, and emotionally draining.

 

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World Cancer Day 2017: A few words from Trisha Paul

TrishaPaulby Trisha Paul, CKN Advisory Board Member

 

I could never have anticipated how much the field of oncology would excite me. As a teenager, I chose to volunteer with pediatric oncology patients on a whim. I found myself fascinated, and deeply humbled by the psycho-social challenges that these young patients and their families face. I found my way to medicine, and I wondered whether the medical field of oncology would be similarly intriguing to me.

 

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